Hold on

Surgery sucks

2011-07-07T16:38:00.001-07:00

"Maybe there are just alien babies in my belly????" -a text I sent to my twin last week.
I'm guessing most everyone who reads that wont get my humor. The ultrasound tech looked at me with worried eyes when I said it to her. I'm assuming the surgeon isnt much into sci-fi because he didnt even crack a smile when I said it to him. Whatever, humor is how I deal with the messiness of life. And finding three abdominal masses on my catscan, a little messy if you ask me.

It seems my saga continues. I need abdominal surgery, once again. This is my third surgery in less than three years. The first,my c-section that gave me my beautiful miracle boy. The second, a hysterectomy, should have been enough, if you ask me. But, no one is asking me. I dont have all the answers, will only have all those after the surgery and biopsy. I'm not really sure how I feel about all of it. Well, ok, in true Christina fashion, let's be honest, I'm pretty pissed off about it. I'm sick of surgery and recovery. I'm sick of scars on my belly and internal scar tissue. I'm sick of being humbled and in need of help from others. If I could drive myself home from the hospital after surgery, I would. I have been in a place of need several times in the last three years and I am over it.

I would happily take some alien babies over a malignancy. Three in fact, since there are three masses. But we seem to be leaning more toward more c-section complications than malignancy and the surgeon pretty much ruled out aliens. C-section complications. Pretty frustrating. Was the loss of my womb and fertility not enough? I'm not making light of the chance of malignancies. I've just never imagined my body would struggle with so much after my c-section.

I am fully aware that the c-section saved my son's life and mine as well. It was a life-saving, necessary, emergent surgery. So, if you feel the need to tell me to look on the bright side, save your sunshine for another day. I can be fully aware and grateful of that aspect of the surgery and still have to walk out the rest of it. Ok, I am not walking it out, pretty much stomping my feet in a tantrum.

I just spent the last year regaining and redefining myself after a life-and-body altering hysterectomy. I was finally back on the normal side of Christina. (and yes, referring to myself by name is normal for me) I'm grouchy and disheartened and feeling the most stubborn I have felt in a long time. I've yielded much in the last several years. I've bent til I was broken. I'm definetly in need of peace before my surgery.

No alien babies. No babies,nope, not anymore. I said goodbye to my fertility last winter. Sigh, surgery sucks.

My Survival Guide for Menopause

2011-01-28T14:26:00.000-08:00

Surviving Early Onset Surgical Menopause
Menopause is a part of every woman’s life as she matures into the later years. Menopause is usually a natural process occurring over a period of time with the symptoms worsening as time goes on. This gradual progression gives a woman adequate time physically, mentally and emotionally to prepare for the finality of her fertility. However, if menopause occurs suddenly after a surgery, the results can be devastating in their intensity of symptoms. You can adjust to the effects of surgical menopause if you become informed about the symptoms, are proactive in your health, and take time to nurture your spirit. A survival guide of basic information needed to ready oneself for the onset of surgical menopause can be a vital tool in helping you adjust to the new stage of your life. I, being in the throes of early onset surgical menopause myself, have prepared for you a handy little survival guide to get you through the basic issues.
Recovering from your surgical procedure will take time; use this time to prepare your mind and spirit for what the body is about to bring upon it. My first piece of advice is to make friends with old ladies, or make peace with your mamma; older women can provide a wealth of information on symptoms and coping mechanisms. Also, when you go to your post surgical gynecological visits sit with the late in life ladies and avoid the lush, pregnant women if you can. Their huge baby bumps and their glowing skin are a reminder of what your body can no longer do, reproduce, and this reminder can be painfully sad at first. The old saying, “Misery loves company,” is applicable in this situation. Talk with the older ladies, gain valuable advice and commiserate on hot flashes and mood swings. You might gain some valuable advice on the best skin cream for your soon- to -be losing-elasticity skin or a tip on the best tasting calcium chew; you’re going to need those, soon by the way, to avoid the bone loss that comes along with menopause.
When going through ‘the change’ known as menopause, it is important to remember to take care of yourself. Fatigue and insomnia and a drop in metabolism are all common to woman experiencing menopause. Combat these issues by exercising regularly, staying hydrated with water, eating healthy, and taking vitamins necessary for your body’s changing needs. You will probably experience the punishing experience known as hot flashes and also night sweats. Dressing in layers and sleeping with a fan will help you cop, but be prepared; these symptoms are especially severe in surgical menopause. Hormonal and herbal supplements have been known to help, so ask your doctor what she would recommend for you. Being aware of what you can experience helps take away some of the unknown of your situation and can help you feel more in control of this life-altering condition known as surgical menopause.
Women who experience menopause at a much younger age than expected often face other daunting side effects of menopause. Many times they lose self confidence and face depression as they say goodbye to their childbearing fertile years early. My advice is practical and fun. First, form a support network of friends, or even medical professionals who you can talk with about your feelings of loss or sadness. Purchasing a pretty journal to write all of your thoughts and frustrations as you deal with the blow of early menopause can also be helpful. Also, I say, embrace the sexy and the beautiful in you. Pamper yourself with manicures, pedicures, or even new underwear or lingerie; anything to remind you of your womanly self is great. I chose a theme song for myself that I played in the lowest points of recovery after my surgery, usually playing full blast after I left the gynecologist’s office, or attended one of the many baby showers of my young, beautiful, fertile friends. It is important in this shifting time that you not lose sight of the inner beauty of you, the part of you that nothing can rob or change, not even a scalpel or the absence of hormones.
My last piece of advice centers on the idea of mothering. I experienced my surgical menopause at a time in my life when I wasn’t quite ready to say goodbye to the idea of motherhood or fertility. My reproductive organs were surgically and necessarily removed from my body, and I felt the loss most significantly in my heart. I found it helpful to find something else to focus my attention upon; I needed something else to nurture and labor. If you also struggle with the loss of fertility in a personal, longing sort of way, I encourage you to find something else to baby. A pet, a project, a charity, a hobby- any of these can help you move on to a place of acceptance.
Surgical menopause is life changing. The symptoms of raging hormones, crashing moods, and memory loss can be difficult to deal with if you are not prepared. The loss of your fertility before you would naturally lose it can be daunting; however, avoiding the reality of it is not helpful. Embracing this extreme change is not expected, but preparing for it can help immensely. Arm yourself with tips and tools, equip yourself with proper nutrition and fitness, pamper yourself with fun and friendship, and you just might make it through surgical menopause with grace, dignity, and laughter.

In an attempt to avoid fluff, more menopause talk...

2011-01-27T21:06:00.000-08:00

...Thinking tonight-of writing.
of writing about my hysterectomy
of the state of my body almost a year after the surgery,
of menopause.

I did write about it, an assignment for class, a rushed, last minute, just get it done paper. I will probably post on here soon. I got an A on the paper, was proud of it for a minute. But then I reread it and it just felt like fluff. Because I cant wrap up the last year in five paragraphs. I cant wrap up in a neat, little bow the heartache and loss I felt after losing my fertility from a scalpel. I cant explain away the year of wondering in the darkness, of trying to find my way back to the woman I once was with a few quick words of advice. I haven't recaptured the self confidence I lost. Sometimes I cant identify my new self- more quiet, more uncertain,withdrawn shifting, shuffling my feet almost in this life, not wanting to be recognized or noticed yet.

"Don't look at me, I don't feel youthful anymore. Don't notice me, I don't feel sexy anymore. I lost that. Don't look at me, you might see envy in my eyes or recognize the weariness of my soul."

I miss my period. It's been over a year. I have a hard time realizing that I will never have one again. I know, how ridiculous, how often it was an inconvenience or an interruption into my life but the absence of one makes me cry.

My body has changed in crazy ways I wont share on here. I find myself looking for age spots or wrinkles, as if I am really aging that fast. I'm not. I'm just in premature menopause.

More this year than ever before. I have played with makeup, I have invested in beauty supplies. I've curled my hair, I've painted my nails. I've worn more dresses and high heels. I have played in boots, black stripper boots, brown cowboy boots; anything that goes "clickety clack" in the hopes that the echo will make me feel sexy. I've bought more lingerie this year than I brought on my honeymoon. All of it is a fake out.

A surgery cannot rob me of my inner beauty. The scalpel cant cut that away. My hormones may fluctuate and wreak havoc on my body and my mind, but they are just a part of me, not the full picture. Some days I do have this self awareness, this logic pulls me out of my sadness. Most days I still sense a challenge and embrace it, bring it world, that girl is still inside me. But there are days when I am flat, when my emotions are flat, my hormones fluctuate, my body responds, but my spirit is flat. I am not sure I can describe or explain it to a woman who hasn't been there. And maybe others are different than I.

I feel like I had to redefine myself in some ways after my surgery. I identified so much with being a mother, with being a nurturer, with being a lush and fertile woman in the prime of her life. Suddenly, all I knew changed. I feel like I have had to fight my way back and at times find other things to embrace about myself.

My article wasn't fluff. The advice is helpful, but I know my tone was light. Perhaps it shouldn't be. I wasn't prepared. I didn't know how heartbreaking this last year would be for me as I said goodbye to what I defined as feminine and beautiful. I didn't know how disconcerting it could be to age prematurely, suddenly. I found I wasn't quite ready to grow up so soon.

I remember in the span of one day having a conversation with my twin about her period and my mother about our menopausal symptoms. That night I sobbed because what was happening to me wasn't normal and wasn't natural. How do you come to terms with that? It doesn't happen over night. I still have days when I struggle to deal with the physical symptoms of menopause and more so struggle with the acceptance that this is my life now. But I think each day that goes by, I feel stronger, more confident.

The days and weeks right after my surgery were very dark, bleak days. I don't ever want to go back there. I felt adrift, in a sea of pain and then oblivion as my pain medicines kicked in. I felt alone, lost, forgotten, and unrelatable. My friends could not understand; they were still having periods, making babies, having babies,or trying to avoid making a baby. I was realizing that babies were no longer in my future.

Last spring was not about rebirth and newness to me; it felt more like a long, dark winter. Then came all the other issues that led to the realization that my body wasn't going to recover like expected and that I was experiencing surgical menopause. A final blow for me; it sent me lower than I have ever been. There were days I didn't want to get out of bed. Days I didn't want to talk to anyone. Days I cried, nights I did as well. I pulled the covers up over my head on life for a while.

When that did not work, I tried diversionary tactics; busyness, road trips, shenanigans. Along the way, I found parts of myself. It's still a journey for me. There is no magic pill, no fast and sure way out of the flatness, out of the sadness. There is more than fluff though to my story, to the last year of my life. It has been hard, so very hard, but it has also had it's moments of beauty and of rediscovery...

I found peace in the mountains. I've been several times this year to WV. It always calls me home. My home among the hills, how very true.

I found joy again. On the fourth of July, my daughters chasing fireflies as I sat and talked with my best friend on the back patio. All was not lost because of my surgery, things were shifted and change happened, but the beauty of my life still remains. My children. My family, My friends. I felt blessed beyond measure that night, I felt ready to embrace life and laughter and simplicity again.

I found solace in my writing and in my openness with friends who read my words, my emotions poured out in emails; beautiful, loving friends who allowed me to just be me.

I found passion for old dreams I had set aside. I found parts of myself I had shelved and denied.

There is more, I am sure. But I don't want to do a disservice to my struggle. Not many people talk about this subject, hysterectomies, surgical menopause, early onset menopause. How about periods, most people don't even talk about them and I will never take them for granted again. And so I am beginning to open up, to examine this past year and find out what I can take from it, what I can gain from it, instead of just focusing on what I have lost.

The Passing of A Decade

2011-01-10T15:17:00.000-08:00

I didn't think I was old enough to give a "back in my day" speech. You know one of those talks that your parents and the older generations give on how things were SO different in their day and usually much harder. After all, I'm 33, my experiences cant be much different than most of those in my speech class, right?

This return to college after at least a decade of being out of formal education has surprised me in some ways. I've been reminiscing, comparing and contrasting.

Just eleven days ago, we started a new decade and this event, this turning of time has sparked some thought in me.

I sat in class last week feeling as though things were surreal and a little like the technological and electronic age has come at me and society at warp speed. Our professor spoke of the rules and how we should keep texting to a minimum. We spoke of not having Internet in the classroom.
"No Wifii, that's unheard of," one of my younger classmates remarked. I pretended like I could relate but really I couldnt. I can't remember a time I was in a classroom that had internet available to me.

I was completely ok with the thought of keeping texting to a minimum because well back in my day, there was no texting in class, we either passed notes in class or waited until after class to talk. I'm not sure any of us even had cell phones.

I feel like we are often bombarded with information and have become an instant gratification society nowadays. I am sure there is nothing so important that I need to hear it right away, it can all wait until after my class, this was my baseline thought as our professor went over the rules. Then my phone started buzzing, my friends were texting me in class, one after the other. It seems that while I was in class my favorite performer (yes Darius Rucker)was singing the National Anthem at the Sugar Bowl. Friends didn't want me to miss out on the performance. I texted back and forth, during breaks of course, about my triumphant return to school, my fears and insecurities, and what was going on outside the classroom.

After class I came home and within the hour was on Facebook, checking and returning emails, instant messaging with friends, commenting in real time with others. And it made me think of how different things are this time around as opposed to last time I was in college,a little over a decade ago.

As I was thinking about this, reminiscing,I began to Google things, wanting to compare my thoughts to the experts thoughts on how much technology has advanced in the last decade. My googling led me to an article by the Huffington Post entitled "You're out, 20 things that became obsolete this decade" I thought I would mention a few to you:

Video tapes have been replaced by DVDs and movies streaming through your computer or electronic device. We even watch Netflix through our Wii. How cool!

Encyclopedias and time researching in a library have been replaced by sites such as Google,and Wikipedia. Most anything can be researched online nowadays.

Cassette tapes and CD's are being replaced by MP3's, instant downloadable songs.

Handwritten love letters are quickly becoming a novelty or rare treat, as more and more people express themselves electronically through email and instant messaging.

A single friend of mine recently sent me a forwarded email from a man she was dating, wanting to brag a little on his romanticm. In the email he wrote a quick poem and then sent her a link to a youtube video of a love song. It made me smile and made me think of how far the love letter has evolved in the electronic age and what is yet to come. No more midnight serenades with the boom box outside your window, Say Anything style or long conversations late into the night on your landline phone, it's more like a 100 short quick texts in one night or possibly hours instantly chatting on IM. Quick, short bursts of conversation, with abbreviations like LOL and BRB and emoticons, the new way to express your feelings, who knew a smiley face could say so much.

Paper Maps and people stopping for directions are also becoming a thing of the past as more and more people turn to GPS units (global positioning systems) and Mapquest or Google Maps to get their directions from point a to point b.

During my sophomore year at college in 1996, a friend and I went on a road trip one winter weekend and became quite lost in nowhere WV. The snow was coming down, it was late at night and we were two young college girls afraid to stop for directions but we did stop, at a creepy gas station and ask. The men were very nice and gave us landmark directions, turn at the little church up ahead, go five miles and then turn by the old railroad bridge or something like that. We got turned around a few more times but eventually made it home. I imagine our trip would have been a lot easier had we smart phones equipped with MapQuest or a GPS. But the trip was comical and adventurous.

Speaking of traveling, travel agents are also quickly diminishing as more people use sights like Orbitz, or Priceline or Travelocity to plan and book their trips.

Information is available instantly and in many forms.

Social medias sites allow us to be involved in each others lives 24/7.

Texting is replacing most other forms of communication. According to a study by The University of Michigan the frequency with which teens text has overtaken every other form of interaction, including instant messaging and talking face-to-face. Teens would rather text than talk face to face, amazing.

I have no formal opinion about all of these advancements. My life is enhanced by technology. 2011 marks the start of a new decade. I'm excited to see how we grow and advance this decade and a little nervous about what we may lose out on. But only time will tell.

(This was an assignment for my speech class but several of my friends are mentioned in it, I had to blog it.)

Like a Snow Globe Turned Upside Down

2010-11-04T10:31:00.000-07:00

I write for Caleb...
Today, I am chasing a busy two year old with a bag of Halloween candy in each arm around the house. He is a bundle of energy, feisty, all smiles and giggles and sweet, sticky kisses. He is my delight, my precious baby boy who changed my life two years ago in ways I am still seeing unfold.

Today I sit for a minute and I remember how far we have come in two years; he as a determined, tenacious fighter, and us as his family, his support system, his prayer warriors and his cheerleaders.

Today I write for him, my baby boy, my fourth child, my only son, who came so early into this world; born at 28 weeks weighing 1lb and 11 oz and less than 13 inches long. My baby boy is now a toddler, and we are out of the life-and-death mode of his early months. He no longer struggles just to breathe or hold his temperature. He is no longer fed through a tube, or given platelets and blood transfusions. We haven't seen an operating room in quite a few months. We attend more well-child visits than sick. He is finally on a growth chart for both height and weight. I celebrate all of these accomplishments.

As he continues to grow and develop, I feel myself exhaling, letting out a collected breath held for so long. He took us on quite a journey, this little miracle child; ups and downs and an endless cycle of good days and then bad days, and then very scary, we might lose him days.

Those first few months in the hospital were the worst days of my life and also the most precious days of my life.

My mother's heart was torn between wanting to spend every minute with my new son, and also wanting to be present for my three beautiful daughters.

It was hard to adjust from my anticipated, expected birth to a rushed delivery and a baby hooked to tubes and monitors that kept him alive. I didn't meet my son for 18 hours after his birth. I didn't hold him until he was five weeks old. I was never able to nurse him but did spend hours upon hours pumping breast milk for him.

I wanted a healthy happy baby, a calm birth, a joyful welcome into our family. Instead, we had a very sickly baby, a scary, troubling,emergency birth, and a chaotic introduction of siblings.

My girls spent months shuffled between family members and only infrequent visits with their much anticipated baby brother. I missed the first day of first grade and fourth grade, actually the first nine weeks of school for them. I missed evening dinner conversations, talks about teachers and friends and school events; so much of everyday life was tabled, put on hold as we spent time, energy, and money to will our son to fight and live.

We brought our son home from the NICU three months after his birth on Halloween weekend. My husband and I once again adjusted to having a newborn in the house, the lack of sleep, the endless laundry, the dirty diapers, lullabies, tiny, infant sleepers, and nights spent in a rocking chair.

Just days after he was home we headed back to the hospital for an emergency surgery and spent two more long weeks in the hospital.

Our daughters struggled with separation anxiety and some anger and jealousy issues. But I also saw how much this family crisis shaped each of them in remarkable new ways.

Our family is more understanding and encouraging, more patient and also more in the moments of life now. My daughters are their brother's biggest cheerleaders. Each milestone Caleb has reached has required much work and determination and each one is not just noticed but celebrated. My girls spent months on the floor with him for tummy time, months learning physical therapy assignments to enjoy with him. They have endured countless schedule adjustments as Caleb's needs for therapies have grown (speech, occupational, and physical therapy.)

Our family life has changed. We have grieved for time and dreams lost. We have adjusted to meet Caleb's needs. We have had to provide grace to each other as we each face the way prematurity has affected us. It isn't always easy to provide grace when you are hurting or confused or angry.

None of us are happy about how our life was changed by prematurity. We wish Caleb had not been born early, but healthy and full term. It saddens me to see him still struggle years after his birth. He still faces unknowns in his development.

I've adjusted to a new role, that of a special needs mother. I haven't always been accepting of this title, I haven't always worn it well. I didn't want to be a preemie mom. I didn't want to be a special needs mom. I just wanted to be a mom; a mom to three amazing daughters and one prayed for, much anticipated son. I think in the last two years as I watch my hopes and my dreams get shuffled, displaced, changed, rearranged, that I have realized it is enough for me to be a mom, the rest of the label doesn't matter as much.
My heart is full of love and pride for my sweet children, for how far we have come in spite of the obstacles we have faced.

One in 8 babies in the US are born prematurely. This statistic is heart-rending to me. One in 8 families will go on a heartbreaking, life-changing, breath-stealing roller coaster ride of prematurity. A ride that often times has lingering and long term affects. Families are forever altered by prematurity. The strain is felt physically, emotionally, spiritually, and financially.

Before Caleb I was unaware of how troubling having a preemie could be. Two years after his birth, I feel as though our family was in a snow globe turned upside down and we are still waiting for everything to settle. The acceptance, the moving forward, the hope it all comes in stages.

Christina Craven

1 in 8

2010-11-01T14:37:00.001-07:00

It's Prematurity Awareness month and I hope to be blogging more this month to do just that: raise awareness for prematurity. It's a cause that has forever impacted my heart, my family, my life. I sometimes feel like I have written the last two years to death, whined my way through them if you will. I write to share updates, to process, to vent, and to celebrate. Even though I dont write anonymously, and sometimes wish I did, I often feel as I write that I'm more open than I would be in an actual "how are you doing" conversation.
As I write this I can barely think. Caleb is pushing every loud button on his toy firetruck, the girls are vocal about the delay of dinner, and I am just anxious to make a difference, to make a statement, to grow and to share. Two years seems like such a long time in some ways but in other ways I still feel in the thick of things. I've become busy in the day to day of life and I have craftily avoided major issues that linger and/or have developed. I've decided to quit being so crafty. and so my heart will be more open and vulnerable this month.
Most of you reading this were personally impacted by the premature birth of my son. You prayed for him, you cheered for him, you watched our girls, you provided financially for us, you eagerly looked for updates and celebrated every milestone along the way with us. Others of you have had your own stories of prematurity. I encourage you to take time this month, share your stories. Become educated about prematurity, educate others. Give to the March of Dimes, pray for a preemie family, donate your energy and money to The Ronald Mcdonald House. Read other blogs on the March of Dime website from other preemie parents.
1 in 8 babies will be born premature. This shocks and saddens me. Sit with it and see if it shocks you as well. In America. 1 in 8.

Summer of Fun Tour

2010-10-20T07:53:00.000-07:00

I am so excited. Cowboy Jason (aka my little brother) is flying in from Kansas tomorrow. I am spending the weekend with 3 of my best friends, my siblings. The chatter this morning at the Craven house was so fun, full of excitement for tomorrow. The girls have not seen their uncle since January and tomorrow starts the kickoff of a weekend with cousins as well. Savannah calls Jason her favorite buddy, it's the cutest thing. I love the bond they have formed and we miss having him close by although we fully support his eventual move to Florida. If not close to home, why not somewhere warm and beautiful, and not flat, cold, far away Kansas.

We are having a big family party tomorrow. My mom, filled with- my baby boy is coming home excitement, has cooked all of his favorites, probably in overabundance. My father is already planning the drive to Columbus in his own way, which back road are we taking this time Dad? My dad loves his scenic routes. After a big family party tomorrow, my two brothers, my sister and I will be heading to Wild and Wonderful West Virginia. I feel like I should be playing Country Roads already. We have tickets to the Wvu-Syracuse game Saturday and plans to just enjoy the weekend. Mountains, fall trees in all of their beauty, crisp air and sunshine, blue and gold Mountaineers everywhere, I can hardly wait.
I'm so charged to go I think because I have needed this. I've been fortunate to have traveled much this past year. I have labeled it "Christina's Summer of Fun Tour" and extended it into fall. It all started a month or two after my surgery with a promise or a pact with one of my closest friends. Both of us realizing we needed change in our lives, she needing more of a work/family balance and me needing more time investing in myself again. And so a pact was formed to check in, to hold each other accountable and to encourage one another to be the change we need in our own life. I think I stole that quote from somebody but it sounds good. And so in small and large ways I have set out to nurture Christina again. I've been running, writing, traveling, making more time for friends,incorporating my kids in my passions and activities,saying yes to things that excite me and no to things that bog me down. And this weekend will probably be one of the highlights of my year, a year of struggle and loss but punctuated with happy exclamation point moments. And so the Summer of Fun tour continues with much giggling and shenanigans anticipated for this weekend.

My Nike statement

2010-10-19T05:13:00.000-07:00

The motto for my life, JUST LET ME BE.

If I were to design a t shirt that accurately represents me, my heart, my sentiment, my "Nike" statement if you will, it would say this, "Just Let Me Be."

Not as in leave me alone or do not even think about bothering me; no, that isn't what I mean. I love people, enjoy being involved and invested in people. How can I help, what do you need, two of my favorite statements said genuinely. I've been blessed many times over by friends and strangers who have offered assistance and care and I like to pass it on.
But here I am at 33, wife, mother, daughter,sister,friend, some days wishing I could scream, just let me be. Or even say it in my, calm, mild-mannered, gently spoken voice, almost above a whisper: Let me Be! Let me be.

Let me be the girl I was. Let me be the woman I want. Let me be who I am right now. There are still remnants of the girl I was. Was as in when? Before I became a responsible adult? Before I became a mother? Before I became a mom of a special needs boy? Before I became a woman who lost her reproductive organs and skyrocketed into menopause? The girl who would try anything once, the girl who didn't look for assurances in life but embraced challenges. That girl's motto was "Bring it, I'll be ready." I'm no longer that girl although I try to embrace and incorporate her spirit in simple ways. Life taught me some hard lessons and they changed who I was.

The woman I want to be she seems almost as unattainable as the girl I was who so easily retreated, disappeared. I want to be strong and capable and giving and selfless. I want to be more, so simple in a statement, More. I want to be more than I am now. More than a wife, mother, daughter, sister, those are all roles I play, central to who I am, absolutely, yet dependent on others, on relationship dynamics.I want to be a writer, an advocate, and a capable, confident woman again. My surgery, this change in my life, robbed me of confidence and I stand on shaky ground. I want to be a woman who rises above that.

But right now I'm coping, looking in a mirror trying to find the best reflection of myself. The reality is that I am just staring back at myself and I need to accept who I see, not look for better lighting, or a different angle. I am a woman in the midst of a change I did not want, did not expect but cannot alter. Many days I do my best to just manage all the roles in my life. I don't take time for me and I think it is part of why I don't recognize myself now. Also part of why I feel the need to scream my new motto. For me in some ways change came over night, the birth of a son with health issues, the almost instant onset of menopause after a surgery, instantaneous and shocking alterations in my life. But in other ways, change is gradual, almost sneaking up on you. I became busy with life, with fulfilling the responsibilities of my life, and now my life is full of pressure, expectation and busyness.

I am attempting to come out of the retreat mode I entered into months ago. It seems riddled with setbacks and traps of my own making. I no longer offer the challenge of "Bring it" to the universe. Right now more than anything I just want to be. Be what? Just let me be who I am and not who you need or want me to be. Be whatever I need to be and I can tell you it probably isn't strong or capable.

I didnt bend

2010-09-05T11:29:00.001-07:00

I sat in church this morning with the realization that my heart is broken. I willed myself to face it, to even begin to approach it. I waited for the wall to come down. But it hasn't yet and so I venture further into facing it.

Lately, I have been sharing more with friends, close, dear friends, about the state of my life, of the different things going on, of where I am in the middle of my circumstances. Several friends, sweet Christian friends have gathered around me, offered prayer, a listening ear, and encouragement. Several in offering up prayers to God on my behalf, have broken down, have shed tears, have even openly wept. I have stood almost stoically, touched by their love, grateful for a loving God, but distant. I feel broken in a way I cant describe. Distant, unwilling to yield more of myself.
I sat at the middle school on Friday in the car pool line, the new bane of my existence, the waiting in traffic for my child. But I sat there staring out the window as Caleb fussed in his car seat and the traffic never seemed to move forward; we were stuck in time, stuck in traffic. I watched the pine tree branches, full and lush blow in the strong wind. They were able to bend, to go with the flow, never breaking, just going up and down and all around. And then the rain started, softly at first but then pounding. Others closed their windows, I opened mine fully and let the smell of the rain and the approaching storm into my senses. I watched those branches and I thought, I didn't bend, I broke.
I didn't bend. I broke. I broke all around, fully, completely. I couldnt keep my self together, my life together, it fell apart, all around me, piece by piece. At first I tried to actively hold my life together, tightly I clung to faith, to hope, to people. But over time as more and more became damaged or changed I gave up fighting and looked for shelter. Finding none within easy reach, I built my own, but not on steady ground. My dreams, my relationships, my faith, my body, my hope; I know longer clung tightly, I willingly ungrasped my fingers and let them fly away in the storm.
I never felt the full force of the storm on Friday, just a refreshing rain and strong wind. But it helped me focus in on the landscape of my life and I cant seem to catch my breath now. I feel broken. I see dreams I thought would see me through life fall apart before my eyes. I see realtionships I thought would carry me and shelter me revealed in new, stark, honest light. I am wary. I am surprised at how far I allowed the world, my self, despair and anger to carry me.
I believe in a Loving God, a forgiving God, A saviour full of Grace. and I wait for my walls to break.

A walk in the woods

2010-08-06T08:21:00.000-07:00

Today, I am cleaning madly, scrubbing floors and bathrooms, attempting to focus my mind on mundane but attainable tasks. Cleaning is not my favorite distraction, in fact it is a last resort for me. The cleaning part of being a stay at home mom, I suck at it. My heart is heavy today, my mood fowl, my faith changing, challenging me. Cleaning has helped me through the morning but I realize I need to process not avoid and so I write.
My girls are at summer church camp, they will be home late tomorrow. Caleb is still sleeping, rather exhausted from his long day yesterday. I'm feeling pressure today, pressure to hold my own, to not fall apart, to not struggle, to remain on top of things, hopeful, present, faithfilled and nonquestioning. But I have decided to let myself be, to let myself feel, to not deny or try to hide. I'm angry, frustrated, tired, melancholy, feeling the loss of so many things.
Caleb saw new doctors yesterday and also had some testing. He will be 2 in just a few weeks. In preemieland, this is advertised as the magic number. Most preemies are able to catch up developmentally by age 2. At two, you either graduate out of the program of NICU or transfer to a developmental peditatrician if you are not developmentally age appropriate. Apparantly for us, 2 is not the magic number. Age is relative, I'm in my thirties I know this. Development and personality are relative. Apparantly there is concern when a child significantly lags in several areas of development. We had lovely doctors yesterday even though we were in a tiny exam room for over 3 hours, Caleb and I. He, clothed only in a diaper, because any minute the doctor would be in to examine him. My sweet little boy, in just a diaper, toddling all over a tiny room with tile floors and metal cabinents and no toys,continually unfastening and refastening his diaper. I kept him entertained looking out the window at the parking garage searching for trucks like Pap's. But it was a very long,anticipatory three hours. Any minute we would meet our new doctor who would hold the keys to what the future looks like for my former preemie. She would be able to tell us why he isnt catching up, what this realistically means for his future, what we could do to help him. We were also having a follow up with our neurologist, a visit I perceived to be a quick, congratulatory, "Your son doesnt have brain damage" moment. One should never go into medical appointments with presumptions. I should know this by now, I have been on the NICU rollercoaster ride for two years. We talked again about life long disability, learning delays, neurological concerns. The magic number of age two did not hold the magic I believed it would, there was no moment of escaping his prematurity. Rather, we had a moment of fully recongnizing his prematurity would still continue to cause issues for him, most likely long into the future.
I came home exhuasted, from trying to entertain him, from information overload, from added therapy and homework assingments, from a little boy who screamed most of the way home, from rush hour traffic and from the internal battle of what I should feel as compared to what I do feel.
I should remain in hope, in promise, in faith, in gratitude. Can I do that while I also feel so aware, so very aware, of loss, of struggle, of injustice, of guilt? My faith seems to have changed from believing he will be completely healed to believing I will be equipped to be what I need to be his mother.
I'm struggling to adjust to menopause at 33. My mind and heart have been wrapped in that, in all that I've been hit with unexpectadly in that sphere of my life. Sometimes it feel as though it is too much to balance, I dont want to juggle a bunch of balls. Really, I would rather put the balls on the shelf and take a nap, a summer siesta. There's pressure to stay strong for my girls, for my husband, for others and then there is my cry to breathe, to be held, to be allowed to be who I am now,not who I was two years ago. Let me be, please just let me be. Let me be sad. Let me be angry. Let me be lost. I'll find my way back. I just need a moment.
It's like a great hike in the mountains, when you just want to sit for a minute and catch your breathe on a fallen log. I dont need you to carry me out of the woods. I dont need you to give me a map of the best way out of the woods, your way out of the woods. Just let me be, let me sit, let me feel the aches of my body, let me look at the mountain looming ahead and let me figure out the best way out for me. You can wait with me, sit with me, as long as you sit quietly and recongnize this is my walk, my woods, my journey.

2010-07-26T19:57:00.000-07:00

I feel as though I have had a padlock on my thoughts lately, on my emotions. It's been five months since my hysterectomy and tonight that word seems to taunt me, bully me. My 33rd birthday is next month. I will celebrate it with my twin. I will be the one without a womb, with raging hormones and crashing moods, with short term memory loss that sometimes terrifies in it's suddenness and intensity. She will be coming into this birthday with her own loss, her own heartache but that's hers to share. My emotions seem to be on display tonight, no longer willing to be hidden or dismissed.
Friday morning my Vanny had a play date with a sweet little friend from church. I had been to the little girl's house several times as her mother and I are friends. I drove Vanny there that morning, waited until she was settled in and playing nicely and then headed out on errands. On my return trip to pick her up, I became so disoriented and turned around. I could not find her house or even remember what street it was on. I, who pride myself on calm in crisis, became panicked and also began to beat myself up rather harshly. This new sense of disorientation,forgetfulness, mental fog; it's not me. Well, it wasn't me, five months ago. I was finally able to find Vanny at her friend's house, after a major freak out. If I had taken a breath and calmly, rationally thought about it I would have figured out that a panic was unnecessary. I could have returned home and looked up her address in my email, or called a mutual friend to find her. I see that now, I realized this fact hours after the play date actually. But in those moments of confusion, I was distraught and self-loathing and angry. Angry that my body's lack of hormone regulation is such a pain in the butt to me. Eloquent, I know.

I no longer have periods. I have mood swings, hot flashes, cold sweats, periods of emotionality that are atypical for even me. I was discussing birth control with one friend today, discussing fertility with another. And I think tonight, once the house was quiet for the night, my mind began to race with these words that no longer apply to me, fertility, periods, pregnancy, hormone cycles. Sigh, sometimes you just have to stop avoiding reality and work through it.

I feel like I whine in my postings and so tonight I will end this on a grateful note. I do not regret my surgery. I feel so much better physically now. Today I went for a run. Before surgery that action was incredibly uncomfortable. Once my hormones get all worked out, without hormone therapy, I will feel even better. The loss is not something I think I will get over but I do think in time I will be able to adjust.

woods

2010-07-21T09:36:00.000-07:00

Feeling melancholy today. Wanting a break from my day to day life right now. I want to pack all the kids up in my super cool minivan and head to the woods, a state park, somewhere outside. Somewhere I can feel the coolness of the shade trees, the smell of damp moss-covered earth, the sound of stillness or wind rushing through leaves, and just stand where I can be encompassed by something bigger than me, than my life, than my problems. The forest and the mountains are calling out to me today. They seem to promise peace, tranquility, fun, restoration, balance, escape. All things my soul is longing for right now.

Instead I will pack my diaper bag, shuttle the girls to a sitter and take Caleb to his fourth therapy appointment this week. Later today, after therapy, maybe a quick hike on the Tiger trail. Maybe that's all I need, just a few moments in the woods.

New Hope

2010-07-01T14:13:00.000-07:00

I haven't taken the time to update about our week. Caleb had his MRI on Tuesday in Columbus. It was a nightmare day for us. His test was not scheduled until late in the day and so he could not eat or drink past 6 am. He was hungry and tired and cranky and threw probably the biggest fits of his life, in the car on the way up, in the reception area of the MRI, and later while the nurse was examining him. We watched a video on the test, went over his history, signed the consent forms and then waited. They score every patient before the test and Caleb scored a four which requires an ENT consult and stand by during the test; if you score a five, they do not do the test.
I should mention that Jason and I were very anxious going into this test. Caleb has had procedures before but this one was probably the most nerve wracking. We were both remembering the moments after his last surgery when they brought him back to us and he went apnic and had to be bagged. He didn't do well with anesthesia that day and so we were nervous about this time.
Our nurses were wonderful and understanding to our screaming, fighting mad little boy. We had to help hold him down for the iv and it's always so hard for me. Caleb can't stand to have his hands or feet touched because he has had so many iv's and needle pricks. He's pretty sensitive about it and here we are forcefully holding down his arms so they can stick another needle in. Our nurse was skilled and was able to get the iv in the first time although she did remark about all of his scar tissue. She also said usually with preemies it takes the full dose of anesthesia because their bodies are used to fighting. I smiled and told her I was already familiar with Caleb's fighting spirit, you can't make this boy do anything he doesn't want to do. She was correct, it took the full limit of medicine to put him under. Jason said that was the hardest part for him, seeing Caleb so limp and lifeless, it brought back many memories. I think it was hard to reconcile those memories of a tiny sick infant to the vision of Caleb now big and stronger lying so still. The test took about 25 minutes, we were in the room with him. Afterward, Jason picked Caleb up and handed him to me and I held him until he woke up. I sat in a rocker with him, so soundly sleeping, and just enjoyed the moment of holding him. He doesn't sit still long nowadays for moments like that. The nurses started to urge us to gently wake him up because he wasn't waking up on his own. The gentle urging turned into moving him to an exam table, jostling him around, undressing him, wiping him down with cold rags, and finally a sternum rub to wake him. It took him much longer than normal to awake and we began to feel a little panicky. As soon as he awoke, he tore at his iv, and I said, "Ah my fighter is back." We stayed a little longer to make sure he could hold down liquids, were given our discharge instructions and were on our way out the door. Not twenty steps down the main corridor of the hospital and Caleb vomited everything down the front of me. He kept vomiting and so we headed back from where we came. The nurses kept us a little longer, changed our discharge instructions to not feed him for a few hours and for one of us to sit beside him in the car on the way home. He was very floppy from the medicine and his low muscle tone. Jason drove home. I sat beside Caleb who slept the whole way home. I rode home in my bra covered by a small blanket because my shirt was disgusting and I'm super classy. Our evening home was long, but we both did feel relieved that the test was over and although we had a few uncomfortable minutes we had no major drama, no machines going off because his heart rate was too high or his breathing was too low. Into the next day Caleb was still dizzy and unbalanced, he would fall over sitting in his crib. He wanted down to play but then would fall and he just was not a happy boy. Around one yesterday afternoon our phone rang and it was our neurology office. We were told to not expect results until Tuesday and so I was a little nervous answering the phone, not knowing what to expect. Can I tell you they took forever to spit out the results! The results were great, no evidence of brain trauma from birth or underlying condition. Our neurologist still wishes to follow us due to Caleb's delays but the news is incredible. I can tell you I feel so much lighter. I didn't realize how much anxiety I was carrying around. I have a renewed sense of hope. It often felt like all of this struggle would be neverending and now I feel it's only for a season. We aren't sure how long the season will last and there is still struggle in it but hope is an amazing, motivating thing.

I think, no, I know I am just hesitant to share, that I have released some of the guilt I carried for so long now. I might touch on that a later time; it's a new awareness I haven't quite processed fully.

So good news in our household. The news felt as good as when I discovered I was pregnant each time; new life, new opportunity, new hope. I feel like I have let go of some things and embraced more of the future I was fearing.

2010-06-28T09:41:00.000-07:00

Tomorrow is a big day for us. Caleb has an MRI scheduled, it's been on the horizon since a few days after birth, a follow up for most micro preemies, especially those that suffered brain bleeds like our little guy. In the last two years, I have hoped and prayed that as the time drew closer to the 2 year mark, the doctors would say the scan was unnecessary for our little guy. I hoped his development would be on track enough that it would be obvious he suffered no major ill effects from his birth. I've been holding my breath waiting, hoping just one doctor or specialist would say it was not necessary. Those words were not spoken for us, in fact the opposite, we were encouraged to schedule his test and follow through.

We saw the neurologist two weeks ago, a precursor to this scan. It was a difficult appointment for me because my hope seemed to be on a scale with my reality, which one would outweigh the other? It is not easy for me to hear and to speak of the lag of development in Caleb. It is not easy to hear how he does not measure up to other children his age, even other micro preemies. Development can be so broad, each child is different. However it is obvious how Caleb lacks in every area of development and it is hard to hear that he does not even compare to other preemies of his gestational age. It was very hard for me to have the conversation with our neurologist, although he is gracious and kind. But I also must say, and this may sound odd or even hurtful, at least at the neurologist office there is freedom for me to voice everything on my heart. I haven't been given that freedom much, to talk about my child, his disabilities, his delays, fears for his future, frustration for where we are at. I have many loving people in my life but often my voice is quieted, or my faith is questioned or criticized. And so for the most part I have stopped living out loud our story. I haven't blogged in I don't know how long. I still write, most every day but I do not share.
I sit here today with a quiet house, girls off visiting family for a few summer days and Caleb asleep in his crib. We wont have answers tomorrow but we will have at least started on a new path.
I can tell you I remember clearly the first moments I met Caleb, so tiny and so fragile, hooked up to so many machines, I never imagined the full ramifications of his birth. I vividly remember the doctors pointing to his tiny head and showing us where his brain was bleeding. I remember wanting to scream "Shut up!" The future seemed so far off with all of it's consequences and predictions and the now was so scary and real. I just wanted him to live, to breathe on his own. And it seems like along the way of his life, it's been like that for me, just willing him on to the next step, from breathing on his own to rolling over or sitting up or now walking.
It's been a struggle the last few months with his therapies; tiresome, frustrating, hard work. Jason and I feel as though in a way we are holding our breath for the results of this scan. Our neurologist has told us that even if we have positive results it still does not change the reality of our situation. Caleb is still severely delayed, testing at the one year mark for a boy who will be 2 in six weeks. Caleb will continue to battle and have to work through his delays. Even if we have a positive result from the test, there will be no reprieve from his therapies for a long time. There are days when the results matter very much to me and other days when it does not matter so much. I feel like I have been waiting and anxious for a very long time, wondering how severe the ramifications of his prematurity would be, longing to know into the future.
Caleb has been sick for almost a week, battling a fever and an infection. In fact, we thought we may have to reschedule the scan. His fever broke this morning and so the doctor said to go ahead and come. It's been awhile since Caleb has been really sick and I had forgotten how much my world is rearranged when he is sick, shuffled, prioritized, shelved.
I believe my frustration and my weariness are present in my writing today. And yet I will still post this.

admitting discouragement but not defeat

2010-04-15T14:48:00.000-07:00

Today in a conversation I spoke words and conveyed an attitude as a mother for my child for which I am not proud.

"He should be walking by now. My arms are sore from carrying him everywhere." As soon as I said the words I wanted to hit reverse and put them back in my mouth or better yet delete them from my train of thought, from my heart. These words, the frustration behind them did not come from the beautiful part of my mother's heart that fosters and nurtures. This sentiment, this feeling came out of my own selfish need for progress, even more so out of frustration and the need for relief, respite.
Caleb took his first steps over a month ago. Since then he has taken a total of seven steps on his own, most often refusing to walk or even try. In that time frame he also spoke his first words, "dadda and mamma." We have also heard "Sissy" and what sounds to me like "Nca", for Seneca I believe. The words are few and far between. My ears are fine tuned to hear babbling and cooing or actual vocabulary but often hear screeching instead. He is one stubborn little boy who chooses to do things his way or no way. Yes,this sounds exactly like me and I know his tenacity is part of what has kept this little boy fighting against all the odds stacked against him. It isn't easy to always celebrate the tenacity when it manifests itself in jelly legs and tantrums or outright refusals to cooperate. I've been discouraged lately; even had late night and early morning confessionals to close friends questioning my stamina, my patience, my endurance, my mothering.

The future right now seems daunting to me. In the last months we have heard new words, new possibilities for surgeries, new treatment options. We have started new therapies, added more to our day and our week. Just yesterday a nurse called to move up some of his testings because the doctor was suddenly concerned about his development. New words like autism, like plateaued development, words are also being reintroduced, recirculated: lifelong disability, brain damage. I love words, I embrace them, enjoy studying the meaning of words and how they play off of each other, mingle,express ideas and emotions. Right now though I would like to shut the words out; not have them floating around in my head. Also at this moment the words that most often come to me are tired, angry, frustrated.

Tired of waiting, tired of answering questions, tired of hearing cliches, physically tired from therapies and appointments, tired of carrying my baby boy who is now a toddler, tired of battling him when I just want to cuddle him.

angry at doctors predicitions and pronouncements, of the callous way they throw things out that aren't certain, of how they encourage me to prepare myself, angry at comparisons, from others, and from my self. angry at how my life has changed so much.

frustrated in this cycle of waiting and hoping, frustrated that my role as a mother is more challenging than it has ever been, frustrated in others judgement and abandonment or denial

I am also angry and frustrated at myself for venting, for being honest, for putting my frustration out their voiced in a way that it sounds like criticism of my son. This is not the place I want to be in right now. Another few months of waiting, of wondering, of watching. May, June, July...we have appointments and tests each month. Each month we will learn more and more. It's like putting a puzzle together slowly. Each month that passes his doctors and therapy team seem to see as a marker or an indicator for problems, underlying issues in his development. They keep saying by this time he should be doing this, doing that. And I want to say just stop, stop doubting my son. He beats the odds, he fights. Stop discouraging me. I am not ready to be realistic because nothing about my son is realistic, he was born breathing on his own, screaming even, he has my fight in him and his own.

I love spring, I love the freshness of it, the hope of it. The chance for rebirth in flowers and trees, for growth, for beauty. When what seemed lost or stark is painted in a new light. I feel the need for that in my life right now.

Siblings

2010-04-02T12:40:00.000-07:00

I took all four of the kids to the zoo yesterday, by myself. It was a beautiful spring day full of sunshine and laughter and only a little bit of whine and bickering. It was Caleb's first trip to the zoo, a place I have always loved to go, and he loved it as well. He is such an interactive, engaging social boy, he ate up the crowd, the activity, the interaction. The girls were sweet and helpful and excited to see their own favorite animals and ride the carousel. I thought I might become overwhelmed with keeping track of all of them, handling their needs without becoming grouchy myself but really it was lovely.

The only hard part came when others would remark on Caleb's cuteness, ask the expected question you ask with a baby, "How old?" When I would answer with 19 months, they would look startled or surprised and even a few wanted to know why he wasn't walking or talking yet. One lady in line behind us at the carousel, even suggested if I just put him down and didn't cater to him, he would walk. Some people, right? Oh I see the babies all around younger than he, laughing, babbling, reaching for things, toddling, standing alone, walking. Even just a few weeks ago, the comparison would have made my heart break, sink further into my chest into despair, envy. But to see him yesterday, his delight in just sharing the day with his sisters, his easygoing, engaging smiles to me and strangers, I couldn't despair. I couldn't be jealous. He has a harder road, more of a struggle but he is my delight. This sweet little stubborn boy who works hard, and loves even harder. He stood up, supported of course, at the aquarium, intently watching the manatee and the fish swim by. Excitement and joy in the simplicity of nature, of fish swimming by and waves and people all around. He leaned back into his big sister's arms and reached up to touch her face and it made me want to cry. I am so blessed with children who love and support each other, rely and encourage one another. The girls took such joy in just showing things to him.

It's been a hard adjustment to make, this new status of a special mom. I struggle with my own inadequacies and fears often. Am I capable to provide everything he needs, the girls needs? What about my own needs? I struggle with frustration and misunderstanding, with feeling overwhelmed and alone, drifting sometimes. But yesterday I caught another glimpse, another reminder of hope and maybe even provision.

I have siblings who have seen me through the rockiest times of my life, shared in the ups and the downs. Yesterday I saw my children demonstrate their own bond, their own willingness to love one another and support each other. It's a little bit of a relief for me. I do my part as their mother and I also do my part to encourage and not halter their bond. I can relax a little in that because I have my own sibling track record. My siblings are some of my closest confidants, my greatest cheerleaders, and also the truth tellers of my life. We can annoy each other, rarely am I the cause of this, guaranteed, but in the end we are in each others' corner. I see this with the girls and Caleb. My goal is to continue to foster it and not impede on it.

My girls have this selfless love for Caleb, it is truly an amazing thing. I hope we can always find the balance and not fall into the trap of catering to Caleb too much but for now I am so thankful for their sweet, loving hearts. I am a very blessed girl.

my public service announcement about twins

2010-03-24T07:14:00.000-07:00

What do u struggle with most? Someone asked me this question and the answer for me is immediately forthcoming. I struggle with being a twin. A surprising statement to actually voice, shocking almost when you consider my relationship with my identical twin sister. We often joke that we are each other's soul mate, we talk of completion and total understanding, of being joined in such a close inexplicable bond. So struggle seems an odd sentiment, it doesn't correlate, how can such a bond be categorized in any way as strife?
I do know that part of the strife does come from the closeness of our bond, our dependency on each other. When you feel such a connection with one person it can be very easy and even unintentional to shut others out. Why take the time and effort to explain yourself to others when someone else understands you with an ease and such grace? Quickly other relationships can feel dimmed under the spotlight of such dependency and attachment. Boundaries are necessary but are not always easy to set. This dependency is a new part of the struggle. For a very long time I was content in this reliance, this beautiful if unbalanced friendship and bond. Only in the last few years, when my life has been on such a shaky foundation, have I realized the drawbacks and the effect of our closeness on others. I haven't fully invested in other relationships or in attempting to foster closeness with others I love. The realization of how my twin relationship affects my other relationships has created a need for balance, thus creating struggle.

My struggle of being a twin cannot solely be attributed to dependency. My struggle has always been in finding myself, defining myself, setting myself apart from someone who looks almost identical to me and acts very similar in many ways. The balance in embracing our similarities while drawing out our differences has been hard for me. Often I have went to one extreme while others chose the other extreme. We are categorized as "the twins." When together the focus is most definitely on our likeness to each other. Often people assume we like the same things, feel the same things, want the same things. I can't tell you how many times we have received the same gift or compliment. Often as children we were dressed alike, our identicalness was celebrated and fostered. And while this happens, I find myself going to the other extreme, screaming out for my own identity, place. I've talked about it before, her zig became my zag. You want long hair, well then mine will be short. You want girly-girl appearance and make-up and dresses, well then I'll do natural ponytail and jeans. These are simple things but often I went to extremes. Overachiever/slacker. Compliant/Rebellious.

For years I felt I lived in her shadow or in the shadow of our twinness. I would guess in ways she has felt the same. Even today at times I feel it. I wonder when I feel it now if it is just remnants of past thoughts and emotions. Yesterday someone remarked that they didn't know she was a twin. I thought how odd, we are truly living separate lives now, in different cities. How odd that something so key to my identity is not known or visible by everyone. Someone else remarked how much my oldest daughter looked like her. I thought "Hey wait a second, she's my daughter." Logical? No, I know when we both look so similar but it did rub me a little wrong. My pride, my joy, my sweet daughter;link her to me. Illogical, the thoughts of a twin sometime.
The struggle to be noticed and not just noticed but celebrated for who you are while not being compared or measured to someone else has always been my fight. I shared a room, a closet, a life and everything it entails with someone who became my own personal measure of self-esteem, beauty, acceptance. We shared friends, experiences, secrets, clothes, a bathroom. We still share all of those but a bathroom. We still spend hours talking, still sometimes late in the night. She is always one of my markers for joy, the one I laugh with over silly things, the one I cry to and confess to. I'm truly blessed to be able to call my sister my closest friend. I'm thankful that the competitive atmosphere of our friendship is rarely present now. My choices now are my own, not brought about my knee jerk reactions to distinguish myself as separate. I still cringe when I hear someone call us the twins though, even when they say 'the gorgeous redhead twins.' (I may have added the gorgeous part but I love descriptive words, the more the merrier!) I want to say we are so much more than what you see as us together. We are individual and deserve to be recognized for that.
So in reading this I am offering you a public service announcement. When you see twins, do not, I repeat, do not call them twins. Take the time to learn their individual names. :)

A step in the right direction

2010-03-11T17:01:00.000-08:00

Man, I am struggling tonight. It was a very busy, full day, an emotional rollercoaster of a day as well. And I am reminded tonight about how life is about moments. Moments that shape you, mold you, change you, reform you or sometimes even break you. We don't get to pick the moments I have learned that, but we do get to pick how we respond.

I spent the morning with a room full of lovely girlfriends. I held a sweet little baby, who was not my own, hugged an almost-due beautifully pregnant friend, listened in on other conversations of friends voicing their desire to have more babies. Celebrated with a dear friend's joyful news, and talked of how I am feeling post-op, physically, emotionally. Then had lunch and headed off to my first post- op doctor appointment, a room full of beautiful, abundant, glowing pregnant ladies and a few late in life ladies. I sat with the late in life ladies. I read a senior magazine on bone density, I couldnt bring myself to look at all the Pregnancy and Conception Magazines. I texted my sister, sending out a plea for a lifeline. Quick, make me laugh, distract me, pray for me, save me from myself right now. Then they called my name and off I went to speak with my fabulous doctor.

It was a great check-up, I have to say I have bounced back rather nicely. But he had pictures and discussion for me. Oh I was expecting it but still so not ready for it. My hysterectomy was a direct result of mistakes made from my c-section; I think I have shared that before but if I havent, there it is. And I saw close-up in color pictures of the mistakes, pictures of my damaged womb, my damaged ovary and tubes. And I learned the damage was more extensive than I had originally thought. I dont mind gore, blood, organs, tissue, doesnt bother me in the least. But I have to say seeing my organs and the damage was shocking, upsetting. I have a wonderful surgeon who was able to repair what he could and remove what he couldnt. I am caught up in the removal, in the loss, in the senselessness and the carelessness of it. Preventable, all preventable, and I am not sure how to wrap my mind around that. But you see today I was reminded life is about how you react to the moments. The damage done to my body was in a moment, in that same moment I received the gift of a miracle, my beautiful baby boy. Oh I have heard it so many times over the last two years, "Just be glad you have Caleb, focus on that and dont worry about the rest." It's so hurtful when someone else recommends, even sometimes demands, that you move on. But it is beautiful and freeing, when you, your self can move on. My moment was at least two-fold, loss and blessing. What an interesting dynamic to come to terms with.

I told you of the pictures, I have several sheets of them. My doctor was kind enough to make me copies. I had them on the counter at home. Seneca was fascinated by them, asking what organs were what and where the incisions were made. Sierra was disturbed and covered her eyes and could not look. And my sweet Vanny, standing in the middle of both of them, stealing glances and then hugging me after each look at the pictures; my reassurer. This scene with the girls, struck such a chord with me. I've been like each girl in the midst of this struggle. Most often like Sierra, not ready to fully deal, avoiding. Sometimes like Vanny, diving in for a look, for a reality check and then pulling back, all the while reassuring myself and others. And recently more like my logical, realist Senny. Let's look it in the face and see what we are dealing with, no fear, no disgust, just focused interest and introspect. A key to moving on, at least a step in the right direction.

I'm so thankful I have beautiful amazing friends who share their lives with me. I am so blessed by my wonderful girls and the promptings they give to my spirit on a continual basis. I am amazed by the gift, the miracle of my sweet boy. It makes dealing with loss and ache much easier.

Not just the pretty girl in a dress

2010-03-08T09:58:00.000-08:00

Yesterday, I wore a dress and high heels and make-up and hairspray to church. I looked great and felt misleading to some extent. I'm such a jeans and t-shirt kinda girl, I probably wear a dress or skirt six or seven times a year, hairspray even less! Because of my surgical incisions, I did not want to wear jeans yet, I was concerned the waistband would rub against my stitches. So my choices were sweats (and only rough looking ones because the others were unlaundered, aka dirty) or a dress. Now to be completely forthcoming,I could so get by with sweats at my church, it isn't about a dress code there. In fact, I think in the past I have worn sweats on days I was teaching Sunday school and I do tend to rock my WVu sweatshirt in the fall after great victories. I chose the dress and the hairspray and lipstick and heels because I wanted to look nice, more than nice, womanly, pretty again. Realizing in some ways this surgery has robbed me of some of that feeling of womanly or youthful confidence. And before you start to think I am completely shallow and vain for spending a paragraph on what I wore to church, hold on I am going somewhere with this.

I wore the dress most of the day, rocked the dress, but the whole time I was in it I was internally crying out for my jeans and t-shirt. (and flip flops; the weather was springy yesterday!)

In a way the dress felt ingeniune, something I put on that did not represent me, embody me. Now I am a girl who doesn't struggle too much with body image issues or beauty issues. I am quite comfortable in my skin, not constantly comparing myself to others. I know I have flaws but I tend to focus on my attributes. I am not sure how or where I picked up body image confidence; my struggle is more with personality insecurities. I was completely comfortable with how I looked in the dress, that wasn't the issue. What was vexatious about my appearance yesterday was that I felt like it was not a true representation of me, or it wasn't the me I wanted to present. I wanted the ponytail and the fresh face and the jeans and flip flops.

Those features or items speak comfort to me and I am all about comfort in every aspect of my life. I desire to be cozy and warm. But more than that I am a giver of comfort, of calm. Several years ago I recognized I had an inclination to encourage people. I can very easily walk alongside individuals and support and cheer for them. I believe it is a gift I have that has helped in many of my relationships. It has helped to make me a good mother, a good friend, even in management when I worked outside of the home. I think it even comes out in my writing. I have this desire to see people where they are, love them there and encourage them to strive for more and believe for more. So for the past five or six years I have worked on this gifting or this personality trait. I am an encourager, it is a central part of who I am. I will also go as far to as to say the last four or five years most of my encouragement has pointed people towards my faith, towards Jesus, towards hope in a living,loving God.

I sat in church yesterday in my fun wrap dress and heels, feeling completely at a loss of who I am, feeling unauthentic, even in my dress, but more so in my faith, in my personality, and in my life right now. Struggling with a desire to still want to encourage others; yet I am so disheartened in my own faith and the reality of my life lately. I would not go so far as to say I am faking anything. I can still feel beautiful and fun in a dress. I don't believe I am faking the faith either. My faith is still there, it just seems so distant and marred right now. It's more than a choice of dress, it's more than a discouraging feeling.
Who am I as a mother, a friend, a daughter, as a woman when I am in the midst of struggle and unquiet in my faith, in my life? Me who gives calm and quiet, who points towards peace yet doesn't feel the peace herself?

I know others have solutions for this, some answers have touched me, others aggravated me. I feel a pushing and a pulling along as if someone else can just drag me back into an accord. Right now in my life there is struggle and dissatisfaction and anger and frustration, loss. I guess the thing I can still pull from my faith, still rely on is that there is hope. All of this will be worked out but I get to be who I am, in the midst of my struggle, in the day to day of my life, all of who I am,not just the pretty girl in a dress.

http://holdonandbelieve.blogspot.com/

Post op

2010-02-25T11:49:00.000-08:00

I took a very long shower this morning, hoping the hot water would help some of the aches and pain I am having. I am almost a week into my recovery from surgery and doing rather well on most days, most hours of the day. I think today I have had a minor setback, I attempted to do too much activity yesterday and my body is protesting.
I have been sore and I tire easily, I am also slightly stir crazy and antsy. My mom has been here taking care of the kids, of the housework and beautiful friends have been bringing dinner nightly. I have felt my body responding to the rest, to the medication, felt it start to heal and repair. Today as I stood in the shower I realized it was the first day my abdomen was not swollen, the bruising is starting to fade but not the scars. It's so funny, I was so upset after my c-section about my incision scar. It was devastating to see it, I hid it from others. Now I have four new scars, all much smaller, but still present. The girls all grimaced when they saw my stomach, black and purple with three new bandages and a very funny looking belly button incision. "Poor mommy," Vanny said..."and this time you don't even get a baby for the cutting on your stomach." Her tender heart, her sweet little innocence, and the truth of her statement. No more babies for me, just bruises and scarring.
More than anything I have pain where my ovary was, I am not sure if it is just physical or also emotional pain. I have been so tired that I haven't spent much time on the emotional damage from my surgery. But I know it's there. Standing in the shower today, noticing my abdomen and my scars, new and old, I felt loss and sadness. My c-section scar for so long was a vivid reminder of how my life was quickly torn, changed. The scar was jagged and long and ugly, jarring every time I glanced at it. The scars from my hysterectomy are smaller, more methodical and planned. In some ways that helps. I had no control over the damage done to my body from Caleb's birth. I could never resent actions that saved my life and my son's, but the method and the unskilled, rushed manner in which his surgery was done, I did resent and cry over. Weep over. I chose my surgeon for my hysterectomy, I chose my hospital, I chose how much and the procedure for the surgery. Obviously there were still a few unknowns going into the surgery but nothing was rushed or chaotic.
When I woke from anesthesia after Caleb was born, all I could ask is if he was alive, over and over. When I awoke from this last surgery, I asked the nurse over and over, "Did he take both ovaries or just one?" I was fuzzy and having a hard time remembering, she told me she was going to write it down because I asked so many times. Obviously wanting to know if my son lived is more critical, more important but both questions to me speak of life. I did not want to lose both of my ovaries, I felt it would change my life in a manner I was not willing to embrace at 32. Thankfully, luckily, I did not lose both of my ovaries. Only one and both of my tubes and my uterus but I already knew that, I ad already accepted the loss of my uterus. I knew going into the surgery, that my womb would be gone, I was willing to accept that loss because I knew it was necessary. I was not willing to accept the loss of both ovaries, of the instant onset of menopause. I was so worried about how it would change me as a young woman. The loss of both tubes was slightly shocking, I had to say, "wait, what?" a few times in recovery. It seems a little silly now, why worry about tubes if you don't have a womb, if you cant carry a baby anyway, anymore. It was more just wanting to hold onto anything womanly of me that I could, anything that was not damaged from my c-section. So everything is cleaned up, in a manner of speaking. My hope is that as I heal from the surgery, no more issues or pain will arise. In a few months, a year, I will feel completely better and it will all be a distant memory. I wont feel damaged on the inside or still in pain from a surgery that happened almost two years ago. I hope, as friends who have had hysterectomies have shared, that I will feel better than I have ever felt. My c-section scar is still there on the outside, even though most of the internal scar tissue has been removed. I seem to grow more used to it each day, it isn't quite as jarring and obvious, it's just another part of me. I hope the same will be true for my other new scars as they heal and fade. I do feel a sadness and a letdown about the need for a hysterectomy at 32 but reaching a point of acceptance is a little easier than it was after my c-section.
I really feel I could go deeper into examining and explaining all of this. Both surgeries were life-altering to me. I am sure as I continue to heal I will revisit these thoughts but right now although, sore and very tired, I feel a sense of relief, and a sense of appreciation for my body. I have carried four beautiful children, I am very blessed. That part of my body's job description is over but I still get to be a mother who carries them in her heart and soon, as soon as my stitches heal, in my arms again. I still get to be a young woman who loves and nurtures and nothing can change that.

Big day

2010-02-18T21:05:00.000-08:00

So I am getting ready for bed, very BIG day tomorrow. I felt like I had to take a minute and recongnize it. I have to be at the hospital even earlier now, my surgery was pushed up. I will be leaving my house before six am. I know crazy, I am so not a morning person! I have spent more time today prepping for the surgeon, well surgery, than I have ever spent on getting ready for a date! I painted my toenails red today, an outward sign that my sexiness was not going to be lost by the removal of a womb or ovaries. Guess what, you cant wear nail polish into surgery. Guess I should have read my pre-op instructions a little better!

I spent the day running around like crazy, nervous energy was very high today and helped me accomplish much. I organzied my laundry room, did six loads of laundry, baked muffins, made 2 meatloafs plus dinner, and several other things. I also spent the day soaking up time with the kids. Caleb was cuddly and in want of me all day. I talked with Vanny for a long time about her favorite subjects, Mario, Luigi and Princess Peach. I posed for pictures for CC. And my sweet little Senny Sunshine could not let me go earlier. It was dreamy to hold my second grader on my lap and cuddle. She is very logistical and pragmatic, so of course she wanted to know what happens if surgery doesn't go well. Thanks Senny, just what I wanted to hear. But, I smiled as I searched for the right answer to give because this is my Senny, my realist. Gosh, she is so much like me. I didnt have a right answer, all I could say is that I trusted my doctor and I trusted that God was watching over us. Simplistic and honest answer and so now at 12:14 am I am going to go to bed believing that statement as well.

Well ok, I am going to bed as soon as I switch my sweats over to the dryer from the wash. It's sweats for me for a few days or weeks. Good thing I look great in sweats because for a girl worried about losing her sexyness sweats dont usually do much for the self-esteem!

I have great friends who have sent prayers and emails and love. My mom is here to care for Caleb tomorrow and the girls as well if school happens to be cancelled again. My dad drove down just to see me, well mostly his grandkids, but it's nice to be loved like that. My brothers have called, my sister has calmed my nerves and made me laugh a few times today. And Ja will be driving my crabby, sleepy, nervous butt to the hospital bright and early. I am hoping it is an easy wait for him, I know last surgical time it was not.
Thanks for all the well wishes everyone!

safe place to fall

2010-02-16T11:38:00.000-08:00

A friend of mine told me to just relax and get through this week and so I am trying...It's hard, it is a struggle because I know my life is changing on Friday. My life is also about to be put on hold for a few weeks as well. I am not sure if I want to embrace change, avoid it, or fight it. I am attempting to not avoid it but I am not fully embracing the change that is imminent.

My surgery is Friday. It came together rather quickly. Yesterday I went to the hospital for pre-operative testing. I also sat my girls down and explained as well as I could what was about to happen. It was a hard day. My girls have surpised me, they are handling things much better than I expected. It helps that their aunt has planned a lovely, fun weekend for them so they should not be too distracted with worries over their momma.
Walking into the surgical unit yesterday did a number on me. I had to go in the bathroom to regain composure, I even had to call Mar because I couldn't calm down. I caught a glimpse of two doctors coming out of surgery and all these horrible memories flooded me and panic set in. I could not catch my breath. I calmed down enough for my testing, fun fun needles, and received my pre-op instructions and I was out of there. I decided to call my surgeon and he was able to further reassure me. Sometimes I think you just need to express your fears and concerns and have someone listen and respond honestly. No brush-offs or diminishing of feelings and fear, just the ability to be heard; it is amazing the feeling of comfort that can bring.

I was panicked about the actual surgery more than anything. I was concerned about all that could go wrong, the chaos that could happen, the indifference that I have experienced before, the painful recovery, the time of feeling desperately alone and afraid. Those concerns are now, if not fully relieved, at least mostly. I trust my doctor and I have expressed my need for kid glove treatment. I cannot cope with rushed and indifferent medical staff again.

Now I am not panicked about the surgery. Also, I am not overly fearful of the ramifications of a hysterectomy to someone of my age. I am aware of the risks but I am more hopeful that surgery will help than fearful the surgery will harm.

And so I am not sure why I am sitting here today struggling with the thought of change. For so long, the last two years, I have had to be strong, it was necessary for my family. I am feeling incredibly weak and anticpating the need to ask for help and rely on help and stay in a position of weakness and dependence. I am not embracing this change. It's against my nature to accept help, I dont even like for anyone to help me figure out a move on Spider Solitaire!

I am looking forward to my mom coming down. I have planned out the menu of my favorite foods for her to cook. There is nothing like my mom when I am sick. But I cant seem to get past that easy physcial need to giving in and giving over my other needs. The need for comfort, the need to be heard, the need to be taken care of, the need for the kid glove treatment. It's hard for me to relinquish those needs into someone else's hands. I have always been very good at taking care of myself. I like being capable and not needy. But now I wont have that luxury, at least for a few weeks. Someone else will be doing Caleb's therapy and carrying my baby boy. Someone else will be comforting and cuddling my sweet little girls.

I am sure all of it will be frustrating for me. I am not the best patient. I am not the best student. I spent today cleaning up my bedroom, finding movies and books to occupy my time while I recouperate, attempting to make my bed a safe place to rest, hoping I will have a safe place to fall.

The acceptance of a friend

2010-02-09T05:08:00.000-08:00

I have this friend, an amazing girlfriend I have known since second grade. We were acquaintances, classmates until our senior year of high school. That year we took an AP Biology class first thing in the morning. It was an interesting dynamic, 3 girls, 3 boys and probably the best high school science teacher out there. The class was competitve, the coursework was challenging and in that atmosphere our friendship blossommed. At times we excelled, other times we slacked off together. We still talk about that class, about that year and how it solidified our friendship.

We went our seperate ways for college but still remained in contact. She was there to celebrate when I became engaged, complete with complimentary and embarrassing blow-up doll and other silly gifts. She was there the day of my wedding, the one who did my hair and make-up and made me look gorgeous. She was also the one driving me to the chapel, asking if I was sure and offering a last minute trip to the beach instead. You may think, well that isn't supportive but I would strongly disagree. For me this girl, this friend, was saying, "No matter what, I am here. Nothing you could do would surprise me or shock me out of being here for you."

Loyalty and honesty, the two traits that have carried our friendship throughout the years. I chose the marriage/mommy route and she chose the career route. The two are not mutually exclusive but they were the roles we chose to play in our lives. Our lives became busier, we didn't talk every day or even every few months but there was always an ease when contact was made again. We could pick up right where we left off. There were no expectations placed on the friendship.

Flash forward to the birth of my first daughter.  She was born in the middle of the night. Jason left early in the morning, around 5 to grab a bite to eat and refresh himself. I was in the hospital room alone with my baby for the first time. I began to panic, feeling an unnerving amount of fear and insecurity about my new role as a mother. How in the world was I going to manage caring for a tiny little baby? Overwhelmed with my feelings of ineptness, I picked up the phone. I could have called my mom or my husband but I knew exactly who to call. I dialed her number and woke her at 5:30 am to share the news. I still remember to this day our conversation. After a few minutes of adjusting to the early hour, she was so reassuring and sure of me, more sure than I was at the moment.  And I knew I could trust her, trust her judgement.  I began to relax and trust in myself and embrace this new role of a mother without insecurity.

Our friendship is not one sided; she would be the first to confirm that. I have also received my share of phone calls over the years from her. I hope I have given her the same sense of understanding and acceptance that she has given to me. Occasionally we are lucky enough to get together for drinks or dinner but these are few and widespread moments. Our friendship survives on phone tag and a willingness to be flexible,honest and open.

Just yesterday we talked and we laughed and shared stories. I told her of my latest confessional. I may not be the feminist I thought I was! I uttered a phrase over the weekend I never imagined I would say. In frustration I told my husband to..."be the man already and make the decision!" I think before I had even finished the sentence my face was red and I was trying to pull my words back in.  She and I laughed over this statement but we also discussed it in seriousness. I needed to say that I was feeling a need to be taken care of.  Gulp. Cringe. Release of control. I can laugh about it now but in the moment I was appalled at my statement, and my husband was equally taken back.

I dont know if anyone else can relate but I have a hard time relinquishing control. I also put immense pressure on myself to be strong, to be on top of things, to be in charge. In that statement, so against my nature, I was expressing a need for release. I am struggling with the dynamic of change and control right now in my life.   The desire to have struggles taken care of for me, although agaisnt my nature, is very strong for me right now.

It was not until I could talk and laugh with a friend that I gained new perspective on this need for rest in my life. At first, I struggled and rebelled against admitting this desire.   I was embarrassed and slightly irked at my weakness. However, through laughter and openness with a friend I was given fresh perspective and was able to stop judging myself and breathe a sigh of relief.

It isn't weak to admit when you are overwhelmed. It isn't weakness to ask and accept help. It isn't weakness to relinquish control and expectation to someone you trust and love. Often times for me the control is more about remaining safe and avoiding vulnerabilty. I feel completely naked and vulnerable in my life right now; in my role as a mother and also just as a woman. Circumstances and events have troubled me, rattled me. In talking with my friend, in being unguarded and truthful, I was able to feel a sense of relief, a reprieve, and a validation of my self.

Sometimes I think we just need someone else, someone outside our situation to provide fresh perspective, new insight. It's wonderful when that person is a friend, one who says, "Nothing you can do or say would shock me out of being here for you!" Life is much easier when you can be vulnerable and real and still be supported and accepted.

www.holdonandbelieve/blogspot.com

Lessons from a five year old

2010-02-04T09:16:00.000-08:00

My five year old is fiercely independent and headstrong. I am putting a positive spin on what I want to call stubborness today. I've spent the morning arguing with her to cooperate in every aspect of my schedule and goals for the day. She is not normally uncooperative, unless of course she has a different agenda or ideal for the day. She can be very single-minded. This vexes me. It also inspires and challenges me. I do not wish for her to be disruptive or adamant but I can appreciate a steadfast and strongwilled approach to one's own wants and needs. She would be hardpressed to settle for anything less than what she expects or wants. She does not give in to tantrums or fits, I do not allow that. But she presses on, persists, is not discouraged, does not settle. I love that about her. I want to encourage her to not settle, to be unrelentless in the pursuit of her own desires. More so I am sure because she is a girl, she is also a third child, the baby girl. It would be very easy for her to just follow patterns set before her and fall into others expectations of her but she never has.
Today it is presenting a problem because I cannot allow her to go to Caleb's appointments in her underwear and she is adamant that it is naked time. It has been one battle after another this morning. I am seasoned enough as a mother to know you pick your battles. I found myself this morning entirely frustrated with her stubborness and wanting to stifle that will in her. But I will not. I will challenge her to be flexible, to bend and not be so rigid, but not to break. I will challenge myself to not quickly and easily turn to the negative spin of the situation or the character. I am not like her. I easily bend.
I have moments of "I won't back down" attitude but for the most part I am laid back and flexible.

I do not have a need to rock the boat, I have a need to make sure everyone on the boat has a life jacket on and is having a great time. I am not discrediting that role. I appreciate my nurturing aspect. Others I would guess just want to be on the boat, enjoy the ride. Others still, like my Vanny want to steer the boat.
Today I am challenged by my five year old. The nurturer in me wants to value her character and personality as it it is. The disciplinarion and logistical person in me is having a hard time rising to the challenge. Somedays it seems like such a fine balance!

http://holdonandbelieve.blogspot.com/

attepmting to step out of a comfort zone

2010-02-02T07:44:00.000-08:00

"Define sucess first and the rest will follow." This piece of advice is sticking with me, even into the midmorning, rushing around aspect of my day. So I will try to figure out what it means in relation to me.
I am attempting to challenge myself this year with my writing in general and my blogging specifically. I have always loved to write, to read, to invest in stories from others and to view my own stories in print. There is something so real and alive and honest about the written word and the sharing of ideas that speaks to me. I would spend hours in my room as a child and teenager just writing; short stories, poetry, journal entries, letters to friends and family. Often, my mother would make me write out my feelings or words of apology and explanation for my behavior or attitude. I resented doing it at the time but I believe it helped savage my moody relationship with my mother. Emotions I could disguise with my attitude and actions, I could never disguise in my writing. I find that still true, when I write the walls do come down. I find it harder to voice emotion and explanation and struggle in conversation. However, it is not as difficult for me to face and share these things as I write.

I had a friend challenge me the other day after reading a blog post, stating that a sense of hesistation was still present in my writing, in my blogging. It was noted that I tend to stop short of fully exposing myself, I am still in part disguise. I knew it, I sensed it, I just was not aware it was obvious to others. There is an absolute hesistancy in my writing and my sharing. I, like most people, feel a need to safeguard myself and avoid vulnerability. I am attempting to challenge myself to break through this resistance and avoidance of authenticity and honesty.

What I have discovered in the last two years of my life is that there is great beauty and growth in true vulnerability. I have experienced incredible moments when my words, and my sharing have touched others and helped others.  Moments of relatability and openness that have helped me realize that no one is ever alone and that life is not lived in a vacuum, that we are meant to share and help and struggle together.
I think of a great verse from Isaiah 61, "...beauty from the ashes." This imagery has always touched and inspired me, that out of destruction and despair, beauty and hope can be created. Any beauty that has come out of my life is a direct result of God's grace, not my own power or work. I am attempting to go forward in my life in all aspects. There are days when the ash in my life is so evident, it sticks to everything, distorts and grays everything. Many days when I wonder what beauty will come of all of this; and when will the beauty be more evident than the destruction?
Today that advice is sticking to me like a taunt or a challenge. How do I define sucess in my writing? Popularity, nah. Appreciation, maybe slightly, I can be vain. I often wish for understanding, for others to suddenly have an "aha" moment concerning me and what ever struggle I am going through. I have issues that concern and inspire me. Mothering is so very precious to me, a gift and role I treasure. I often wish to provide a different perspective or insight into all I am experiencing as a mother. But even that isnt the true definiton of sucess for me. An appreciation for the challenges and accomplishments of a special needs mother would be a wonderful byproduct of my writing but it isnt the goal. I think the goal for me is to reach a place of vulnerabilty and openness and to not back down for anything or anyone. To not deny any of myself or rearrange myself or question myself. It's my own battle, I struggle mostly against myself, although others can easily join forces against me.

I'm guessing the struggle to be authentic and true is valid to many people. It is hard to live fully exposed, to be willing to share openly, without hesistation. The hesistation is a safety measure to avoid being hurt, criticized, ostracized even. The hesitation can become a stumbling block or even a full blockade.  Comfort is always easier but it isnt always as rewarding. So I will attempt to be fully me, attempt to work through my vulnerability and see what follows.
Or maybe I should just write romance novels, that might be easier and funner.

high dive

2010-01-29T10:49:00.000-08:00

I havent blogged in a few days. Well, Ok I have blogged several times but not posted. In fact I have a few posts hiding out in my draft folder, hiding or hanging out, I am not really sure how to classify them actually. They were written over the last few days at different ranges of emotion. One written in anger, one written to justify; all written to make me feel better after receiving some criticism, insult, or slight. I didnt think they would be beneficial or professional so I didnt end up posting them. But I cant bring myself to delete them. Am I keeping them in my arsenal for future defense? Am I keeping them as a reminder to myself, as a silent victory of words and justification.

Don't we all have those moments when someone says something to hurt us and we go over in our heads all the things we would like to say in return, in defense, in justification, or in anger? I am noticing with myself that I am having a hard time getting back into the vulnerabilty of this blog. I am safeguarding myself because others voices and opinions can be so loud, so LOUD!

Ever get caught up in something someone else said or thought about you? It is great if it is a positive compliment. You can relish and enjoy it. But when it is critical, detrimental, unexpected hurt, wow it stings! And no matter what someone else's opinion is of you, you cannot get drawn in too much that you lose your own perspective. I almost did. I almost let others who had not walked out my life and my journey condemn and criticize me to the point that I questioned everything, even my mental health and my faith, my personal relationship with God, with my self, with my children.
And so today I feel hesitant, unsteady, like the first time I went off the high dive at the Sistersville Pool. Do I pick up again and share where I am at in the reality of my own life? The days that are hard and challenging and even sad adjusting to this new chapter in my life; do I write about them? Or do I keep them quiet and bottled up so others dont judge me or pity me or caterogize me? Do I pretend to be who I am not so others are comfy? Now I am all about comfy, I would live in tshrits and jeans if I could, but not everything can be sacrificed for comfort. I write and I share because it is truth. My life right now is hard and challenging and peppered with sadness and disappointment. My life isnt normal, one of my children is not typical,none are actually, they are all spectacular. But in the sense of the word typical, like other babies, no that is not my little man. And so I adjust, and I realize that others struggle with this adjustment time and have opinions about this adjustment. While I appreciate concern I do not appreciate criticism. I do not believe fully in "constructive criticism," I think perspective is vital. Vital! I also rebel against those who would wish to rescue or save me. I do not need rescued. I have a rescuer and he is Jesus. I need no one else to come and save me, change me, make me feel better.
Still struggling to go off that high dive. I think when I was a child, I climbed those ladder steps several times before I was brave enough to jump. I also remember I was not willing to jump unless the lifeguard and my father were standing ready to jump in and save me should something go wrong.
I am not sure I have a point today. I think I am just attempting to climb the ladder steps again.

thoughts from a dream

2010-01-25T08:17:00.000-08:00

I had a dream last night that I was pregnant with a baby girl, I was due any day. In fact in the dream I was arriving at a friend's house for a gathering and feeling panicky about going into labor. In the dream I also found two of my sister's lost/stolen cell phones and was overjoyed because it meant I could contact her to come when I had the baby. I awoke this morning feeling so melancholy, the pregnant expectation and anticipation of the dream was no longer with me. I felt a little of a letdown, a sadness I have a hard time describing.
I am not one to remember most dreams nor am I one to spend too much time interepting them. I love symbolism, one of my favorite aspects of literature classes as a high school and college student. But I dont have the self-analyzation tendency when it comes to my dreams. Mostly because when I awake I am usually running late and need to jump right out of bed.
I am not planning on spending too much time on this dream because I took pain meds last night. I also spoke with a friend about my upcoming surgery and about menopause yesterday. On Saturday I talked with a few friends about how I struggle internally when I see hugely pregnant women. Noticing them is a reminder of how I never experienced hugely pregnant with Caleb. My body didnt make it there. There is a sense of letting go of all the excitement and anticipation of his birth. I let that go at 28 weeks when they said he must come now. I quit dreaming of who he would look like and what it would be like to hold him and greet him. I began worrying if it he would live, would I live, how much of the doctor statistics would fit his life? Seeing the hugely adorably pregnant lady is also a reminder of how quickly my baby dreams were changed, shattered almost. I didn't count his fingers and toes, I watched his tiny chest breathe in and out with machines. I didnt spend the first few months watching him grow big and chubby; I spent it watching him move from one health crisis to another. I didnt spend the first year of his life in awe of his baby moments, I spent it worrying about what now and what next? But I digress a little, you have all heard this before; my feelings of disappointment and injustice for all Caleb and I have struggled through have been discussed and shared many times. I share because I think it was part of why I had the dream last night. These feelings were all on my mind.
Crave and I only wanted four children. Yes, we wanted four children! We were prepared to stop at four, even before I had any complications. After having Caleb I realized it would not be safe or fair for me to have another baby even if I wanted to in a few years. I personally love being a mother. I love the chaos of a few children. I could "handle" more children with delight. I do not like the mess or the money of a large household but I love the rest of it. I struggle with finding time and the proper emotion for each child right now but I believe it will ease as Caleb grows. Caleb's therapies and dr. appts keep me busy and often his needs occupy my time. I struggle to not be too tired or stressed to meet the needs of the girls, who can be demanding, they are redhead girls a lot like their mother. What I am alluding to is that I am completely at peace with having a family of six. I do not desire to have more children.
But the prospect of surgically removing that possiblity from my body creates all sorts of pain in my heart. Of course I worry about the medical aspect of the surgery and all that entails. I worry about healing and how I will care for my kids. How will they react when Mommy isn't able to meet there needs and once again Grandma has to step in? Not that Grandma isnt wonderful because she is but it is the feeling of uncertainty that upsets my girls. I worry about more scarring and I worry about setbacks for Caleb if we have to take time off from his therapies. But I despair about the removal of my womb. I am saddened that part of my life is coming to an end not naturally but with a scalpel, with cutting. Being a mother is a huge part of my identity, a part I treasure and wear with honor. What will it be like to cut out one part of me linked to that?
I worry about early menopause and the need for hormones or natural supplements. Am I really going to have to concern myself with these things in my mid-thirties? That feeling of anticipation and excitment I felt in the dream, I want that back. I feel like I have not experienced it in so long, that maybe I never will again. I have felt anticpation over things like Christmas morning or trips to see friends. But the longing and the expecting for things that will change your life positively, where is that, will I feel it again. Did it begin, this feeling of loss, the first time my womb was cut? Will this final cut change things?
All this from a dream, from a feeling upon waking up from a dream. Should I blame the pain meds or maybe just the fact that it is Monday morning and those are always rough? Maybe my sister should quit losing her cell phone so I can talk to her about all this!

comparison

2010-01-21T09:23:00.000-08:00

Little man has a home visit here in a little bit, I should probably be waking him. I decided to let him sleep as long as possible because he is always so very tired after and cranky. I can't deal with cranky today, I have too much to do! I am realizing I havent made any progress updates lately, nor have I shared his test results. I will today.

He is so my delight and and that makes the busyness of life with him easier. I have been overwhelmed with his therapies and appointments and managing all of that while trying to also keep up with the girls and Jason and finding time for myself. Christmas break was a wonderful resting time as far as all of our running. The snow added an extra week of rest. But we are back into a routine of therapies and appts. and nurse consults and I am accepting that this is my normal. I am attempting to move out of survival mode with my mothering. For the last two years Caleb's medical issues have dominated our family life. I have had to make hard choices about whose needs are more pressing. I feel hopeful and confident that we can move out of this thought process, this adrenaline type of parenting. I have been to the ER five times this winter with two of my children. Five freaking times and I hate hospitals! I have been resentful and over it, over the hard times, the stressful times. The chip on my shoulder has been growing and so I am attempting to deal with it.
I was at the pediatrician the other day with my oldest and youngest for well child check-ups. We sat in the waiting room with more than a few babies and toddlers, some older, some a little younger than Caleb. All were doing much more than Caleb, walking, playing, speaking, babbling. Caleb sat on his sister's lap and just stared at her. I was actually feeling spiteful and competitve, which is not me as a mother! I remember thinking "well your kid may be younger and walking and babbling, but my little boy is way cuter and much more easygoing. Way cuter." and then I cringed and said wow Chris, you need some freaking sleep and an attitude adjustment. Stop whining about what you don't have, stop looking at others' situations and deal with your own.

I know to some degree most mothers compare their children to other children,whether it be other children the same age as their child, or to a sibling. I think we compare when we are looking for accolades or praise; my child is smarter, more athletic, kinder, more beautiful, more unique. We compare to fill our pride, feed our ego. Or we compare when we are looking for advice or instruction. I am hoping to move past the comparison of situations and children because it is not helping me. It is only making me feel less normal, less peaceful, more envious and not centered. I have been wondering and asking what I could still have to learn. As if all of this is just some big life lesson or test of faith. It isnt, it is just life. Realizing that now or at least feeling that in this moment.
I was driving in the parking lot of the hospital the other day after check-ups and I wondered if parking lots will always give me anxiety? Are they forever linked to memories of crisis with Caleb? Is this my new normal and how do I embrace it? Do I need to embrace it or just get through it? I want to know how long, how much. How long will this running to and from doctor and therapy appointments last? How much more to worry about and walk through? Is it ok that I am fed up, frustrated, envious? Is it ok that my faith is being put aside, not thrown away, but casually set on a shelf. If I am honest with myself that is true even though I know it isnt right. There are days when my situation is more real than my faith, or my trust. Not every day but days on end when I wander where He is and why is He allowing more than I can handle. And No, I do not belive God doesnt ever give us more than we can handle. That isnt true. He doenst ever give us more than we can handle with and through him but we arent supposed to walk anything out alone. But that is how I have felt, alone, misunderstood, forgotten or overlooked.

I know I havent shared with everyone everything, there is a good reason. I was protecting myself and my family. We have been waiting since Dec. 4th for results of tests on Caleb. The results have slowly trickled in over the last month and a half. I was on edge, in fear, sick of waiting and wandering, feeling guilty and traitorish for every comparsion or admission of Caleb's development that I made. Knowing something is wrong but not what or why, it is hard. We have received all of these test results and they came back fine. I was so happy and relieved. And then the neuro called and once again we wait. Another test scheduled, more medical decisions to make. And news to share with people who arent always who I would want them to be for me. The doctor believes Caleb has some life long mental and developmental disabilities. The test will show more clearly the extent and the course of treatment. And so that hangs in the air. But I look at my little boy and I see the progress and the growth he has made. I can say he isnt like other babies his age or even months younger. He doesnt play or communicate like they do. He is doing so much more this month than two months ago though. He isnt like other babies, even my girls as babies. But I can say, this little boy fills my world with delight and joy like no one else on earth. He continues to amaze me with his tenacity and with his peace. He works harder than any other baby I know and he doesnt back down. So I wait and I try very hard to just be his mom and the girls mom and let the rest happen.

stuck

2010-01-18T10:57:00.000-08:00

feeling stuck today. in my writing mostly. i have this unexplainable need to write to sort out my feelings. It's like writing becomes my new best friend. Or the girlhood friend you call at the end of the school day, minutes after returning home, to discuss the events of the day. I did that and remember my parents wondering what I could possibly have to say when I just saw my friend mintues ago. I now watch my oldest daughter do this, reach for the phone mintues after walking in the door and giving me a hug and I get it. The need to discuss, reevaluate, gain a different perspective or just relive the moments of the day. I am simplifiying a little of course but my writing is like this. A need to see things on paper, a need to sort through feelings and events. A need for perspective, sometimes a need to record moments and feelings so as not to forget.
Right now CC is reading a book, Chinese Cinderella, a book I of course read quickly before giving it to her. I wanted to make sure the content was ok, wounldn't give her nightmares or teach her things she didnt need to know yet. I also read it because I love books and I love sharing the experience with each of my girls. So I have read it, I know the details of what happens and when. CC is driving me mad with questions. She wants to know before she reads, before she invests too much, how is it going to end? Is it going to be too sad that it haunts me after, is it going to keep me up with worry or fear? CC is like this with most books or movies she dives into. Part of it is the organizer and preparer in her, she likes to be ready for any situation that comes along. I think part of it is a need to know that the emotions wont be too much, too overwhelming. And it is wanting to know into the future, the what-ifs and if-nots. How much do you invest in what you cannot see, cannot change or can you change it? She is struggling with it in her reading, I am struggling with it in my life.

And so I am stuck, not wanting to pick up the pen and write, well the keyboard, crappy as it is; not wanting to "call the girlfriend and chat," because at times it all seems a little much. I miss the light, breezy kind of conversations. All of my conversations or thoughts seem to be heavy right now. Unknown fears or questions about Caleb, frustrations over past issues that affect the now, resentment because life isn't easy or what I expected or dreamed it to be. So I am stuck. not ready to put those thought out there yet. Wishing like CC that I could know before I invest if it is worth it, if it will matter as much later as it seems to now, wishing to know the future.
And then of course there is the wandering, does this make sense to anyone else? I know I am unusual, quirky, not everyone gets me. Do people read this and wander what the heck is this chic talking about. Do I think too much, shouldnt I just live and quit thinking, worrying, processing, picking things over? Does anyone even read this? It wouldnt matter if they didnt. I still love the process, the ability to express myself, share myself. At least if it is on paper or screen, it isnt rolling around in my head anymore!
Right now I am not ready to deal with the heavy thoughts or fears so I will try the record-keeping aspect of my writing. The "let me relive part" of girfriend sharing, it is fun, important, lasting. Maybe later I will be unstuck in the other areas or it will be easier to face them.

2010

2010-01-12T11:55:00.000-08:00

My New Year's goal was to blog more, to write more and not just venting and whining but writing and documenting and really diving in to my blog and begining to craft my writing better. And do you know everytime I have started to blog this past week since I made my new year's goal a declartion, my keboard has acted up. Everytime, midsentence, mid-paragraph, mid-thought, my keyboard has went on strike or acted out. I find this hilarious, humourous, ironic. And I say to my keyboard, "Bring it!"
Now before you start to trouble yourself with my sanity, I will admit that yes I know the keyboard is an inanimate object and not a real tormentor or foe. Nevertheless, I still say in all sincerity, "Bring it!" I am prepared to follow through on my writing, on my venting, on my documenting, on my "web-logging" of events, emotions, challenges, and lessons of life. So keyboard if you want to act up and short-circuit every time I have a moment or a grand idea or issue I need to type through, act up. I will replace you quickly with a new, shiny, fancy wireless keyboard and in the meantime I will pull out your old-fashioned but still usable replacement, my good old, dear diary. Some of you may know that I formerly documented life in this non-electronic diary until the day when my diary was taken captive and my words were held against me. Shocking I know but it happened and not by a little brother. My privacy was invaded and my trust was betrayed and for a while I did not write or I wrote and then destroyed. So keyboards act up and people can open a diary and read words not meant for them, a lesson I have learned. But I simply dont care. This year, at this time in my life, I have finally decided I am going to write no matter what; I have a voice, I have a life with details that need worked out, I have a story that can be shared, I have a faith that I will not walk out in quiet or in shame. So pen and paper, new keyboard, or jaded, gunk filled nememsis keyboard now in my position,get ready because life that is messy and hard and sometimes sad, sometimes funny, but always beautiful in it's realness, I will write.
I have received lovely comments from friends, family and strangers on my blog postings. I have received criticism and unwanted advice and even some interesting career encouragement and advice from others. I am thankful for the chance to share my life and my musings about my life with others. I am so thankful I can be real and be me and so 2010, I havent fully embraced you but I will document you. In fact 2010 you fill me with fear for what you may bring medically and emotionally to my life. You also make me realize the wall I have put up around my faith and my relationship with God. I will deal with that wall this year. I am not sure if I will scale it or demolish it, or maybe I will remove it block by block. I start 2010 with a keyboard that is jacked up, a van that needs expensive repairs, payment arrangements for medical bills, the need for a major surgery, and the waiting for test results for my sweet little boy. I start 2010 with snowstorms and delays of school and therapy and new hard treatment options for Caleb. Life feels like it is on hold but I was just reminded yesterday it doesnt stop for anyone. Life goes on everyday and all around me and so ok I will face and document it. I may be uneasy or nervous or grouchy but 2010, I am ready for you. so bring it.

a week in review

2010-01-03T21:04:00.000-08:00

My week in review:

Sunday: miss church spend day in bed with stomach virus, well partially in bed and partially caring for vomitting eldest daughter, sick husband, and baby with respitary infection.

Monday: Feeling better, spend day doing laundry and finishing last minute shopping for my family Christmas/NYE celebration (leaving Wed. morning)

Tuesday: go to doctor, find out I need a hysterectomy. Spend day in shock and disbelief and sadness. also try to pack for trip and not let on that anything is wrong to kids. fail miserably, overpack and spend day tearfilled and anxious

Wednesday: Spend morning at hubby's office with kids feeling intrusive and unprofessional. well until I realize someone else brought a puppy to office, so we arent the only inturders. head to Columbus and spend evening with siblings, parents, kids.  bake cake for Vanny, spend time with Cowboy Jason, Caleb learns to wave, spend day waving to Caleb attempting to get him to repeat waving. Cry happy tears and have so much fun. Play pictionary with kids, hilarious.

Thursday: more time with family, husband joins the party,  celebrate NYE, start new medications that suck. conceal meds from worry-prone kids,attempt to keep kids entertained upstairs so grownups can hang out downstairs, fail miserably, spend most of NYE avoiding football and chatting with Mar, go to bed promptly at 12:02 am.

Friday: play WVu-opoly, lose, watch WVu bowl game- we lose, take brother to airport, comfort children, watch Rose Bowl, find myself surprisingly rooting for the Bucks, Bucks win and then I feel icky and pissy. Find myself upset and ready to take on anyone who wants to trashtalk my Mountaineers, Most of family heads home. Vanny and I stay one more night at my sister's. Watch graphic violent movies,(not with Vanny) go to bed late.

Sat:   sleep in and enjoy the sounds of Vanny and my neice playing so well together, ready to go home, spend morning watching useless, wasteful reality tv and not able to turn channel from the Jersey Shores, watch with Mar instead of doing anything useful, like preparing to drive home, head home early afternoon, receive a half a cow from my farmer father and the information that my husband has hid a cow's tongue wrapped up somewhere in my freezer, vow to serve it to him when I find it, spend evening playing Trivial Pursuit and drinking Pina Coladas with girlfriends. Find out I rock in literature catergory but not entertainment. This angers me. We lose. whatever. Find out a boy called my oldest daughter to "talk" , still in disbelief over this newest development. She didnt want to talk, so tickled about this one.

Sunday: wake up feeling like I have been stabbed in the stomach, in a half-awake state think it must be a dream, attempt to get out of bed and feel the searing pain, cry for painpills, take pills, prepare for church, teach Sunday school lesson, actually turns out fun for all of us, care for a fussy baby, spend rest of day in bed watching movies and feeling pain and disbelief, begin to explain to oldest daughter why I need medicine all of the sudden, change subject because she is my most worrisome child and I dont want her to worry, spend time talking about boys, dating, character, oh I am so not ready for all of this. When did my sweet, little curly haired toddler turn into a beautiful adolescent girl with boys calling? Spend day in disbelief and anger that this pain is happening to me.   The pain feels almost as bad as when I first awoke from surgery. schedule some therapy sessions (emotional therapy for me) because I realize I will need them about the same time I realize that this is reality. damn. watch Julia movie, love it, husband takes care of kids, goes to store, cooks lunch and dinner, and does laundry. I feel blessed but guilty that he has to take on so much. aggravated once again that I feel helpless.
Spend time blogging with a keyboard that is acting crazy tonight. feel jittery, cant sleep. Hope this next week is better than last week.

also eat an insane amount of reece cups, they do help you know.

scars

2009-12-29T13:08:00.000-08:00

I do not even know where to begin or what to think right now. Without providing too much information, I have been having some health issues related to my c-section. I cannot believe sixteen months after my surgery, I am still having issues. I thought it was just a quick six week recovery. It did not feel like a quick recovery at the time. The six weeks were incredibly painful and limited my ability to do many things. drive, lift, be intimate, even hold and hug the kids sometimes. My incision was messier, more painful than most because of the emergent way it occured. I was black and blue, bruised for months. My stomach was an ugly sight that almost looked alien. Black, blue, purple with staples in the middle. Eww! Not to mention all of the emotional trauma that came along with this emergency surgery, the loss of control, of bonding, of dignity. The inability to nurse or cuddle or even see or greet my child was devestating in itself.
I hate my scar, I dont wear it with pride. I cringe when I see it because of the memories it makes me recall. The chaos and the fear of that day, the panicked rush to save us, my baby and I, was of most importance obviously. But in the rush common courtesy and decency was denied. My clothes were ripped and cut off of me quickly without regard for my comfort or modesty. It was in fact frightening to me, I was not prepared to have my clothes torn quickly, my nakedness exposed to a room full of people. My arms were tied to the table, quickly without warning or preparation, my legs as well. I wanted to ask them to slow down, wait a minute, calm order, not chaotic mess. The room was so loud and bright, I felt exposed, cold, scared. The room was also full of young doctors, medical students, interns, residents: all in a panic, without composure. How could I feel any semblance of peace or trust in what was about to happen to me. I was placing my life and my baby's life in the hands of nervous,panicked amateurs. I do remember one voice of calm in the craziness of those moments. That voice screamed, "Shut up!" He was my anestheisiologist and as he began to make his incision, I cried out because I could feel the cutting. He realized my anesthesia had not set in and decided to put me completely under. He acknowledged me, he looked into my eyes, he informed me of what he was going to do next. His was the last voice I heard before I drifted off in a medicine-induced sleep. I had been repeating the phrase, "Please Jesus' over and over and he let me know he would be praying as he worked for me. It was the sweetest moment of my birth. Not the moment when I met my son because that didnt occur until the next day. Not the moment when Jason and I shared in the joy of becoming parents once again, that also did not happen until the next morning. A kind doctor, a voice in the calm, is the most poignant memory of my labor because all the other moments were lost due to an emergency c-section and a very sick baby.

I didnt look at my scar for four days. It was all taped up anyway, I could not have seen it. But I did not purposefully look down until four days after my surgery while standing in the shower for the first time. I was weak from blood loss and major surgery. I could barely stand. The shower was tiny. Jason could not fit inside with me to help me stand. He stood guard, in the place of the curtain, in case I fell. I showered with my front away from him. The first modesty I have ever felt in front of him probably. I was ashamed and disgusted by my body, by it's "failure." I remember looking down and seeing my abdomen purple, it stood out because I am so very pale. I remember as I dressed in a fresh hospital gown, I braved a look in the mirror at my scar. I made Jason turn away. I could not tell much because of the bandages, but what I saw made me nauseous. My nice pretty belly was now all jagged and stapled. It looked like something out of a horror movie.

I have since been informed that my bruising was due to the extreme force and hurry of Caleb's removal from my body. They needed to push down and rearrange things in order to get him out. My surgeon performed her first emergency c-section on me. Lucky me. It is no straight line, no thin line, no small incision. It goes from my groin to my belly button. I no longer care about 'innies' or 'outies.' I have a scar that stands out much more than that. It has not faded over time, like other scars. My scar has turned a shade of purple, glaringly obvious against my paleness.
My husband is gracious and calls it a badge of courage and honor. He is thankful the scar exists because the surgery saved the lives of his wife and son. I can echo the thankfullness, nothing is more precious than life. But I struggle with more than vanity. I struggle with memories, a vivid reminder of a traumatic time in my life. I also struggle with scar tissue and pain. I have learned over the last two weeks that my surgery has damaged my uterus severely. My c-section surgery has created the need for another surgery, a hysterectomy. It is something I am still processing. Two surgeries I never thought I would need.
The hysterectomy will alleviate my pain and make life bearable and easier. I cannot do hormone treatments because of the risks associated with clotting disorders. I cannot live a life on painkillers, I refuse to live fuzzy or in pain. But the surgery seems so final and a lasting insult. I no longer wish to bear children, I no longer wish to birth more children. I am only 32 though, a hysterectomy seems so strange at 32. I am also not sure I can willingly go under the knife. My last surgery was so traumatic and stressful. I have yet to schedule the surgery. I cannot imagine my kids' reaction or how I will manage with recovery. I am not ready for it to be a reality. My poor body.

I am hesistant about posting this one. I am trying to live my life in the open. To conceal a huge part of my struggle and my life feels dishonest or misleading. I feel exposed in sharing but at least I have control over the exposure. I am still crying out, "Please Jesus." I am not sharing for sympathy or discussion on the evils of c-sections. I think I am writing for awareness, self awareness and to provide insight to others about the reality of birth trauma.
I havent scheduled my surgery yet in part because of fear or a refusal to accept reality. I also havent scheduled because I decided to take some time to pray, to specifically ask God to help me.

Happy Birthday to my Panda

2009-12-27T16:47:00.000-08:00

Tomorrow is my baby girl's birthday. She isn't a baby anymore, she will be 5. Yes, five. My heart sighs as I say that. I cannot believe my sweet, funny little Vanny Voo will be old enough for kindergarten, old enough to count her age with her whole hand, five digits = five years. Sigh.

She was teeny-tiny at birth with a head of dark hair. Well, what I thought was teeny-tiny until her brother redefined that for us. I struggled with her pregnancy as well, knowing something was wrong but not able to define or diagnose it. My womb stopped growing at 30 weeks, I had IUGR (inter-uterine growth restriction) A fancy name for a scary time in my life. Each week my ob would measure my belly and look at me with concern and say," I just don't know how much longer you will be able to hold on." I came in weekly for appointments and testing but we just could not figure out what was wrong. My sweet little baby came at 34 weeks, she was tiny to me at 4lbs and 13 oz. But she was beautiful with so much dark hair and the most delicate features. She came shooting into the room after a difficult and painful natural labor. The doctor barely caught her. Seriously!
I started laboring on Dec. 26, the day of the major tsunami. I remember watching horrified and saddened and wondering at the state of the world my baby girl would be entering. My labor grew more and more difficult, which is often the case with an induction. It seemed everyone in my life who could be of support was sick with the flu, including my husband. At one point, I remember calling and putting my friend Amy on standby because I needed support and everyone else was sick, sick, sick. I had the meanest labor nurse and so I returned the favor and became a mean patient to her as well. Not one of my proudest moments but something worth mentioning. Crave pulled it together and was able to witness the birth of our last little girl. The ob showed me my placenta and we realized why she was so small. It was a sight part of me wishes I never saw even though it provided answers. My placenta was full of clots and not healthy at all, no wonder she was so small, she could barely get nutrients.

My sweet baby girl, though tiny at the time, was made of sturdy stock and a strong will. She may be the youngest of my three girls but she rules the roost most of the time. She quickly stepped out of her small stature, she became a force to reckon with. She is my child most like her daddy; Ready to take on adventure, no fear, nothing to hold her down. She was the first child that caused in me the need to babyproof. She was a climber and an explorer. Her sense of humor is much like her daddy's as well and I love this. She keeps me entertained with her silly antics and her funny musings about life. My constant desire to teach ladylike habits and manners to my girls is challenged by Savannah but I enjoy even this battle. She shows me each and every day she is her own person.
She has a best friend, my sweet little neice Mya, my sister's little girl. They are only six weeks apart. Mar and I were pregnant together and it was a very sweet time in my life. We shared our misery, our maternity clothes, and the joys of pregnancy, also the concerns of our stressful pregnancies. Now we share this journey of mothering these two girls and it is so nice to have someone so close experiencing the same milestones and challenges. My best friend gave birth to my daughter's best friend.

I can hardly believe my Panda will be five tomorrow. She is still in to princessess and dress up and make believe. I know, having raised her sisters for a few more years, that these early years pass so quickly. I will it to last a little longer with my youngest daughter. I am not ready for her to enter the real world of homework, and mean girls and admonishments to act your age, or the introduciton of societal things that are above her age. The world comes so fast and I am eager to hold onto the beautiful innoncence of the first years for just a little longer.
My Vanny Voo, My Panda, is the neatest kid. She is very shy in public. In fact, she didnt speak a word to her preschool teacher until two weeks into the school year. At home, she is boisterous and loud, and quirky and funny. She has obsessions, unusual but adorable obsessions. She loves Mario and Nintendo. She loves Wonder Woman. She loves Panda bears. We watched a documentary on an earthquake that had destroyed pandas' habitat and from that day, six months ago, she has been raising money to save the Pandas. Her favorite foods are cooked carrots and broccoli. She will choose broccoli over cookies any day. She idolizes my little brother, her Nintendo friend, who played hours upon hours of Wii with her, including Disney Princess. She calls him her favorite boy buddy. He is flying in to see her, (and the rest of the family) on Tuesday. We will celebrate her birthday with him. She adores my dad, always wanting to call him and inform him of our dinner menu. And if we have green beans she insists we save some for Pap.

She came into the world so tiny but she has made such a huge impact on me and on all of our family. I wait for the day when she warms up to the world, when she steps out of her shyness. World, then you will be truly blessed and amazed by this sweet, funny, full of life little girl.

BFF

Uncle Jason

Turtle speed

2009-12-23T18:01:00.000-08:00

I have a quiet house, an almost empty house. My little man is asleep in his crib, the rest of the family is over the river and through the woods to grandma's house. I have finished my baking, my shopping and wrapping and almost all of my cleaning. I am not sure how I pulled it all together and managed to have a quiet house and a clean house and a to do list all checked off but I am very content.
We have had a stressful beginning of the week and the whole month has been one frustration or worry after another. More than just holiday busyness and bills, it seems many things have come to wreak havoc on my peace and my joy. I have to be honest and say I havent felt much peace or joy this holiday month, this my favorite time of year. My heart has been anxious and heavy, my mind full of so many things and such a longing for respite, for peace, for a break in the thunder clouds that seem to be looming overhead, following my days.

It is nice to sit quietly this eveing with a cup of tea and a freshly baked cookie. I can shut out the quest for answers for a few days because the doctors are not even in their offices. I can not worry about the van for a few days because the mechanic can't get to it until next week.
I love that the last few years we have decided to spend Christmas at our home, we are not traveling on Christmas. We can slow the pace down, if just for a few days. I need turtle speed right now. I need to just be with my kids, watch their excitement for Santa and for Jesus build and spill over on us. I need to just watch my baby boy excitedly play with his sisters and crawl all over them. How incredibly simple and beautiful it is to see them happy and playing together. They have been bickering so much, so often and I am frustrated about it. But add Caleb to the mix and the atmosphere is diffused. You cant help but smile when he is smiling so happily.

Such a hard year for us, again. But we are at the end of the year and I am so thankful that we have made the pace deliberately slow. I needed this refreshing. I needed this time of staying in. I needed this time to just be.
Come Monday we will be back to therapies and returning doctors calls and fixing the van and running everywhere but this weekend is a reprieve. Oh I still have concerns and frustrations. My first thought when I awoke today was, Will the doctor have answers today? The answer was no, nope, nada.
I am looking forward to our Christmas eve service tomorrow, it is always beautiful and joyful for me and the kids. I am looking forward to hearing Jason read the Christmas story to the kids tomorrow before bed, one of my favorite family traditions. Jason always does so well with bedtime, so much more patient than me, and more of a storyteller. The kids love his bedtimes and are always bummed out when he is out of town. He started reading the nativity story to the kids when CC was just a baby, when it was just the three of us, now we have doubled our family size. Pretty cool. There is something beautiful about watching him read to our children about Jesus, about our Father, about God's plan and God's gift. I am so happy that I finally feel some anticipation for Christmas, it was so hard this year to get in the mood. I will gladly do Christmas this year at turtle speed and hope that the kids' delight and joy will rub off on to me.
Merry Christmas!

Dear Crave

2009-12-19T23:49:00.000-08:00

Dear Crave,

Since I know you only skim my blog for glimpses of your name in print before you invest fully in reading the material, I thought I would specifically address you tonight. And rightfully so because tonight my thougths are on you. We will be celebrating our annivesary in the morning, can you believe that it has been twelve years since we said, "I do." Sixteen years since our first date, even longer since I first started crushing on you.
I know it has been a rough year for us, stressfull, tiresome, full of concerns for the kids and not enough time for each other. Recently I realized that we have not been dreaming as much as we you used to do. I remember all of our late night talks after curfew in my parents' living room. Remember our in depth conversations on the phone and in the car during college? We were so full of dreams, of expectations for our future. A few weeks ago you mentioned that you wished we were the couple who just up and traveled like we used to. It made me smile and think back on all of our road trips and our nature trips. We arent as portable or as free to travel now days, are we? I know I have been worried over the future and so I have put a hold on dreaming, on expecting. But I am so glad you are walking this out with me, that you are here by my side. I love being the mother of your children. I love co-parenting with you. It is by far the biggest adventure we have been on.
I have figured it out, math genius that I am, we have averaged a child every 3 years of our marriage. Isnt that incredible? I remember when we were dating and discussing having children. You wondered if you would be a good father. I knew you would be. I valued your loyalty and your adventurous spirit. I saw in you a man who would devote his life to his family and to fun. I see you with the girls and Caleb and know I was right. You are so giving and devoted to us and each of our kids has a sillyness factor that is all you.

I remember when you were an engineering student struggling with professors and exams. Working and going to school full time. I did not realize I would personally learn so much about engineering through osmosis but I have over the years. I remember traveling with you to decide which city in which to start your engineering career. Those first years of marriage when it felt like you, me and your engineering friends all co-existed together. I tried out so many recipes on you and your friends. I do not say it often enough but I am proud of you, of your work ethic. I know I tease you about engineering and coal and the endless conversations about permits and water resources but I see how hard you work for us. I also find some of it interesting and fascinating. I remember when we lived in Columbus how quickly I learned shortcuts, only because I was married to an engineer. I still laugh about how I can point out what work projects you did in Columbus ten years ago. My point is that I am so thankful to be involved in watching you evolve and grow as an engineer.

I wish right now we could run away for a weekend or even longer. I know it isnt feasible or practical but it does sound appealing. Thank you so much for understanding where I am as a mother and not putting extra expectations on me. I did not know when we married that life would be this rich, this full of beauty and joy. I love that we still laugh with each other. I love so much about you Crave. I know I have devoted so much time and energy to the kids this year. I know that my heart has been heavy and you have had to carry extra and you have done so without complaining or resenting. I am so thankful for where we are as a couple right now. It has been the hardest year, and a year spent mostly dealing with issues of our children. But I also feel closer to you, more in love and in need of you than I ever have. I am so thankful we are walking this out togther. I still have many dreams and hopes for us. But I am thankful we are living out the biggest dream, to be one, to raise a family, to live life together. The variables do not matter as much. I remember traveling on those interview weekends with you so long ago. We had such an anticipation for what life would bring us, where life would bring us, how we would get there. I have lived enough life with you that I now know that none of it is as important as just being with you. Anywhere.

I would love another nature trip. I have walked off a cliff, went underground, what else could we do? I would love more late night conversations about faith, values, dreams. I would love more long drives with the radio off and you singing to me. Do you remember the year without a radio? Maybe we should take your car out for those, it is hard to feel romantic and carefree in minivan full of carseats and happy meal toys. Do you know what I also love? You coming home to me every evening. I love that this is where we are now as a couple, we are a couple rasing our beautiful kids, walking out our faith, living out our biggest dream. I love you.

postcard

2009-12-18T09:25:00.000-08:00

Today I recieved Christmas cards in the mail along with a nice little postcard from Children's. I thought what could it be, it isnt large enough to be a bill, we do not have any appointments soon so it isnt a reminder card, maybe it is a holiday card. They send birthday cards to each of my kids and requests for donations, so why not a holiday card? I opened the card casually. It was not a holiday card, not a bill, not an appointment reminder. It was a postcard with lab results. A postcard with lab results. Odd. Disconcernting to me. Caleb's future resting on these lab results and they send me a postcard. a postcard. Can you tell I am annonyed? The postcard said one test came back ok. This is the test we knew would come back ok. The card also said please call for a follow up appointment to discuss your other lab results. Wait, what. Are our other lab results not ok? Are they even in? Immediately my mind goes to the bad, they must be in, they must be not ok or why else would we need a follow-up. I have called and left a message for the nurse to return my call and answer my questions. Stupid postcard. I will not freak out because there is no sense in it. They said the other testing would not be in until mid January. So ok breathe.
On a side note, we are expected to get some snow. I am excited. My plans to Christmas shop and to make the girls really clean their room will be put on hold but snow, yeah! And also, I love Christmas cards. I love pictures of friends' kids and pets. I love beautiful religious cards and Santa cards. I am so thankful I received Christmas cards today along with the postcard. The postcard can be burried undereneath pictures of smiling kids and snowmen.
stupid postcard, who sends a postcard anyway?

no answers yet

2009-12-17T09:35:00.000-08:00

We received no answers today and I am so mad about it. Mad when really I should be relieved that there is no structural abnormality. I want an easy answer and an easy fix. Instead we got more blabber, my new word. To me it means, more guesses, more blame it on preemie and walk it out in therapy kind of talk. I am up to my ears in therapy and intentionality. So I am discouraged and frustrated and rearranging my schedule to make room for more therapy sessions and homework. I am relieved that it isnt structural, I didnt want Caleb to require surgery or go on more medicines. We just didnt learn anything today that we didnt already know. Now we have the go ahead, the encouragement, the proof to increase his speech therapy sessions.

I knew one test would not make Caleb magically be able to swallow food without vomitting or choking but I secretly wished upon a star for it, fingers crossed, on my knees praying and wishing. Because every meal, every feeding is stressful, time consuming. Who has time for family time dinner conversation when you are talking your toddler through his gagging and vomitting? It has taken some of the joy out of gathering together as a family.

I know I have been whiny and complaining so much on here lately. I dislike that very much about my life right now. I dont want to be the friend that everyone feels sorry for or tiptoes around. I want to care about more than Caleb's health issues. But the weight of them and the truth of them are pressing down on me right now.
It is 8 days before Christmas, my annivesary is 3 days from now. I do not know how to transition to jolly, happy mom or sexy, excited wife. I have 3 holiday parties this weekend. I need to shop and cook for each of them and I could care less. I lack motivation because I am discouraged and angry and frustrated. I wanted answers today. I did not want to add more therapy to my schedule. We have therapy in an hour already.
Maybe I want God to feel sorry for me, to see me struggling and angry and grant my wish.
What I really want is for Caleb to be able to eat normally. I want the 'gather around the dinner table with laughter and fun' and not what we have now. I feel as though I am a pretty calm, laid back, flexible kind of person. I go with the flow, I change, I adjust. I am not patient but I am flexible, moldable. Do I really needed molded this much? And wow, how shallow am I that I put all this on me as though it is only about me. It isnt.
We are blessed with a therapy team that encourages and listens and empathizes. Caleb's therapists adore him and gush over him and he returns the favor. But they also see me, understand how hard this is on our whole family. They have been kind and considerate and affirming. They always give exercises to get the girls involved in Caleb's care. It makes the girls feel included, involved. His therapists have invested in Caleb's progress and they never undervalue my role. And so I hate that I am venting and feeling frustrated over more therapy. For me it is more of a struggle in realizing how in depth is the influence of his prematurity. We struggled with feeding issues over 15 months ago in the NICU and now, and still, strugging.
Holiday cheer is hard for me to muster. But I can offer gratitude for the gifts, even amidst struggle, that I have received. I am so thankful that my son is home with us, I am so thankful for my beautiful daugthers. I am more in love with my husband than ever before. I have amazing friends and family. I have a network of people who love and work with my son. The holidays are not as easy and carefree for me this year but I do still celebrate Jesus. I desperately want answers to many things concerning Caleb. I also want rest, peace.

names

2009-12-14T07:27:00.000-08:00

I have been struggling recently with worry, with the weight of a an unknown future, with fear of my own capabilities as a mother, with frustration and anger over others' offerings and reactions to me. I also have this large sense of irony and of disbelief; how 16 months after Caleb's birth could we still have this much strife, this much unknown about his future and his present. How can we still be on a rollercoaster? And the biggest statement in my heart is that it isnt fair!!!
It really does feel like a perpetual rollercoaster and I am not a fan of rollercoasters. I don't like the out of control feeling or the waves of nausea that can overtake me on a rollercoaster. I have those emotions right now.
In the last month it has been one thing after another with Caleb: hospitalizations, new diagnosis and treatment options, new tests run and new grim predictions. I have been intentionally vague and guarded about his recent doctor appointments. I am guarding my heart from others' viewpoints. I am trying to prevent discussion that may get back to my little girls' ears and cause uneeded stress and concern. And there is also a frustration that we still dont know much, that we are still waiting for answers, waiting for things to happen or not happen. I feel as though I have been waiting for a long time and I am pissy about it. I struggle with fear of his future on some days. If the neurologist is correct our life, our future will change in ways I never expected or wanted. So my heart is weary. Physically our therapy schedule is tiresome and draining. I am a stay at home mom who never seems to be home anymore. Just last week I was begging for a snowday so I could just be home with all four kids for fun. I am sure the snow will come soon, but to me not soon enough!
I am not sure where my faith is in all of this. I know it is here but I havent faced it yet if that makes any sense. I have just been in shock, in fear, in anger, in hurt. I have been wanting a day to just go in my room and cry and feel sorry for myself but havent had the time or the privacy for that. How sad is that! But I have felt that way, God just give me some time to cry and vent and grieve and be mad, then I will handle this head on with strength and hope. I know God can move me past the worry stage and the what if stage but I feel like I have planted my feet there for now.

I have been reminded of Caleb's name and of how Jason and I both really felt his name was given to us, directed to us by God. I had been set on naming our son Pierce since before we even married. Jason was set on Chadwick, a family name for generations, for our son's middle name. Pierce Chadwick was the name we had discussed and appointed for a son of ours before we even walked down the aisle to wed. Years later, we conceive that anticipated son. Do you know we almost named him Bronco. Jason wanted that name and I was just so happy to be pregnant with a son, we could have named him anything. But then the pregnancy became scary and high risk and we both grapled with the uncertainty. I had been reading Joshua, in the Bible. We both felt the desire to recognize God's hand in our life. We chose Caleb and then Rafe, Caleb Rafe, our courageous son who would be healed by God. I held on to the meaning of his name, the promise of his name all those long months in the NICU. Caleb of the Bible did not let fear or other's beliefs rein in his life, he chose to believe in the power of God. And so in my heart in the last few weeks I have struggled with the irony of our situation now, the irony of my belief in Caleb's name. Can I believe that God is more powerful than a lifelong medical handicap? It is easy to say yes when that situation isnt about your son, your sweet child. I can say that my faith falters, waivers. I struggle in knowing if I am capable to walk out that diagnosis. Yesterday at church I began the process of letting go. Of crying out to God, just crying out. I want my son healed, fully restored. I am tired of therapies, I am tired of doctors, I am tired of everything being so different and intentional and hard. I am tired of worrying about the girls emotional struggle in all of this. Tired of having to extend grace to others when I want grace given to me. Tired of running here to there, tired of trying to decide who needs me more. I want all of Caleb to be whole, and I want it now. Do I believe God can do this? Absolutely, I have seen him work many miracles. Will he do this? I dont know. I dont know. I dont know. For me there is a relief in writing that sentence. There is a relief in just admitting where I am at and allowing God to work out the rest. I want desperatley to be able to look at Caleb and take him as he is now, to enjoy him as he is now. I dont want to look at him and look for indicators of what is wrong, what might be wrong. So that is my focus for this week, to just enjoy Caleb. Can you imagine if we had named him Bronco? Ha!

today

2009-12-08T08:29:00.000-08:00

Today I am tired and have a horrible headache. I am considering cancelling Caleb's therapy appointment but no, I won't actually do that. Today we are going to specifically work on feeding issues so I feel like we need to be there. He also had such a bad, nonproductive therapy yesterday that I feel like he needs this one today. He has been agiated over the weekend and into yesterday. Fearful of the dark now, not wanting to be held but not wanting us to leave his sight. His little arms and hands are bruised from all the blood draws and he is very sensitive over them. All the progress we made in the last two weeks is gone. He loves, adores, is ga ga over his PT. Yesterday he crawled from her to me and back and just laid his head in our laps. As soon as one of us tried to pick him up to comfort him, he stiffened and arched away from us. He didnt go ga ga yesterday, he seemed exhausted. His sleep patterns are starting to change, as in waking many times at night and so he probably is exhausted. His room is next to ours, I hear him in there. He doesnt cry, he just moves around in his crib. He didnt want to play yesterday so maybe Friday and the weekend were overwhelming for him as well.
Today he is gleeful again, animated and happy to see Vanny and Sweetie the cat, his favorite toy.
Yesterday was a particulary hard day for me, exhaustion, stress, emotion, worry, all caught up with me. Someone said something to make me feel better that in actuality made me feel so much worse. I must be raw emotionally right now. The girls were bickering and I am so sick of the bickering. Senny Sunshine is in an arm sling from a chipped elbow. Geez, as if we needed one more thing. All I wanted was to hear Ja's voice, I wanted to check in with him but he was unavailabe until he walked in the door after six last night. I struggled on my own yesterday. I cried uncontrollably while I cooked dinner. I am sure I worried the girls. They came in with hugs and promises to do anything if I would stop crying. That made me want to cry more, I dont want them to have to carry any extra burden or worry. Ja came home, we had a yummy dinner. Then, he and I sat on the couch by the tree and he just held me. It's what I needed, it calmed me, he calmed me. He said nothing, made no assurances, he just held me. And I realized and appreciated once again the value of touch in a relationship.
Today I am feeling the need to focus on something bigger than I, bigger than our situation. I could easily distract myself with things to do, or research, or with movies and books and tv. Part of me is drawn to the distraction, drawn to the ease of investing in the drama of a movie or book rather than dealing with my own drama in any way. I remember the comfort I felt last night being in Ja's arms, in connecting with him, in not feeling alone. My marriage is bigger than I am alone but it isnt bigger than our situation. The only thing to me bigger than our sitation is my relationship with God, my dependence on Jesus. I am not going to describe it, I dont want to feel like I am sermonizing. I just know that at this stage, in the waiting and questioning period of our medical drama, I need to trust something more than the science of medicine. We do not have any answers, only more questions and routes to go. I could drive myself crazy with this, and have some. Today I have decided to just trust that God is working in whatever is my greatest need, he has so far. And to calm myself with scripture and reflcetion.

In this blog post today I realize I have talked much about time, "yesterday, today, now, in the future." All of these have consumed my time and my concern. Is what happened in the past going to affect our future like it affects our now? Is the behavior and conditions he had in the past and the ones he is displaying now, clues to a future diagnosis and prognosis? How can I decipher those clues. These thoughts have consumed me, ate at me. And I need to stop them. So I am working on that right now. Right now I have a naked girl playing Barbies, a baby chasing a cat, a sparkly, twinkling Christmas tree, and a glass a coke to take the edge of this headache... and the hope and comfort found in God's promises and his stories.

I am

2009-12-05T22:04:00.000-08:00

Trying to be authentic without being hurtful, my heart is heavy tonight. My mind is racing but not with worry, not with lists of things to do or buy, not with praises. My mind is racing with things I would like to say, of responses I would like to give, of how I would like to defend and protect myself and my mothering view. My mind is racing with things people shouldnt say, reasons why they say them, how I would LOVE to respond. Thankfully, the lessons my mom and dad tried to teach me all those teenage years ago, those lessons have stuck. I will not "talk back," I will not respond in anger or sass. And let me assure you this girl, this woman I guess, she still has a lot of sass. What I have now I lacked in high school is class, self-control maybe? NO actually it is just grace, grace to give because much has been given to me.

Leading up to Friday was stressful for me, we had put such emphasis on this neurology appointment for our sweet little guy. We have been waiting for so long for answers and my anxiety was high going into Friday. Our answers did not come, only more questions and more instructions to wait. We even have a new path to walk out is some ways. My anxiety is so-so. I cant say it is gone, erased but it has eased in some ways. That one appointment was not the one and only appointment that would forecast our son's future and prognosis. Friday was just the first of a few appointments we will have with neuro. Intersting turn of events for me, I was hoping to cross that specialist off our list of places for a former micro-preemie to visit. I wish we knew more, I wish we were not chasing down more possible diagnosis. I wish we had not had to schedule more tests. I wish some of those tests were not already in the process.

Caleb had blood drawn on Friday, it was traumatic for both of us. As I held him down and they dug around in his tiny little hands and arms, I saw all the progress we had made in the last two weeks of intentional massage and trust building just disappear. I couldnt stop his tears or mine. I know the blood draw was only moments of his life and it was necessary. I also know that my little boy struggles very much with sensory issues and feels very defensive about having his arms and particulary his hands held. His trust was broken and I helped in doing that. I know if you do not have a child with sensory issues you may not understand this and think I am being overly dramatic but let me assure you I am not. Caleb's sensory and defensive issues are huge to us, they inhibit his play and his abilty to self-feed or explore with his hands. I was more concerned for that on Friday than on what the blood work might reveal. I was also more concerned over the timing of the scheduling of the sedating for the MRI than of the actual results of the MRI. I didnt want the sedation to cause more trach issues or more oral motor issues for a boy who already has such issues with oral-motor. The results of the MRI were secondary to the immediate need to protect him, his airway, his fear of anything near his mouth or throat.

My sweet little boy, I love him so. Our neurology doctor was very kind but we did have to go over his birth story, my pregnancy complications, our hosptilizations. It is hard to believe it can all be condensed on one side of a medical form. It is so stretched out in my mind, so complicated. The doctor also wanted to know what I felt was "WRONG" with my child. No mother should have to answer that question. How do you catalog your response, how do you justify it when part of you feels it is a betrayal to admit anything is abnormal or not quite "Right" with your child. Our doctor was patient and gentle in his questions and responses. He did not rush me and he brought me alongside his thoughts and medical directions. I am more accustomed to a list of doctor's orders and a time table to fullfill them without much time and patience for discussion and questioning. Neonate clinic is abrupt, rushed, clinical. Neurology was patient, compassionate, and informed. I am so thankful for that treatment.
Over the weekend I have felt the need to protect myself, defend myself. I even wanted to go so far as to write a list of responses I thought would be appropriate to say to me. I often have them running in my head during conversations or shorlty after, what I would like to say, what I really want to say, what I meant to say, what I shouldnt have said. Also, what others should have said to me, what they should not have said, why they dont understand what they said was wrong, etc..

I have been mulling over this blog, wondering if I share too much or not enough. I will admit that I am sensitive, I have always been. I used to hate that about myself, condemn myself for my sensitivity. I have come to appreciate it and view it differently. Sensitivity can be beautiful if not abused, just like any superpower. I can be sensitive and not be easily offended or too self-aware that I become prideful. I can be compassionate to others because I feel things on a deep level. I believe more people should be authentic and vulnerable. I strive to be authentic, real, true to my feelings.

And so I am going to be honest, risk being criticized or misunderstood and say this, my true feelings are hurt. Hurt,not by any one person or comment, not hurt by the overal situation. Hurt by generalizations and common practices. I have a wise friend who says people feel a great need to rescue others. We want to make others feel better, sometimes because we genuinely care, sometimes because sadness or pain make us uncomfortable. Often times we rush into statements without thinking, I have done it, may even be doing it now. But I am hurt, by people, by statements that tend to deny the reality of my current situation, statements that refuse to allow me to feel what I feel in the moment.
I cannot deny that our situation currently is a child who was referred by several doctors, not just one, to a neurologist. I cannot deny that our son lags behind developmentally in every aspect. I cannot deny that our son does not speak, does not eat like a baby half his age. Half his age. Not 3 months adjusted, but half his age. I cannot deny that every test he has done developmentally, he has had significant delays across the board. I cannot say he is just doing just fine when he is not. Please do not expect this from me anymore. Please do not chide me or dismiss me when I say yes I do think something is wrong with my son. It is a most uncomfortable statement for me to make as his Mommy. I feel my own mommy guilt from saying it, my own traitorish spirit, I do not need your guilt heeped on to my own. Please do not question my faith or my prayer life or my belief that God is bigger than anything else I know. I know the truth of Jesus in my life. I do not need reprimands for my lack of praise. I know more than anyone how far we have come. I felt my son stop moving in my womb, I knew the day he would need to come out. I watched him have machines breathe for him, I know how far he has come, I know what God has done. But I cannot deny the reality of our current situation. I cannot deny that we need, yes we needed a neurology consult, a genetic consult even. I cannot deny that my son has severe sensory and fear issues. I deal with them daily.

I know now that I am talking back, I guess that is still in me. But I am not feeling the need to slam a door, so progress from my teenage years. I know I am on emotion overload tonight. I just feel I am at this place where I cannot deny the reality of our situation. I am thankful I have so many people who care for us, who are involved in our lives, who have been on this journey with us. The truth of my situation is that I can not say with certainity if my son has developmental delays that will in time correct themselves or if he will eventually plateau in development. The doctors have said that they cannot give us that answer yet either. The bigger truth is that I know that no matter my situation, my family's situation, God is bigger and God is in the details. The truth is that I need the people in my life to take me as I am, take us as our situation is now. Right now I am a mom who is adjusting to having a special needs child. I am a mom who is struggling to meet the needs of each child, to determine which need comes first. I am a mom who is realizing that mothering more than one child is a balancing act. I am a mom who needs a good cry, needs to process some things, needs to work out her own faith issues. I am a woman who is sensitive and vulnerable and authentic. I dont need to feel better about my situation, I just need to be truthful in it.

When I mouthed off as a teenager, my mom made me do dishes, I hate dishes. If I have truly offended anyone, please tell me and I will come and do your dishes.

Giant Mess, that is me

2009-12-04T22:07:00.000-08:00

These are the things I am worrying about tonight:

1. Caleb's dr. appt today
2. My vulnerablitly and the balance between authentic and open vs. private and safe
3.  What is wrong with my van and how much of our Christmas budget is going to go into fixing it
4. What wii games can I get Vanny for Christmas, I obsessed over this tonight instead of dealing with other issues.
5. I need to prepare for teaching Sunday School, physically and spiritually
6. Why have I been so impatient with CC lately?
7. I need to get in the Christmas spirit and today sent me for a loop.

On Thursday I talked about worry with some girlfriends and how God wants us to respond to our worry.  We had a beautiful scripture verse and wise instruction, obviously. But it is not happening for me tonight. I am sucumbing to worry. (oh big word but I may have mispelled it)

It is midnight. I sent out an S.O.S. to a couple friends. I am so thankful for friends, for those who are my safe place to be. I am feeling very chafed tonight, very vulnerable, I could sigh a hundred times and still not express my melancholy and frustration tonight.

And so I took my major concerns, filed them away, and decided to obsess about Wii games for my four year old. And then got angry when my husband, her father, was not as obsessive. He was able to kindly, gently give me some perspective on how I was avoiding real issues. As long as the four year old has a stuffed panda under the tree, she will be happy. My real issues, well I decided to list out the rest of worries in the hopes of facing them. I think I a can face all but the first right now. But that is why I have friends who listen and just affirm. I am all over the place in this blog. Obviously because it is midnight and I have been up since four. And because I am a jumble of emotions and worry tonight.

Isnt it funny, how I am at a very stressful and sad point, and can find reasons to discredit and put down myself (exhibit 4-7) I shouldnt do that!

I need to just be the mom who is struggling to find time or joy in all the extras of this holiday season. Even the tree seems daunting to me tomorrow. (7)

And no girls I dont want to watch one of the 25 days of Christmas movies with you, I want to get on the computer and research genetics. (6)

I am teaching about the family tree of Jesus on Sunday and examing our own family trees with the kids. And I just spent this afternoon looking at my family tree for medical defects. (5)
Ha, ho ho ho, merry christmas.

And yes I am feeling vulnerable about this blog for so many reasons tonight. One because it is jumbled and rambled and everyone is going to think I am on crack. Also because I am open and honest but also extremely sensitive and vulnerable. Plus, in the back of my mind I know I mispell and misuse words on here but do not go back and change them very often. Takes the fun out of my spontaneous writing. Or I am just lazy?

So why write this blog? Because simply I write to process, I have since childhood. Ok so write it but dont post it? Thought about it but I made a promise to God and myself last year that I would walk this out loud for Him and for me. I wouldnt pretend that things were fine when they werent. I wouldnt act like I had it together when I dont. I wouldnt deny what He has done for me. And so here I am tonight a giant mess, but not smoking crack, I promise. But a giant mess who is not ready to talk about the neuro appointment, so please dont ask. A blog will be forthcoming at some point. But you will just have to join me in my learning how to wait. WAIT!!!   Tonight I am not a patient watier.
Geez Louise I am tired. Let's also hope the tree we get tomorrow does not have a nest of praying mantis like our last "real" tree. ha, HO HO HO.

Gulp

2009-11-29T19:57:00.000-08:00

Friday we meet with the neurologist. I just had to write out that sentence to see if it would seem more real after I read it in print. This sentence has been running through my head all of today. It still seem so unreal on different levels, even after seeing it in print staring right back at me.
We have waited so long for this appointment, It's been recommended, postponed, rescheduled, and now it is almost here. It seem unreal because it seems so long in the making. From the first time I saw Caleb when the doctors pointed to his tiny head and said this is where his brain bleed is and we waited and prayed. To a few weeks later when they said his ultrasound showed some unusual things and we may be looking at brain surgery, what? It was my biggest fear after the fear of his death of course, the fear that he would have life long major handicaps. And we have been up and down this rollercoaster ride with him, from one opinion to another. But we have been waiting for the year one neuro appointment and it is finally here. What? It is finally here, you mean I may have answers on Friday? Realistically, we already have some of those answers, other answers seem possible but unlikely, others only time will tell. We have seen so many other specialists in the last year I am not sure why I have placed so much emphasis on this one appointment. I have a huge packet to fill out this week. I have had the packet since February, last minute Chris, yep that's me. His birth history is all fuzzy to me, I was waiting on his medical records for some of the questions. Other questions, we just didnt know the answer to yet, he wasnt developmentally there yet. And mostly, I have answered enough questions in the last year, I wanted to table this until I had to deal with it. Now I have to deal with it. Stupid paperwork.

I am on edge tonight, the kids are asleep, the house is quiet, and I am trying to plan out this busy week, and try not to think too much about Friday. Right now I am just in logistics for Friday: what to pack, what time to leave, what all can I do while we are up there, where are the girls going. I am on edge because I know Friday can bring about some things I never thought I would have to face as a mother. I mean really, the fact that I am taking my child to a neurologist is enough of a shock to my system. I still am not ready for anything past that. We are also trying to reschedule an eye appointment in while we are there, nothing is ever simple it seems.

I know those of you in my life have had to listen to me waiver and falter, whine and question, and really just vent for the last year. Just know that this is a big week for me, this Friday is the biggest deal to me. When it was suggested as a specialist we should see, my heart sunk. When it was rescheduled, my mind went into a tailspin. And now it is here and I gulping big mouthfuls of air, trying to muster up what I need to face this. We have seen many of the other predicted problems for micropreemies come to fruition for Caleb, sensory, vision, motor, speech, immune. But he also beat the odds on other things. Friday seems to be the day where we square off on this one issue of brain damage, nerve damage, spasticity. ( I have seen a lot of westerns in my day, so of course it is a showdown, cue western music) Either way it doesnt change who Caleb is or what he means to me but I guess it changes who I am. I am sitting here in disbelief that my child needs all these interventions. How could God possibly think I am capable and strong enough? But in my heart I know, I am not those things, He is. I dont have to be those things. I can sit here on a Sunday night, preparing for the week and for Friday knowing that my role is a mother, a teacher and an advocate for my child. The rest I can set aside and hope and trust that God is taking care of that. I am not a healer or a miracle worker. I dont have to know why, even though I struggle with asking that question often on some days. I dont have to know why to mother Caleb or the girls. I just have to know who, who am I, what is my role, who am I mothering and how can I do that correctly, and who do I need to trust for the rest. I think right now I am still at the how stage though or the why. How did this happen, why us? I am really trying to focus on just being a mother I dont have to label it any more than that tonight. Not mom of many, experienced mom, tired mom, special needs mom, just mommy.
Gulp, it's a big week. It's a busy week and that will help. Recognizing and admitting that this appointment matters, that this journey we have been on does have it's own set of milemarkers and signifcant stops along the way. I am hoping for grace and compassion from our doctor team. I am hoping for wisdom and understanding from all involved in caring for Caleb. I am hoping I can mother him and allow God to work through the rest for me. It isnt an easy place to be but it's the place I am at.

I am changing things up this Thanksgiving

2009-11-24T05:51:00.000-08:00

It's almost Thanksgiving which has always been my favorite holiday. I love all the food, family being together, and football on the tv. When I was a child, we always went to my grandparents for dinner. Their small house was crowded with family, cousins, aunts and uncles, siblings, and hunters. My cousins and uncles and their friends would hunt on my grandparents property. Inevivatbly, a deer was hanging from a tree every time we drove up the driveway. I hated that part but Marlena and I always enjoyed some of my cousins' and uncles' friends. They were loud, fun and often cute. Too funny that I remember that now.
I remember mostly my grandma bustling around her kitchen, making so many things and serving everyone else. I miss her so much. I remember my grandpa watching the parade, calling grandma in to to look at something, as if she wasnt busy at all. I remember sharing the chocolate pie with him, fighting over who received the bigger piece. My dad was always off for Thanksgiving, the post office was closed. It was a day we knew we would get to spend with him. My brothers were always glued to the tv, watching football, some things never change. The house would get so crowded and hot, we would go out and sit on the porch swings and talk, sometimes even when it was snowing.
By high school, Crave was even attending our Thanksgiving. Once as a hunting guest of my cousin, and then later years as my guest. My grandma welcomed him right in, just like she did everyone. In college, Jason even brought a friend of his home to hunt and spend the holiday with us. That was there year I may have deceived him into thinking I was a better cook than I truly am. I remember my grandma fussing over the men and insisting my sister and I do it as well. She and mom would encourage me to make Crave a plate, get him dessert, bring him coffee. I would always chafe and inform them Ja was capable of taking care of himself. My mom still fusses over Crave, and the feminist and realist in me still chafes. Because really Crave lived on his own before me, he is capable of making his own dinner and washing his own dish. My grandmother and my mother possess a giving and humble spirit. My mom and grandma knew how to serve with love, to demonstrate love in practical and tangible ways. I struggle, I have a hard time putting others needs above my own needs or pride, especially a man's needs! I encourage my girls to think for themselves, be themselves, learn how to do things for themselves. There is value in self-sufficiency and respect for oneself. I guess this Thanksgiving I am reflective of the lessons I learned from my grandmother and my own mother, lessons I tend to fail at putting into practice.
This year I am responsible for making the chocolate pie and sadly there is no one to share it with. My grandfather died when Seneca was a baby, my little brother isnt coming home for Thanksgiving. I will have a whole pie to myself and I do feel sadness over that. I am making the mashed potatoes, which I know how to make and make often for my own family. But all of my Thanksgiving memories involve images of my grandma making potatoes. I could never measure up to who she was a cook or as a woman.

I hope as Mar and I are shuffling and rushing around the kitchen making preparations we get the chance to remember the dinners of the past. There are days when my heart cannot believe my grandma is no longer with us. I miss her so much, my girls miss her so much. Crave misses her so much. She so lovingly cared for each of us and made each of us feel valued and special to her. She did that by serving us and caring for us. To me this year, this holiday that principle is more important than any feministic or self-serving principle I have. I say that knowing full well my brothers and my husband and brother-in-law would knowningly and willingly take advantage of my change of heart. I can see them all day requesting more tea, another plate, more dessert and chiding me if I rebel and grouch. Luckily, none of them read my blog and so they wont know about my change of my heart, my new charge for this week: to show my girls and myself that our actions and attitudes make such a difference to others ability to feel loved and valued. I am very good at using words to affirm. I am warm and affectionate. I struggle with humbling myself and putting others needs above my own. So this Thanksgiving I am thankful for Thanksgivings of the past, of family gatherings and wonderful food and of lessons learned that are lifelong. I will make yummy, smooth mashed potatoes and I will work to show others I love their value to me in practial and tangible ways. I will say, "Yes, Crave, I would love to get you a slice of pie," and mean it. I will not say, "You have legs, get it yourself," to anyone this year.
Happy Thanksgiving!!

monday is here

2009-11-22T22:54:00.000-08:00

It's officially Monday. I have made no deciscions about Little Man's treatment plan. Stike that, I have decided to wait to make a decision after the holidays. Indecision and waiting are not action words but they are the actions I am taking right now. I feel at peace about waiting to start in the new year. The suggested plan was time consuming, highly structured and not manageable right now. I spent the week evaluating our schedule and our family dynamic. I also spent time in prayer and in quiet, not trying to force a decision.
I carried a notebook around all week, documenting our time commitments, priorities, and family and individual routines. I also kept notes, per therapist instructions, on Caleb's 'quirks,fears, irregularites' Basically spent the week documenting what was abnormal about my son's behavior, movement, mannerisms. I cried more this weekend than I have in a long time. Behaviors and quirks I wandered about before make more sense when viewed through fresh eyes. When you know what to look for, it is easier to see.
Ja and I had late night conversations, it was easier to talk in the dark about our fears and sadness. Caleb was a more agiated baby this weekend as well. I think in reality, Ja and I were more attuned to his comfort level and his reactions to stimuli. Before when he fussed, we would attribute it to hunger or the need for a nap or attention. This weekend we were on the look for triggers and responses. The list of these is longer than I realized and this troubles me.

When we started OT therapy, I just wanted help for his feeding issues. I wanted him to be able to eat table food without fear and gagging. I did not think it went much deeper than that and I honestly believed it would be a quick fix. A couple months, at most, of working to build up his comfort and skill level, I thought we would quickly relieve his feeding issues. Now the reality of a more complex and life long issue is settling over me and it feels very heavy.
We were given the clues to look for when Caleb feels threatened or stressed, when his nervous system is on overload. I saw those clues come into play when Jason or I would try to cuddle him and my heart sunk. I have realized this week that we have to meet his needs on his terms. I so long to sit and rock him all night, to hold him close to me and feel him mold into me, into my body. Unfortunately, his body cannot process that right now and so my feelings must not be prioritized over his needs. It is hard place for me to be in as a mother.
Other things seemed to line up, to make sense this week as we looked for clues and behaviors. His constant mouthing of toys, his constant motion; all ways to provide a soothing sensory experience for him. We have some suggested therapy options and we are hopeful they will work, that they will lessen his defensive responses. They require being intentional in every aspect of his care. We have been intentional so much already in his life, intentional for his gross and fine motor skill development and for lessening his spasticity. I had hoped we are almost done being intentional and could just be. It is hard to carry extra guidelines and emphasis in the back of your mind. To use forethought in every activity from feeding to diapering and bathing to play and social time Pick him up this way, hold him that way, talk to him this way, move him that way. Aghh. It became exhausting. Activites and moments that were natural to me as an experienced mom now required new thought processes and adaptability.

I made a list this week of things about my son that were abnormal. How very disheartening. heartbreaking, traiterish. Yes, I feel like a traitor in some ways. Because I love this little boy, quirks and all. I love him as he is now. with all of my heart. I have to remind myself that identifying and admitting is the first step in helping him overcome this "issue"
I struggle so much with not wanting his prematurity to define him. He is 15 months old now. And this is our next step, continuing his therapies, working to identify and move past his fears, one sensory issue at a time. The first one being his fear of eating, chewing, swallowing. That takes precedint over cuddling issues. I know this because I know Caleb still has the ability to show and express love and to soak up love and affection. One can clearly see that reality any time he is with his sisters or us. My hope is that one day soon, I will get to just hold my son and be. Be his mommy. His comfort.

(I know that I have not shared Caleb's new diagnosis with everyone and so some of you may wonder what I am talking about. I really dont want to go into it, to label him any more than he already has been labeled. Or spend time discussing his treatment plan and the options we have and are considering. The easy explanation is that Caleb, being a micropreemie, was never able to fully develop his nervous system and we are seeing the ramifications of that now. My belief is that therapy is beneficial and God is bigger than any diagnosis we have received or will receive.)
And so we work and we wait. And one day we will get to just be.

Being quiet, at least for a day or two

2009-11-18T07:40:00.000-08:00

Feeling overwhelmed and pressured today. The internet is a wonderful tool, and I admit, I am somewhat addicted to it. Email, facebook, blogging, netflix, google: all part of my day now. I love how I can communicate with my brothers who do not live close, my sister and I can email back and forth throughout the day. I can find old friends and stay in contact with long ago friends and new friends. I blog my thoughts and can share so much more effectively where I am at emotionally and spiritually. I love the perspective I get when I can type out my feelings and organize them. I love how I can watch foreign movies and brittish miniseries on Netflix on the nights I can't sleep. I can print off coloring pages for the girls and help them learn facts about the things that interest them. I love the internet!
The last few days I have used the internet to research and examine a diagnosis and treatment plan for Caleb. I am finding it overwhelming, so much information, so many different opionions. Will we choose the right course of action, and in the right time frame? I want the best for my kids and I want to do all that I can to help. But I am feeling the need to evaluate and set boundaries, almost like setting the search parameters on a google search. I have too much input right now, too much information, too much expectation and anticipation of a decision. And so I have decided to just rest today. Not rest physically because my house is a mess! But rest in my research, rest in my conversations about it.

I am not being like an ostrich and burrying my head in the sand. I am choosing to sit still and trust in the promise of God. Some days I just desire to be still and know.
We are to come next Monday with our list of questions and concerns to discuss with our therapy team. Also coming with our evaluation of our family life and schedule. Today I feel as though I cannot fit one more thing in my life but I know my schedule and my priorites can be rearranged and shuffled.

I have always been one to say, "Trust the process. There is growth and a wealth of insight and meaning in the process." By process, I think I have always meant the treatment plan we are on, the step A to step B and C schedule of medical interventions we have been on. My advice to new NICU moms is that, Trust in the Process. Allow them to work out the breathing and heart issues before moving on to feeding and growth, etc. And we have done that, now we are on to the part of the process we were only forewarned about in the NICU. It seemed so far in the future and not at all plausible when we were in the NICU, and so my mind did not dwell on the future, expected and predicted issues. In truth, much information was not alloted by the doctors just an allusion to future issues: learning delays, motor delays, nervous system comprimise, feeding issues. They seemed so much smaller than the major health issues. Well now we are in those expected issues and I can say they no longer seem smaller or less intense!

For now I am taking time off of the trust the process sentiment. Not that I do not trust, I am just chosing to rest, to be quiet and still. I know there is help out there for us. I know his therapies are working. I am not sure what our next step is. I have decided the only voice I want to hear from right now is God's spirit. I value and trust the other voices in my life, family, medical professionals, experienced parents, but for now I am overwhelmed and need God's direction and his peace.

"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love." (Zephenia 3:17)

coffee=clarity?

2009-11-16T22:46:00.000-08:00

I feel like I have about three or four different blog posts running through my head tonight. Probably because I had coffee tonight and I dont usally drink coffee because of it's hyperactive effect on me. The more plausible and true reason would be that I have had an emotional weekend with different events, conversations, and happenings and I am trying to compartmentalize and organize all of them.

I had a lovely time tonight, coffee with girlfriends, and chocolate donuts, and conversations and a total of 3 Chris's. Apparantly in the 70's, Christina and variations of Christina were popular name choices for a little girl. Here in my town, in my circle of friends, I know of at least 8 Chris's. This makes me smile and giggle. But I digress from my original train of blogging thoughts. My mind is scattered and I am feeling the need to filter for my own sanity, one issue at a time is all I can handle. Yet, I am balancing or trying to process at least four seperate issues.

What is it about women, about moms, that when we get together we discuss birth stories, labor stories?   Tonight during coffee we did, we discussed birth stories. Not horror or scary stories but entertaining and informative and beautiful stories. It was nice because no one was comparing or contrasting or stating that her birth was better or more affirming. There wasn't a debate over natural versus epidural or casearan, which for me was very refreshing. I have been in those discussions before and they can make birth, something so beautiful, turn into an ugly heated accusatory topic.

The topic of birth and others' stories caught me off guard tonight, I am finding more and more things are catching me offguard lateley! It was my first face to face discussion with other women about birth, after my grueling and traumatic birth of Caleb. The discussion also occuring soon after a viewing of "Birth in America," a new documentary of one couple's birth journey. I watched the movie at a screening on Friday night and acutally left midway through with tears in my eyes and almost in a state of panic. I could not finish the movie, I left briskly walking for my car with such a need to escape. Nothing against the movie, my heart and state of mind just too freshly wounded from my own painful birth event. While watching the movie I was confronted with my own feeling and loss of control during Caleb's birth. Emotions I had buried came quickly to the surface and I was forced to face them. I faced them for all of about five mintues on my way out of the theatre and my drive home. I came home and held my baby and refused to think of anything but the feeling of him in my arms and his immediate needs of food and sleep. Once he was asleep, I had calmed my self and proceded to drive back to the theatre and assure my friends I was fine. Ha, fine, really? More like in denial and happily so.

And so guess what happened when the birth conversation came up tonight? I actually enjoyed my one friend's lighthearted and somewhat comical home birth stories. One, she can tell a great story; two, they are great stories: and three, I can acknowledge and celebrate that birth is beautiful and life is beautiful. Others began to tell their stories and it was fascinating to get to know this side of my friends; of the moments that led up to them becoming mothers. Then a part of me started thinking of my own births, I have had four. I have four incredible children. Unfortunately, my mind is stuck, stuck on the traumatic and scary birth of Caleb. I have heartwarmng and funny moments in the births of my girls but my mind and my heart only quickly visit those before everything goes back to the moments and events of Caleb's birth. And tonight I felt stuck, stuck in that feeling of vulnerabilty and fear, of violation and a total lack of control. Calling his birth jarring is an understatement, perhaps the biggest understatement of my lifetime. I had to leave the table tonight and go to the bathroom, for my own comfort. Yep, that is what happened, I became emotional and had to shelter myself, ESCAPE!

Not one of my friends tonight would mind my tears or my sadness, they are all generous and kind. My own pride and coping mechanisms would not allow me to break down, a few tears is fine but more than that is unacceptable. So I collected myself and returned to the table and was able to share a little of his birth story. I am thankful they listened with interest and kindness, more thankful than I could ever express in words on a paper. I know Caleb's birth was not all trauma, there were moments of grace. I also fully recongnize that my son is a living miracle boy, that I also am fortunate to be alive. So easlily I could have lost my son or my own life. I have shared some of the emotional trauma from our time in the NICU. I have not shared of the other logistics of Caleb's birth or the 'story' of his birth. After this weekend and tonight, I have realized that I need to share and speak of it.

For so long and for several reasons, I did not speak of the trauma of Caleb's birth. I did not want to scare others or make birth seem more scary than it needs to be. Most births are not like his, most births are not as risky or frightening.   I did not want my birth to turn into a discussion of the statistics or talking points on c-sections or prematurity. I did not want to have to explain or justify my c-section. I was also dealing with guilt issues, knowing my pre-existing condition was the cause for my high risk pregnancy. The guilt is something I constantly have to check myself on, and one of the many reasons I am thankful for my faith. I was also jealous of others who had full term pregnancies and easy, breezy deliveries. I didnt want to show the green-eyed monster to others. I also was busy coping with other major issues for Caleb and so my own emotional needs were put on hold. I had other pressing traumas to struggle through, more tangible, visible issues.

In these months we have been home, I have shared in confidence with others of my trauma only to have them say I should just be thankful for Caleb. Oww, that hurts on so many levels!!!! Each day I am thankful for my beautiful son. But cliches and feel good sentiments do not erase bad memories or the deep, dark feelings and events I have been through. And so I did not speak. I did not deal, except for brief moments and then I would talk myself out of deeply feeling or recongizing my hurt.

Coping. Denial,...Keep on keeping on.

Tonight in the midst of coffee and girlfriends, I realized a few things...
Timing is everything. It is time for me to deal. And so first I want to say, I have had beautiful births. I have some funny moments in each of my births, even Caleb's. I am thankful I was able to give birth, to carry children in my womb. But, I have had hard births. I have had scary births. I have also expereienced trauma that broke my heart, shattered my peace, stole my feeling of control and privacy. I can rejoice in the gift of a son, a courageous son healed by God, while recognizing that the events of his birth caused much emotional pain. And so in the weeks ahead, I hope to take time to confront these events, to examine and think upon them. I will not dwell on the things I cannot change but I do feel the need to at least speak of them, or write of them.
I am a firm believer in being who you are. I don't want pretences. I want authenticity. I am so thankful for the others who take me as I am, who lovingly and graciously allow me to be broken. Thankful that others do not pity me or try to "fix" my brokenness. I am asking and trying to allow God to reshape my brokenness. I need not pity only grace.
I'm Chris, I am. (we also talked of Dr. Seuss tonight)

Pizza and Envy

2009-11-13T12:26:00.000-08:00

Two evenings ago, we went out to eat as a family. We crowded into a booth and shared a couple of yummy pizzas. Caleb remained buckled in his carseat and happily drank his bottle. It was a fun evening, we rated the pizza against our childhood favorite pizzas and laughed and played silly games. Crave and I even made googly eyes at each other across the table. When we were all paid up, we bundled up and headed out to the car to head home. As we were leaving the restuarant I just happened to glance in the window and saw a young family with a baby, around ten months if I had to guess. He was buckled in a wooden high chair. I watched as they studied their menus and he brought his hands together to clap and clap and clap. He was so animated and lively. His parents looked on, probably trying to decide which pizza to order. But something in my heart ached, almost ripped. I wanted to tap on the glass and point to there baby and have them notice and admire him. No doubt they were devoted and attentive parents, they safely buckled him in, provided toys for him, dressed him warmly for the cool weather. But my heart ached because there baby was doing something my little boy can't or won't do. Something I have been working and encouraging for months with him to do, clap his hands and have expressive, interactive play. This family took for granted this develpmental play moment, and I have been anxiously waiting and working for it with Caleb. I also admitted to myself that I took those moments for granted with my girls. So many normal and interactive activites and moments I never relished or appreciated as much as I could or should have. From first laughters and first words to reaching out for me and playing with me, moments I long for with Caleb, moments I savor so much when they do happen or when they will eventually.

Our therapy assignment for the last two weeks was to have more interactive play, to encourage him to knock things over and bang them together. His illness and the rest of the familys' illness as well has halted our play therapy. And so when I saw that little baby doing the things I so want Caleb to do it was like time stopped for a minute. I spent the rest of the drive home and the remaining evening quiet, introspective, and stewing in my own jealousy, envy and regret. Not a great place to be, noting every thing your child is NOT doing that others' babies are easily doing. Angry that everything is so much more stressfull and planned out,it is play therapy and not just play. Sad that I am not just enjoying the wonderful things he is doing now like crawling and rolling and smiling. Guilt that I am not focusing on how far we have come but instead on how far we have not come. Envious that I did not get the beautiful birth and bonding time of his newborn months and the months of his infancy have been work and worry.

I am aware more so each day that he is my last baby, that my 'baby days' are soon over. Before his birth I had worked up that expectation in my mind and heart. How fitting I thought to have a little boy as my last baby, I could enjoy all the other things of infancy that I love and also learn new things in mothering a boy. I did not know that the stages of infancy would be so different for Caleb and I. I had no idea our journey would be so different and difficult. I did not know I would learn so much more than just how to mother a boy.
With the girls I easily glided from one stage to the next, looking forward to the first smile, coo, crawl, step. With Caleb it has been so different, each milestone has not just "happened." It has required work, exercise, discipline, forethought and prayer. He has come along way from when we first brought him home. I remember vividly his first months home. His neck was so stiff, he could not turn his head. Baths were a struggle and not a joy; his neck muscles were so tight he was hard to wash. With many months of therapy and exercise, he has almost full range of motion in his neck. So therapy is working, he is progressing. I know I should just be thankful for that and remain in that mind frame. If only I weren't human, right?
I can say I do not spend every day asking "Why me?" or "Why us?" Most days I am caught up in how blessed we are to have him home, how sweet he is, how far he has come. Even though he does not cry out for "Mama", his eyes and his whole body cry out for me and light up for me. Even though he does not clap or bang or "play" like others, he still finds joy and brings joy. Will these milestones come, oh Lord I hope and pray. I cannot begrudge others for happy, healthy, normal children. I can only encourage them to look up and see how amazing their babies are, how blessed they are to enjoy the moments and milestones without all the extra work and worry. I hope I do not sound jaded, I try to keep that in check. God is good and He has blessed us so much. My sweet little boy is a living miracle baby and I do believe God continues to work in him and heal him. I did not realize I had so much more to learn as a mother!

bodies on the mend, hearts not so much

2009-11-09T10:06:00.000-08:00

Bodies on the mend, hearts not so much. We spent the weekend in the hospital with a sick little baby boy. He was in isolation so his sisters had not seen or held him from Thursday evening until Sunday afternoon.  Crave and I switched off on childcare but neither of us got much sleep.  Little Man sick in the hospital, Panda with a bad cough at home. Crave spent one night in the hospital with Little Man so I could go home to sleep. I did not sleep, I awoke about five times, sleepily stumbling into his room to realize he wasnt there, he was at the hospital. I finally curled up in the rocker in his room and slept fiftully for a few hours.

He is home now, recovering, still tired and weak but well enough to be home. He had the sweetest smile when he saw his sisters' anxious faces. He reached out for them and his eyes just sparkled. Love and adoration, belonging, such sweet emotions.
This morning his older 2 sisters begged to stay home and be with him. They made promises to change his diapers and help me catch up on laundry and dishes. They didnt want to be seperated from him and they didnt want him to feel alone. It was so incredibly sweet but I sent them to school anyway.  Panda woke late and went straight to his crib to wake him with an insistince that he was needing her in his sleep and she wanted to be there when he opened his eyes. He took a bath with her and her Barbies and he was all smiles.  Panda spent the morning continually asking me to hold her and hug her. "Squeeze me tight Mommy, I missed you so much when you were in the hospital."

This weekend was rough with our kids in two different places, having physical and emotional needs that required tending. We had quite a few meltdown moments but I am thankful that my girls know they can say anything, express any fear or emotion and still be loved and affirmed. Jealousy, resentment, fear, blame, anger, loss; these emotions all abounded this weekend. Some were spoken and some were acted out. My energy was depleted and my reserve was on low but through God's grace we managed to make it through the weekend and this morning with a semblance of peace in the midst of struggle. I want my kids to know that no matter what life throws them, they have a place to fall, a place to be.  Growth doesn't come from denying who you are or what you are feeling.  It's hard to see your kids struggle or cry or fight with each other. I want everything to be easy and beautiful for them but it doesnt always work that way and it probably should not.  This weekend we had a minor setback, a flashback of instability and worry from last fall.  Senny Sunshine kept talking of seperation and disruption, funny words for an 8 year old to focus on! The girls have learned Little Man's health and immunity are more vulnerable to sickness. They learned we can try and be preventative but in the end we just have to be willing to trust that God is more in control than us. I hope we all recover quickly, physically and emotionally. I do not want the girls to live in fear for their brother's health. I also do not want them to feel insecure or have seperation anxiety. But I cannot control how they feel all I can do is respond with love and affirmation. And try to keep my heart and my energy reserve focused and balanced.  I have learned so much in the last year about myself, others and life. I can say I am sick of learning lessons but they have all been so valuable, how can I not embrace them?

Happy Birthday CC

2009-11-05T20:01:00.000-08:00

My oldest baby turns 11 tomorrow and I can hardly believe it. Sometimes it seems so long ago she was a little baby and other times it seems like it was just yesterday. I drove up to Columbus today for appointments for her brother and on the way up I was thinking of CC, of her first years, of how time flies, of how life has changed so much from when I first became a mom.

I remember so well the night I went into labor with her and her birth in the middle of the night. Who knew how instantly my life would change for the better, how big my heart would grow, how infinately small I would feel when presented with the gift of fresh, new, sweet life. Crave and I were newly married, I was barely 21, we lived in Columbus admist his old single college friends. Did I mention single, yep, we were the lone married ones, and then we became parents. Crave's friends were all starting their engineering careers, my friends were all still single and still in college. And Crave and I welcomed a baby girl into our fun, busy city life. I know when I first heard her cry,my world had just changed. She reshaped my heart, she gave me a new pupose, a new focus. This little tiny bald baby made me a mother, a mommy, a momma.

My life is so different now, four kids, some knowledge of the different early stages, some foundation of parenting down, and a whole group of fellow moms, moms in the trenches and my cheerleader or mentor moms, moms who have been where I am now and are encouraging me. I didnt have that when I first became a mom. I had the example and advice of my own mother but honestly I had not gained a full respect or appreciation for her as a mother yet. I wanted to do things my own way and I had not yet come to fully recognize the beauty and treasure I was given in my own mother. I look back at that young mom I was and I smile at what a beautiful gift I was given when I gave birth to CC. In so many ways she made me and reshaped me.

My baby is eleven. My sweet curly redheaded little girl is now a young girl, almost a young woman. She is such a treasure and such a light to me. My sister and I call her our conscience sometimes. CC is thoughtful and respectful, moral and modest, full of generosity and empathy. She loves to make people feel good about themselves and she can be so silly. I receive compliments on a continual basis about her from teachers and classmates' parents, friends and family and even complete strangers. People who remark on her beauty or her manners or her giving spirit or kindness and service. She has a true servant's heart and an openness for Jesus and the things of his spirit that touches and encourages me.

I have so many CC stories I could tell, stories that would make you roll on the floor laughing and stories that would make you cry sweet tears. Stories that would challenge you to examine your own character and ask am I that mature or that generous? Most of the stories I have written down to keep me going after my nest is empty. But I also try to sometimes quiet myself and allow CC to speak for herself. And believe me she could, the girl can talk to anyone, and often does. I try very dilligently to allow CC to define and describe herself. I do not want to put labels or defintions upon her. I do not want soceity or her peers to put those labels on her either. What I want is for her to examine and define her own self. One of the most important characteristic I want each of my girls to have is confidence. I value it and I strive for it for them. I want CC to have confidence in who she is as a daughter and sister. I want CC to have confidence in who she is as a person and friend. And most importantly I want her to have confidence in who she is in the eyes of Christ and to have a perspective that knows she is loved and valued by God.

CC is my first born, my beautiful girl who came and reshaped my world and my perspective and my heart. She is a capable and giving child. Her antics easily charm and disarm me. Her eagerness to do good and be kind in extraordinary ways amaze and challenge me. Her empathy and understanding for those less fortunate or hurting touch me and others deeply. She has an incredible grasp on the depth of God's love and sacrifice for her and she willingly and knowningly shares this with others; her friends, family, strangers. She has a desire to lead and organize and an uncanny abilty to make lists for everything. (a trait from her father, no doubt)

I see her poised on the brink of teendom, but even more so on the brink of becoming a young woman. It doesnt scare me because I see what a fine person she is becoming. But it does make me reflect on those sweet baby and toddler moments, those moments with just her and Crave and I. How quickly time came, how quickly time moved on. I remember so sweetly holding her in my arms so long ago and now she is nearly as tall as me. Our cuddling is definately different but still sweet. Our talks are less and less negotioations and now more dynamic conversations. I have watched her switch smoothly from only child to sibling. Tonight, I watched her lovingly hold her baby brother and cuddle him and I had to catch my breath. I remember snuggling her that way as a baby. Gasp, time moves too quickly but yet at the correct speed. I am thankful tonight for my beautiful oldest daugther and the change she brought to my life on a early Friday morning eleven years ago. She made me "Momma" and how incredble is that!

If you see her tomorrow or this weekend, wish her a happy birthday. And let her know I didnt share any of her stories, not about oreos or pudding or penguins or removing casts or fish named Henry or sleeping beauty or crushes.

Uniqely me, thoughts from a twin

2009-10-26T07:45:00.000-07:00

A quiet mid-morning here and I have enjoyed it so much. Little Man napping and my Panda curled up beside me watching a movie. The early morning was rushed and did I say early?. Crave up with the baby so I could curl up under the covers a little longer. I enjoy his effort in the early, before sunrise attempts at conversation with me, after many years of living together he should know better. I am not pleasant in the morning, I am grouchy and annoyed. Yet each day he continues to include me in his early morning rising ritual. It usually goes like this, "Do you know where _____ is?" Or "Can you do this for me today?" I often mumble a response, roll over and pretend he has already left the house. One early interruption per day is my concession. I wonder if he knows that after he leaves, I always offer up a prayer of thanksgiving for him and a prayer for his safety and work day? See, I am not all grouch in the morning. I wish I could muster up the devotion at 5am but my whole body and my mind protest. I am examining that protest today. I think partly because my memory has been triggered by other events on this rushed early morning. Stick with me while I try to piece it together.

I am an identical twin who spent most of her life trying to be noticed for just me and not part of a package deal. Recently I have been examing how much of my personality is really truely me and how much is just a protest and an intent to be different than my twin. Events this morning transpired that brought a smile to my heart and also an introspection to my day. It's picture day for Senny Sunshine and CC. CC awoke and did her usual morning ritual, everything quick and rushed because she just wanted to sleep as much as possible. Senny awoke early, and pleaded with me to curl her hair. I put her hair in hot rollers and watched as CC kept the covers over her head as long as she could before hurriedly getting dressed. Now my girls are not identical twins but they sure played the roles of Chritina and Marlena (circa 1990's) quiet well. I was just like CC, sleep til the last minute and then a ponytail and off to school. Senny just liked Mar, even 'the birds are singing early morning chatter' so distinctly Mar. It made me miss my twin and are living together so much. It also made me think about our personalities and how different we both can be. How much of that is realistic and how much was me saying, " I want to be an individual so if she zigs i will zag? "

It's an interesting question, one I have been delving into at different times in my life. We no longer live together, Mar and I, we don't even live in the same city, like college and our early twenties. I miss her terribly but I do feel I am more of my authentic self nowdays. It is like I can shed my feelings of not measuring up to comparisons because for the most part I am not being compared on a continual basis. Now I know there were things I excelled at and things Mar excelled at and sometimes they were the same things. I also know that I do have characteristics that are uniquely me. Those characteristics were not always celebrated but often compared or critiqued. I can honestly say at times I chose to do the exact opposite of Mar just to avoid comparison. Mar an overacheiver, well then I am a going to be a slacker. Mar - glass overflowing with optimism, well then my glass is half-full, dirty and the handle is missing! See what I am saying, I took it to the extreme, ask my poor mother about my high school attitude. Mar was compliant, well then I will miss curfew and be proud of it. Sorry mom.
But here I am, married, mother, mid 30's, finally feeling at peace with who I am, not trying to prove anything or challenge anyone's conceptions of me. I am realizing more and more that I am uniqely me even though I share the same DNA as my beautiful twin. I am ok being compared and contrasted to her nowdays becauseI feel I can stand on my own. I am not sure where or when the self-assurance or confidence finally appeared. Perhaps it does come from being married, motherly, and mid 30's?

I am still examing this I hate mornings personality quirk and my twinness. Nowdays, I embrace my relationship with my sister more than ever. There is something powerful and comforting in having a sister, even more so I think in having a twin sister. I think also nowdays I get to be the star of my own life, I don't have to share the stage and that allows me to relax a little about who I am. I am guessing that I will never arise singing with the birds, yes Mar did do that! I will never be a morning person, mid morning is even a stretch for me somedays. However, I can say that now I am more authentically optimistic and authentically grouchy. If I am grouchy, it isnt just becasue Mar is happy and so I need to be the opposite. No, nowdays I am grouchy for legitimate reasons.
On a side note, I know both my Senny Sunshine and my CC will have beautiful school picutes today. They are both so adorable and they have been warned to smile like they mean it and no cheesy smiles! I am so thankful my girls have sisters and I try to teach them to treasure and guard those relationships. I also try harder than most to see each of them as individuals. Although I just spent this post comparing them to Mar and I. OOPS!

Highlight of my day

2009-10-20T19:01:00.000-07:00

Today I brought my first Christmas present of the season at the same time I bought a Halloween costume for another child. A panda lover will be happy on Christmas morn, that is if she is still into pandas then. A flower child is already happy as well. I gave her the halloween outfit, a hippie dress. Two purchases in one evening representing two different seasons and holidays. Productivity!

We also played animal charades tonight, someone acts out an animal and the others guess what it is. Panda was the best, I wish you could see her lobster and her turtle. Also every other turn of hers was a Panda encounter, too cute. Senny and CC decided to act out their bible lesson on lambs and goats. Lambs follow and goats do their own thing, excpet they forgot to assign an animal to each other and we ended up with 2 goats. Crave kept assigning me animals that had to crawl, I know why but it was still fun. And I wish I had videotaped his dolphin reenactment, complete with sound effects.
I know this is all highly fascinating to read. I just wanted to document the higlights of my day. Crave as a dolphin will probably be in my top five higlights for the month, actually. Animal Charades, better than tv.

Blue sky, cloudy heart

2009-10-18T08:23:00.000-07:00

It's chilly outside but looking out my window I see a beautiful blue fall sky. It's been a rather long weekend with a sick Senny Sunshine. She and I spent much time in the ER this weekend, now we are home. She is still recovering and the rest of the family is at church this morning. I am sitting, staring out the window, longing to be out there, even in the cold. The fall colors are beautiful, I missed fall last year. I spent it in a hospital room coooped up and in a mental fog of worry, sadness and depression.

I spent this weekend watching her struggle to breathe as tears silently streamed down her face from the pain of her sore throat and I could do nothing. Oh how it hurt, it sucked to be helpless and fearful; this is not who I am as a mother in most moments. We scrambled to find childcare. CC fretted but adjusted., my oldest child, the one who has to be capable and help out. Vanny full of questions and a stubborness I could not deal with this weekend. She loves her grandparents but she did not want to go. She knows this process of hospitilizations and seperation. I called Ja about four times through the night from the hospital. I didn't need to really, she wasnt that critical, if she was still breathing on her own. So yeah how did that become my new indicator for worry, if a child isnt on a ventilator no need to freak out. Because I did freak out some. I was crawling out of my skin in that little cubicle, watching her O2 drop and buttons beeping and thought this is just too familiar and I need out of here. Eventually the steroids kicked in, her asthma incidents subsided and we were able to go home. Thankfully! The rest of the brood home late last night, a quick kiss, pleas for snuggling from each of them, pleas I left unasnswered, unmet. I was fearful that I was to germfully contaminated to hold them. We cannot pass this virus around, Caleb is too fragile for that. Unmet needs = Mommy guilt. Even today the needs remain somewhat unmet. I know each of them needs time to process and speak out loud the fear they had, the frustration of being shuffled and passed around. The desire for reassurance and order is strong in my children after a year of unknown and disorginization. I am the mother, I am supposed to provide that order and that reassurance.

I awoke in a bad mood, overtired emotionally and physically. Disjointed and furstrated because my own needs for reassurance and order are not being met. It is only the begininng of flu season, what everyone is saying is going to be a deadly or more serious flu season. I have tried hard to not fall into the hype or the fear but I must say this weekend it overwhelmed me. I sat last night holding my sweet little eight year old during her breathing treatments with tears in her eyes as she shared her fear of dying. Somewhere she has heard that the flu this year is deadly and she internalized it and was so afraid. I know the not being able to catch your breath or take a deep breath is scary in itself. I know also she spent last winter wandering if her brother would die. And so I held her and with tears streaming down my face also began to pray for peace and to thank the Prince of Peace.

I do need order, I do need reassurance and I do need a break from just living in survival mode. . I know I need to take the time to process. More than anytthing I know I need to take some time confronting my fears and frustrations and allowing peace to come in my heart. It's been a long weekend, it's been a long year. I feel as though I cant take much more but I know it's only the beginning of flu season, my children are still quite young. I cant seek order and assurance in the things of this world because they are hollow and uncertain. I am thankful for my faith and for my own relationship with God. I am thankful he allows me to waiver and question and vent. I woke up in a bad mood and I cant say I am out of it yet. I have at least recognized it for what it is: A mood brought on not just by lack of sleep and a messy house and children who are acting out, but a mood brought on by the by the battle between the desire to have my own needs met before I have to meet someone else's needs.

I have been in survival mode, with moments of great mommyness inserted, but mostly SURVIVAL. Perhaps self awareness is the first step in moving out of survival mode? Kind of like when you are lost in the woods, you should not move forward until you get your bearings. And so I am aware of my self, aware that I need order but I cannot create that order. I need assurance but can only find that assurance in my relationship with Christ, nothing else in my life is certain. I need a place to be and a place to vent, yeah blog. I need to move forward but not until I have let go of this fear and this "why me", or "enough" attitude. I would like a supermommy moment today but I am willing to concede that I am tired and frustrated and sad and so we will only get a real mommy moment. I think really that is probably better, my kids cant move forward from this crazy year if they cannot admit where they are and who they are now.
The sky is so beautiful and blue and days like this make me feel hopeful, when the weather, ok scenery, is beautiful and it feels like anything is possible. Here is to hoping it is.

Thoughst from an Oscar the Grouch

2009-10-12T20:18:00.000-07:00

I am so not patient. You would think after four children, two pets, and a husband I would have gobs of patience to put into practice. Nope, I have gobs of laundry, dishes, good intentions and half-finished projects but not patience. My blog is even named Hold On, and tonight that makes me laugh, makes me grimace, makes me feel quite like Oscar the Grouch.
My patience is wearing thin for peace in my home,seriously when does the arguing and bickering between siblings stop? Tonight I think I used scripture threateningly to discipline my girls. "Stop fighting, the bible says to outdo one another in love and if you dont start doing that I am going to take away the comptuter, movies, telephone. None of you will have any fun so start showing love or the fun is gone!" Yep, that was me and as I was saying it I was having flashbacks of my fights with my siblings and wandering was my mom this aggravated, how did she respond? Now my siblings and I are all pretty close and I am so ready to bypass all that sibling rivalry and lesson-learning with my own kids for my own peace.

If I am honest my lack of patience is more than just a desire for peace in the home. It's a desire for peace in my heart. My heart has been torn in two in the last year and I am ready for it to be mended completely. I still feel as though I havent made a complete recovery from the trauma, disappointment, sadness, and stress of the last year. I am ready to bypass all the steps I need to completely heal, the reflection, the growth that comes from walking it out, if someone would just give me some peace or a glimpse of when it will get better, easier. I desire mostly to know of the future, of the peace that could come in knowing that Caleb and the girls will be alright. Caleb won't have suffered brain damage from his brain bleed, Caleb wont have developmental and learning delays. Caleb will walk unassisted. Caleb will not get the swine flu, or RSV or even the regular flu and become seriously sick or be near death again. Caleb will learn to eat without panicking, without gagging and choking. Caleb will say momma and daddy and wave bye bye and clap. The girls will feel secure in our prescense and not fearful that every seperation is scary and long. The girls wont have to feel like their needs arent as important. That is the peace I want, the assurance that all these questions and fears will not come to pass. That my sweet baby boy will not be defined by his premature birth. I want to move out of survival mode!!!

My patience was tested this week once again and I feel like I have hit a wall. Several of Caleb's doctor appointments were rescheduled. We got a letter in the mail informing us of this. It felt so informal and cold. Didnt they know I have been waiting for this appointment since May, and really since his first few days of life when they said he had a brain bleed, but we would just have to wait and see. And so I have sat here all week letting God know that I am not patient, that I am done waiting. This is my wall and I dont want to scale it, rock climbing was more Ja's thing than mine. So no thanks, just move the wall, make the wall disappear, anything as long as I dont have to do it. The silly and honest thing is that I know peace isnt on the other side of the wall, even if I could know the future, know all the outcomes for all of my kids, peace isnt in that. Peace for me comes in knowing that I havent walked any of this alone, and I wont have to now.
As a mother I want the best for each of my children. It is hard to have so many concerns and fears about my children. I want to know that Caleb will walk and play and eat and talk. If I am not careful those thoughts can overtake my day. I did not realize that a year after his birth we would see so many specialist and doctors. Making time for his therapies and appts, working on them at home can be so draining and frustrating.
Lately, Caleb has been doing this amazing thing, when he is on the floor he will make a bee line straight for me and manuever himself in my lap. As if he would rather be held by me than play with any of his fun toys. He wont let me hold his hands or help him do anything, but he will find his way to my lap. It's a reminder to me that I dont have to be patient, I just have to be present.

My mom says she prayed for patience and God gave her twins, so I dont ever pray for patience. I am asking Him to allow me to be more present with each of my kids, with Him, with Jason, and with myself. I dont have to climb the wall, I just have to admit I am standing next to a wall feeling overwhelmed and tired and trust that He will see us through.

Seperation Anxiety

2009-10-07T19:29:00.001-07:00

I've been in a funk as of late, had one of those weeks, I almost want to say one of those years! But I won't be that extreme. I've also been thinking of another f word and it isn't funk, but I won't go there.
Yeah, it's been one of those weeks and I forgot to safeguard my heart. The unoffendable heart is definately absent this week. So hear it goes, my heartache, my frustration, my anger or self-preservation. Someone said something without thinking 4 days ago and I'm still reeling.
Caleb has just started having seperation anxiety and secretly I love it! No, not the tears or his fear, but that he recognizes and needs me. I was explaining to a friend my new wave of exhaustion due to Caleb's anxiety. Then she spoke, (without filtering) “That's great. I guess he doesn't have mental defects then." I smiled, nodded, and walked away. On the inside I was insulted and infuriated and brokenhearted. Finally, a normal developmental milestone I could relate and share in this stage without all the extra preemie explanations. I could feel like a normal mom again, well as normal as I could ever be. But my normalcy was short-lived and I am still in a funk.
I realize my friend was just trying to be encouraging but she missed the mark. I know people often say the wrong thing in the name of kindness. I have even done that but that isn't very soothing when you are in the midst of an offense.
Words, reality, unknown fears, all of this heavy on my mind instead of just enjoying the feeling of being needed and missed.
Don't worry I do have some perspective, Caleb is my forth child. Soon enough his crying and need for my attention will produce my own anxiety; the everybody just go to bed bedtime anxiety. But for now there is a sweet delight in knowing my baby wants me, NEEDS me. So I work on extending grace to others and embracing our own new family normal. I also work on rejecting fears and negativety. Goodbye funk, no more f words for me.

Mother-daughter book club

2009-09-28T09:24:00.000-07:00

Last night CC and I went to our first mother-daughter book club discussion. We met with four other mom-daughter combos, all girls around ten or eleven, fifth graders. The moms, well once again, I was the youngest but that tends to be the case when you have a baby at 21! We read Ella Enchanted and discussed it. I can't tell you how much fun I had because I have no way to measure it but it was the best! I loved hearing what my daughter thought, I loved the other girl's takes on this character of Ella and all the other players in the novel. I read the book quickly, because CC took so long getting it to me. She tends to read several books at once, I am not sure how she manages to keep them all straight. I enjoyed reading this lighthearted fairytale adolescent book. Then our facilitator sent us discussion questions to mill over before the meeting and I wondered how I missed some of the major themes of the novel like feminism and forgiveness. Nonetheless, I enjoyed our book discussion, especially the speaking points of all the daughters. I am thankful that none of them know of broken hearts and revenge yet. I am thankful that all admired Ella's individuality and trueness to herself.

We are approaching middle school next year and I fret and worry about it. I have the most amazing daughter who strives to be good, is respectful and sorrowful when disobedient, is kind and moral. As she gets older I know she will face pressures and choices, some even more drastic and earlier than I did. I believe she has a good head and a caring heart and a strong moral backbone. I wonder how our relationship will change and when. But I loved last night, the first glimpses of her as CC the preteen in a social setting of girls. She held her own and she also reached out to new friends.

I know that CC looks like me but I have never felt that she was like me. She has always seemed so much better, more generous, more beautiful, more modest, more humble, more outgoing. Last night I saw firsthand someways she takes after me. Her love of reading, her ability to be kind to others, and the way she likes to keep people on track in discussion. It was textbook Christina. Anyone who has ever been in a discussion group with me knows what I am talking about. It was the cutest thing and yeah my sweet, beautiful redhead is a little like me. She inherited something besides my ability to slam a door when mad. Unlike me, she is always quick to admit her wrongdoing and apologize. So she will not be likely to spend most of her preteen years grounded for her attitude. Yeah!

I have many friends out there with daughters and I so recommend a mother-daughter book club. Start one, join one, or just start reading and discussing a book with your daughter.

Our next two books are Utterly Me, Clarice and Rules, if you have a preteen, read along with us! I am also reading with my 8 year old, Nancy Drew books are her favorite right now. She appreciates the one on one time and I love the moments I get to just sit with her curled up next to me.

Happy Reading and Happy Parenting~

Reflections on a Septmember Evening

2009-09-27T13:36:00.000-07:00

Tonight I am thinking of a woman named Takara. I didn't know her well, I actually met her exactly a year ago today. She was a young woman, mid twenties, tall, blonde, beautiful. She was one of Little Man's many private care nurses in the Center Pod of the OSU- NICU. The Center Pod, where the micropreemies are, the pod of the nursery with preemies who were still on assisted breathing. Little Man was almost six weeks old; and on this night last year I watched my husband hold our son for the first time. It was such an incredible moment for us. Watching Crave hold our babies when they were first born is a moment I cherish so much. But with Little Man we didn't get that moment right after birth because both he and I were so very sick and unstable. And Little Man was so tiny, so fragile, so sick that we couldn't hold him for almost six weeks. We couldn't even do the kangaroo care they talk about so much with preemies. On this night last year, God gave us the gift of a beautiful young nurse who was so compassionate and considerate.
I had been in Columbus all week and Crave drove up that Friday afternoon, mom stayed with the girls. He met us at the NICU and we spent all evening in Center Pod with Little Man. Usually they have you leave for shift change for an hour but our nurse knew Crave was just arriving after being gone five days and so she let him stay. She did her hourly checks on our son but she didn't hover or intrude on us. She gave us privacy, so hard to find in the NICU. She didn't disturb us and when she did have to do Little Man's care, she didn't bother us with idle chit chat. She respected our time and our moments with our baby. I had held Little Man when Crave first arrived and the rule was that he could only be held for fifteen minutes once a day at that time, the standard protocol his doctors had decided upon. But that night Takara learned that Crave had not held his son yet and so she made some phone calls to the docs and they agreed that Little Man could be taken out of the incubator once again if he could keep up his oxygen levels and temps. And so I watched my husband, my best friend, hold our son for the first time. He was so very tiny in his daddy's big hand. The tears easily came because I was just so overcome with pride and honor. Crave is the most amazing father and he has always been moved to tears in the first moments of meeting our children, and with Little Man it took my breath away. All we had been through and those scary moments of his birth and the chaos of right after when he was whisked away to be hooked up to a ventilator and all that. Crave went through that fear and chaos alone as he waited for word on me still unstable in surgery. I am so sad that he had to have his heart torn like that, that there wasn't peace when our son was born but emergency actions and no time for the normal bonding. And so this night last year was a beautiful emotional night of bonding. I remember looking in his eyes as he held our son and talked to him and just thanking God that we were both here and both getting to hold our son. That night we each held Little Man for almost a half hour. The doctors came down and talked to us about how he would soon move to the step down nursery and would be weaned off the extra breathing help. He would soon become just a feeder/grower preemie, what they label babies who don't have any health concerns but just gaining weight. We were so hopeful and we stayed very late that night in the NICU.

Takara let us participate fully in his care, which wasn't the case a lot of the time in the Center Pod. The nurses could be territorial and it was a strange place to be in as a mother. The care I am talking about besides medicines and checking his vitals and tube placements is diaper changes and moistening his mouth where the tubes and tape are, things like that. Now I would love for someone to come change his poopy, yucky diapers, back then it was the only thing I could do. But you would have to let the nurse know you wanted to do it. I would leave notes everywhere, please let me change his diaper, please let me wipe his mouth, wipe his eyelids, let me change his tape or his placement. Please please let me do something! Most of Caleb's nurses, especially those at OSU, were wonderful but there were a few who would rather just do it themselves. It was either more convenient, quicker, or sometimes they were just territorial and that was a hard thing to deal with. I hated having to be buzzed in by a security guard and then having to ask his nurse if I could come back to see my son everytime I wanted to see him. Often I would be there all day but not leave to pee, TMI, I know, but I just didn't want to have to go through the security process over. Not because I didn't appreciate the security features it was just jarring to have to go through all that to see your baby. I hated having to call and talk to a stranger to get updates on my son the times I couldn't be with him. I would call and the nurse would either be wonderful or infuriating. Those that gave me his vitals and conditions right away, I loved. Those that said silly things about how cute he was I wanted to verbally abuse. Harsh, I know, what mother doesn't want to hear her baby is cute? The mother who would rather know how many times her son stopped breathing today and if he needed any blood transfusions. So that was my constant battle with nurses, mostly in my own head and heart. The admittance that someone else was taking care of my son when I couldn't, that someone else knew more about him than I did. Also, the constant need to get permission to interact with my son, to be admitted to his pod, to touch him, turn his lights on or off, hold him, change his diaper,it was infuriating and depressing.I should not have to ask permission to see my son! Sometimes when I was finally able to hold Little Man the nurse would ask that I wait until after lunch or whatever and since I needed help with disconnecting his tubes and stuff I was dependant on them. But I learned how to effectively communicate and become an advocate, effectively communicate, what a grown up thing!
I remember a few other nurses from our stay there; some for good reasons, some for their bad attitude, but none stand out as much as Takara. Partly because of the momentous night she was part of, that first beautiful sight of my husband holding his son. Partly because she was striking, beautiful, compassionate and had an unusual name just like my Senny. And partly because the next day our worlds crashed and she was a calming force of information for me.
You see the next morning, Sept. 27 was Crave's birthday. Since we had such a great night with Little Man and it was Crave's birthday we decided to go out to breakfast and visit with our son after the Buckeye game day traffic died down a little. We wanted Little Man to have time to rest because we had stimulated him a lot with our visit the night before and he was still so sensitive to lights, sounds, movement and touch. But early that morning we got a phone call from the transport team from Children's requesting permission to transport our now unstable son to their hospital immediately for a consult with surgeons. We were urged to come quickly to the hospital because our baby was gravely ill. He had internal bleeding they could not pinpoint and other serious issues. We tried to hurry there but traffic was bad. When we arrived we still hadn't received a thorough explanation of what was wrong or what the next step would be. Little Man also had not arrived and wouldn't arrive for another hour but all they would tell us was that he wasn't stable enough to transport. We tried to get info from the new hospital, the nurse's station, the attending at OSU, the resident on call. No one could tell us anything new. So I went out on the green lawn and sat on the ground and prayed and cried. I wanted answers, it was a weekend, everyone had their head in their asses, people were watching the buckeyes in the on call room, I was so frustrated. Then I thought to call the direct nurse line to Center pod at OSU and I asked if Takara was still on. Her shift was over at 7 am but she had stayed hours after, until our son was in the ambulance en route. She told me they had just put him in the ambulance and she told me everything she knew. She told me they had to bag him before they left, that he had needed a platelet transfusion and that they believed his liver was now the problem and she was so detailed and kind. We knew more after my five minute conversation with her than we had all morning.

Little Man was very sick when we were finally reunited. He stopped breathing and turned blue right in front of us. I will never forget it. I used to be an EMT, I don't panic in life or death situations. I have done CPR. But when he stopped breathing I panicked, my world stopped and all I could do was scream for help and then berate them for leaving him alone not hooked up to monitors when he was so sick. And that stared my introduction to the NICU staff at Children's. It didn't get much better but that is ok. We are home now, I can say it is ok now. Little Man is doing quite well. It is hard to believe it has been a year, this week it has all felt very fresh again. I guess some moments in life just stick with you.
But I have also realized that some people stick with you too. And so I am trying to be more mindful of my behaviors and attitudes and words. You never know the impact you are making on someone else. You also don't always know what someone else is walking through at any given moment. We aren't alone in this world, our actions can hinder or help others. Tonight I am thankful for Takara. I am also thankful for all of the staff who took care of my son when I couldn't, those who saved his life, guarded his life, impacted my life and the lives of my family. I am trying to focus on the image of Crave holding his son for the first time and the sights of him now playing with Little Man and the awesome interaction of father and son. They are definately making up for lost bonding time. I am not sure I will ever get the images out of my head of my baby so sick but I am thankful that I now have many more images I can pull out of my memory bank. Those horrible, scary, jarring moments in the NICU are a part of our family's story but I am glad we are moving on. I am trying to hold on to the lessons I learned in the NICU and letting go everything else that holds me back or shatters my peace.
I hope tomorrow we can celebrate Jason's birthday as a family living in hope and IN THE NOW. Because really, Crave isn't getting any younger is he? ha I love you Ja.

2009-09-17T21:13:00.000-07:00

I love Erma Bombeck, I have read her stuf since high school. I remember once when CC was a baby, I checked out every book the library had that was authored by her. I laughed and cried and filed away so many great tips and anectodes. Recently this writing by her came across my path again and although it stings a little it also rings with truth for me. I hope by posting it you get a little more insight into my mother's heart and also find a deeper appreciation for a great writer.

THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, he instructs His angels to make notes in a giant ledger.

"Armstrong, Beth: son. Patron saint, Matthew. Forest, Marjorie: daughter; patron saint Cecilia.

"Rutledge, Carrie: twins. Patron saint....give her Gerard. He's used to profanity.

"Finally, He passes a name to an angel and smiles. "Give her a handicapped child.

"The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be witness to a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice

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I am waiting for the miracle of hearing my son say, "Momma" or "Dadda" or anything. I am waiting for those first steps. I think I go back and forth between shock and disappointment to self-loving and self-loathing. But I can also say I see small things with such a spirit of gratitude and accomplishment nowdays. I am no where close to a patron saint and I havent even fully accepted or adapted to my role as a special needs mom. But I love how the author states "she is doing my work as surely as she is here by my side." I have been trusted with the lives of precious children and I do view it as my life's work. I try to do it well, with humor and grace and love. I definately do not always succeed but I am examining this new word, CAPABLE. I am trying it on, seeing how it feels, making a few adjustments but I think I am going to go with it.

Hold On

2009-09-17T18:01:00.000-07:00

As a wife and a mother of four children, I often feel as though I am saying, "Hold on." Just today I probably said it ten times in the span of a few hours. With homework, dinner prep and clean up, pet duties, and a baby wanting his demands met immediately, that phrase was used repeatedly, sometimes mumbled, sometimes almost shouted; as one child calls out for toilet paper down the hall, the other has a question about her math homework. Next, a dog barking for his piece of dinner as a husband searches for a lost sock needed desperately that evening. Perhaps I should have a t-shirt made with these words but then how would the person on the phone and the person ringing the doorbell hear me? Crazy chaos is my life at times, and that is just in the daily shuffle. My mantra of "Hold on" has helped hold off the chaos or helped to manage it at least. As long as one hears hold on, they know his or her needs will at some point be met and disaster and freak outs are sometimes avoided. I know at times my children and my husband, even the dog and cat, dont want to hear my requests to wait. They dont want their immediate need shelved or not prioritized. And at moments it is hard to determine which person, which need gets answered first. The need for toilet paper? A basic need but it is keeping my four year old confined and sitting still, it can wait a minute. The need to feed the barking dog or answer the perfectionist child on the verge of homework meltdown; the need to find the sock or let the husband remain sockless and perhaps learn to not ball his socks up and throw them under the bed? Which need do you answer first? Yes, some things I guess already have a priority spotlight!

For me though, in the last year of my life, of my mothering and marriage relationship, I have learned an even deeper aspect of "Hold On." My needs were bigger than a roll of toilet paper or a minute's peace to answer the phone. My sweet precious baby son fought to survive and grow. My lovely daughters struggled to cope without parents physically with them. My husband and I had to wait to hold our son, care for our son. We also had to wait to visit him, and wait to hear of his diagnosis and test results. We also had to wait to see if he would respond to medicines. At times, we even had to wait to see if he would live, if he would survive the next minute, the next hour, the night, the weekend. At moments we watched as machines breathed for him, as donated blood flowed into him, as others tried to revive him. In those moments, it seemed as time stood still. The moments when we prayed, "Breathe Caleb, heart beat, platelets produce, stomach please work." In those moments we had to hold on. Hold on and wait as time slowly ticked, as moments became hours and days. And also hold on to more unexplainable yet tangible things. Holding on to the promises of God for a son, holding on to the hope of a God who heals, holding on to a faith that sustains, holding on to a belief in modern day medicine, holding on to the peace that a greater power, a loving creator God is in control. Those lessons were not easy, and sometimes I still chafe at how I had to learn those lessons. But the end result, the outcome for me is a beautiful work in progress. I can say, "Hold on a minute to my children," but I can also say, "Hold on to God." No, I dont think God is going to drop a roll of toilet paper out of the sky. Wouldnt that just scare the cr#* out of you! But I do believe He still provides peace and hope and fortitude and many every day blessings and guidance. So each day I try to hold on to those things. I will let you know if ever the toilet paper drops too!