Like a Snow Globe Turned Upside Down

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

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

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

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

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

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.

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

"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

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

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

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.