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.

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.  

stuck

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

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

2010

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

coffee=clarity?

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

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


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

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


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

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


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


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


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


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