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.