After over three years of medical tests, and nothing but "normal" results, hearing that there is, indeed, something structurally abnormal about our daughter's brain has got to be the some of the hardest pieces of news I've ever received.
Sammie B's cerebellum - the part of the brain that controls movement, coordination, and balance - is on the smaller side, and not growing as fast as other parts of her brain. That's the hard part to hear. The words that literally made the blood rush from my face today, my stomach get queazy, and the tears immediately start pouring down my cheeks. I think B and I both fully expected "normal" results from this MRI, so this one knocked us over (me more than him, he is a model of strength in these moments, no doubt; I'm a model of a puddle on the floor!).
The better news is that our neurologist said the images and these results don't change his optimistic view of her future. We knew this was likely something with her cerebellum because it is her motor development that is affected. Her balance. Her coordination. Her movement. The images didn't surprise him.
He believes she'll only continue to progress, as she always has. That with practice and hard work and all the things that she does anyway, she'll progress. Things will get easier for her. That she will live a long, bright future.
Progressive, denenerative and fatal are the three words along this journey that truly, truly have the power to knock me to my knees -- words that I can hardly speak out loud when it comes to my child (words that no mother should ever have to worry about in relation to her child) -- and today on the phone, the neurologist said he was confident that none of those apply to whatever is going on with Samime B.
We have some follow-up blood work to do to rule out some things, but again, the neurologist said he fully expects those tests to come back negative. We already had some blood work done while she was having the MRI and so far, the ones that have come back have been negative . . . We'll have more blood draws in the coming weeks and awaiting the results of everything is sure to cause me some restless nights and fleeting moments of panic, but I know I have to figure out a way to keep the worry from paralyzing me. From letting it stop me from enjoying the right now.
I have to figure out a way to keep the worries of tomorrow from robbing me of the joys of today, and there are so, so many joys in our every day.
So, we take this news, and we keep moving forward. Inspired by her. Knowing that only she can reveal her destiny to us. Knowing that the sky is the limit. Knowing that no test, no MRI image, can tell us what she will or won't do.
We know so much now about the idea of neuroplasticity. We know that when one part of the brain is deficient (a dumb word in my book, at least when referring to party of my girl's body) in some way, that other parts of the brain can be "re-wired" to take over the functions of that other part of the brain. We know that people can be born without cerebellums and live long, healthy, full lives. And after all this next round of testing is finished, we'll meet back with the neurologist/movement disorder specialist and we'll talk about how these findings can help us help her, and I truly, truly believe that knowledge is power. Even if, at first, the knowledge knocks us over. It is what we do with it that counts, right?
We keep on keeping on, inspired by her smile, her grace, her determination, her perserverance. Her.