Sammie B was a fabulous little patient, as she always is. The neurologist was super impressed by her tone and strength and how far she's come, but . . . something is still holding her back. Something is still keeping her from walking and standing independently. And, now that she's so much stronger and TRYING to move more (and in fact, as demonstrated by the crazy dance parties at our house lately, she IS moving more, just not so much moving to get places), her "quirky" (for lack of a better word) or "irregular" movements are more apparent. I had worried that this meant she had something that was getting worse (the words that have kept me paralyzed with fear along this journey, words that occasionally pop up in my google searches in the middle of the night when I've been trying to find "it" on my own -- "fatal" or "progressive" or "degenerative") but the neurologist said that's NOT what's going on. Nothing is getting "worse," it's just that as Sam gets stronger and is doing more, we can see new symptoms. Whatever "it" is is evolving, not getting worse. We are seeing more of the "quirky" movements as she's trying to use her muscles to do more (and that alone, the trying to do more, is a good thing, to be sure). AND, the eye movements are likely part of the larger movement disorder.
We have a few things we are going to test for but are waiting until after we see the movement disorder specialist so that we can try to minimize pokes and prods on our sweet girl. The good news is that much of what we are testing for, while not "treatable" or "curable," are very much "manageable," (including with some ridiculously specialized diets) and if any of the tests were positive, that knowledge would help us help her. The neurologist seemed confident that whatever "it" is is nothing fatal, nothing progressive, nothing that will keep our girl from living a long, rich life.
I felt encouraged and optimistic walking out of the appointment and as I recapped it for B, then as everything swam in my head, I couldn't help but fall into the "why her?" thinking. I mean, some of these things we are testing for (I lost my battle with myself and googled) are rare. Like 300 people in the WORLD with these disorders. Really? WHY HER? [Though it is believed they are actually more common than that, but that many people with these things have been incorrectly diagnosed as having cerebral palsy, which could be the case with Sammie B].
Anyway, not a negative appointment at all. Not at all. Nothing we didn't already know. I think part of it is that Sam has these sort of "quirky" movements and all along I've thought it was "something," but tried to tell myself it was the low-tone or just her balance, or whatever, and after talking to the neurologist, I know it isn't just low-tone, it is "something," though that "something" doesn't have to be horrible and scary. It's just another clue to whatever "it" is and "it" has been there all along (B said he felt like we were just getting closer and closer to an answer and that that answer will ultimately allow us to help her, and I know that's totally true). But, I'm still just feeling a tad sad and a whole lot of "why her?" I think part of me was still sort of holding onto someday Sam "catching up," not because life is a race or because we need her to be "typical" (we don't, we just want her to be her best self), but because I'd love nothing more than for her to not have to struggle so hard physically, and well, as we move into more testing and discuss these other lifelong "movement disorders," I'm coming to terms with the fact that Sammie B is likely to have a lifelong disability. And, that hurts. So, so much.
Apologies for being vague on WHAT we are testing for, but if I'm going to continue to hold strong and staying off google, I can't have family and friends googling themselves crazy, if that makes sense. And, as I reminded myself umpteen times today, there's no sense googling something that she *may* have. I'd really really come to terms with and accepted and found peace with a cerebral palsy diagnosis, so now, to go back to looking for a more specific cause is just well, more than a little hard. I feel myself sliding into a darkness, and I literally fought the urge not to google myself into a frenzy all day (and that will be particularly hard moving forward now that I'm back at a computer all day!) but I'm determined not to let it overtake me. Not to let the worries of tomorrow (or 15 years from now) rob me of the joys of today. I just won't. And I KNOW that quality of movement will NOT determine her quality of life. It just won't. There's too much else to her and to life than that.
I'm sad to see the little reprieve from testing we've had come to an end, but really, B and I know that these tests are not just for testing's sake, but for information that could help her. In this situation, as much as it will stink to put her through additional testing, knowledge is power. And that is what has gotten me through these last few days whenever I've gone to the "I don't wanna" thinking . . . Knowledge is power, and if there's some piece of knowledge out there that could help us empower and enable her, we have to find it.
Now, many of you know that I'm not religious. I like to believe there's something greater than me in control (I need to believe that) so I have a spiritual side, but not particularly religious. BUT, probably for the last year, every night, I've said the same prayer. Because I was worried and felt guilty for taking the break in testing that we took. Every night, I prayed that IF there was something we were missing, something that we could make worse by ignorance or something we could make better if only we knew, that we'd know. That something would happen to lead us back to testing. And, well, a mom on one of my boards posted something about her daughter that just smacked me in the face. Something about her daughter's eye movements that sounded just like Sam and . . . her daughter's diagnosis was something I'd considered long ago, but a doctor had dismissed. So, I knew. I knew that it was time to go back to the neurologist, and we did. Then we saw this documentary with the movement disorder specialist, and well, whether it is divine intervention or not, I don't know, but things are, I believe, unfolding as they need to. Even if it is all a bit scary. Even if it breaks my heart to have to put my girl through MORE tests.
Knowledge is power. And the knowledge we are looking for now is knowledge that will help us enable and empower her.
And, as the neurologist reminded me, no matter what "it" is . . . Sam has her own trajectory.
The sky is the limit. And we will do anything and everything we can to help her reach her potential. To accomplish everything she was put on this earth to do. To help her reveal her destiny, as only she can.
Sammie B's face of determination as she climbs the stairs to the ball pit at therapy. That face gets me through the darkest moments of this journey.
"Strength does not come from physical capacity, it comes from an indomitable will." - Mahatma Gandhi
“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”
- Shel Silverstein