Knowledge is power. This is something I definitely believe. Knowledge has the power to change your entire life. This can be in a good way, or in a bad way.
This whole "what's going on with Cadence" thing has been a source of confusion and frustration for me for a long time. Yes he was big when he was born, but not record setting and he came by it honestly. And jaundice is common in newborns. He didn't move super early, but he had a lot to move.
It was always, "Gosh, he's not doing this" or "He's doing this differently" But I could never tell for sure if this thing, this symptom or characteristic, was something all on it's own, and he happened to have a few of them, or were they all related.
This was something I thought a lot about. It didn't keep me up at night, but it never went away. It wasn't until we realized he was having seizures did it really kick in that this could be "something". I didn't know what, but we had to look.
So began the long list of doctors appointments and possible diagnoses. We've heard that he's everything from a late bloomer to autistic. We certainly got some clarification on some parts of his diagnosis (he does have low muscle tone, he does have seizures) but no all encompassing diagnosis, and some things we heard just were not accurate (he is not autistic).
We've had a lot of tests done, seen a lot of doctors, and been told a lot of things he doesn't have, but nobody could tell us what he had, or even if he had "something". So there came a time when I accepted, on a very conscious level, that Cadence was just Cadence. Quirky, clutzy, goofy, and all together perfect in his own special way. And maybe 20 years from now I'd hear of some new discovery and finally figure out that that was what Cadence had. It got to the point where I was really struggling with why I even wanted to find an answer. So I let it go.
After Connor's diagnosis, I did some research on some of the syndromes that can be associated with his condition. I knew that if cranio is related to a syndrome, there can be more issues. I didn't really suspect he had any kind of syndrome, but had to look it up just to be sure. That is when I came upon Sotos Syndrome. I think it came up just because it also involves a big head, but as I read the description I couldn't believe how many of the characteristics of it sounded just like Cadence. It involves overgrowth in childhood, low muscle tone, speech and development delays, poor coordination, seizures, and the list goes on and on. I really could not believe it all. I may have finally answered all of my questions. You would think I would be ecstatic. And a part of me was. But a part of me was terrified.
I had already begun to question why I even was looking for something. I started to feel like I was trying to find a label for him, and something about that just felt weird and not right. But I was also filled with so many burning questions, that I couldn't let it go. But when there was a possible name for it, it suddenly seemed so scary and like I wish I hadn't even asked the question.
I'm feeling a bit like this tonight. I found a group for families with sotos - something that was hard to do with a kid with no real diagnosis. It was great for a minute - finally somewhere where I could maybe find people who were going through the same thing as us. Somewhere I can find other moms who have the same questions and challenges that I have. But then it really broke my heart. This would mean that Cadence really does have something. He's not just quirky or uncoordinated, he has something. It has a name, it won't go away, it could cause more problems. Why did I even ask.
I know this will pass. Having a name for some condition doesn't change who Cadence is. He's still the goofiest, sweetest boy I know. Knowledge really is power and having this information, if it turns out this is what is going on, really will benefit us in the end. But right now, I just wish I were a little less knowledgable.
