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the thing with having a disabled child is that you never run out of things that you can worry about.
every time you think you have covered every single base, some doctor points out something else that you'd never even considered might be an issue, might need "fixing". if you've ever had a baby, you know what those first few weeks are like, when you worry about everything. are you holding the baby okay, is his head supported, is he breathing, is he sleeping okay, is he getting enough food? and while I don't doubt that it doesn't ever go away for parents of non-disabled children, it's just so different when your child is disabled.
when I was 20 weeks pregnant and having the anatomy scan, I thought, you know, what if my kid's heart isn't healthy? what if there's a problem with his spine or his brain or his liver? I never thought that some doctor would bring up a concern about my child's fucking ankles mobility when he was 3 years old, it never ever crossed my mind that I should be concerned about how goddamn mobile his ankles were. because why would it? as a parent you just want your child to be happy and healthy, you don't think about all the nuances of different levels of health there are that you could be concerned about. as a non disabled individual, I take the functioning of my body for granted in so many ways. I take the fact that I can see and breathe and write without thinking about it, that my body works in the right way as far as my strength goes, I take all these things for granted because why would I not? it's just the way things are for pretty much everyone.
until it's your kid, and it's not that way for him. and there's a never ending level of exhaustion behind what you can worry about, or have failed to consider until someone thrusts it into your consciousness. I do not spend time wishing that my son did not have a very rare form of muscular myopathy which will affect him, and me too, for the rest of our lives. it is pointless and futile and does not do anyone any benefit.
my son is happy and healthy, he's just healthy in a different way to the one I thought he would be.
wishing things had happened differently would mean that he was different, and I wouldn't change him for anything. my mother asked at the hospital yesterday if the doctor thought there would be a "cure" at some point in the not too distant future. that baffled me, it wasn't even something I had considered. this is the way things are and it's up to us to make the best of them, to do what we can with what we have. teddy has a scoliotic curve to his spine. I am not thinking about what the doctors can do to "fix" that, I'm thinking about how we can manage his life so he keeps getting stronger, so he keeps getting better and can adapt himself to this world around him. sure, if someone offered us some fully tested, fully safe medical procedure that meant all of a sudden teddy's muscles worked properly, his bones were all in the right place doing the right stuff, his heart didn't have that little flickering concern in it, his lungs were exactly the strength that they should be, if someone offered that then of course that would be incredible. but I'm not going to waste my time, and teddy's time, waiting for that. because it's pointless, and is only going to leave teddy feeling like there's something lacking in him, like he's not good enough exactly as he is. of course he's good enough, he's wonderful and perfect. do not tell me you are "sorry" when I tell you that my son is disabled. my kid is fucking incredible. there is nothing to be sorry for.