u24 took 18 months to diagnose.

I had to carry him the 10 minute walk to school because his legs were too weak.

He'd lay on the sofa after school, no energy to do anything.

He couldn't pick himself up off the floor.

I can't lay it all out, what's happened since those days.

I can't remember if it was the physio or the OT who said it but when we told them the story so far they just gasped and said "Oh, you've been on a journey!"

No-one else has ever expressed so exactly how it felt.
unhinged no wonder we don't see you around here much dad. i cannot imagine the relief of finding some answers after all that time. the suffering of parenthood is something i myself refused to go through. my heart has always been broken as it is.

is otherwise speechless
u24 to be fair I was gone from here long before all these problems began.

relief though, idk. It's been very hard to feel relief at all. I know on paper I should, of course. But I think there's a mix of not daring to and not believing.

At first they thought it was DMD, which has an average life expectancy of 26. So. In theory we should be over the moon but.. I think we're just so hollowed out from the whole experience.
u24 we're getting better though. I'm able to talk, a little, about it. Online. Not in person, really. And he is doing absolutely fine, you wouldn't know there was anything amiss. Running, climbing, jumping, etc. Fully in remission. Cataracts from the steroids though, so we'll see what happens there. 200519
u24 It's so complicated. He's not better, he'll always have JDM, there is no cure. He's symptom free, fully recovered and in full remission. But nobody knows if it'll flare up again. So how am I supposed to feel?

Every time they see him my parents comment on how great it is to see him moving about like he does "I mean when you compare to a year ago" and yes, in private moments I do sometimes allow myself to feel glad. But it's always tinged with the possibility that when he comes off his meds it'll flare up again.

It's the best we could have hoped for in our wildest dreams, but he's not capital-B better, and it's still shit.

I wish they'd understand that.
u24 you're right though, unhinged. There was some relief in at least knowing what was wrong and being able to start treatment. It was a huge step, and there was relief. 200519
unhinged the thought, just the thought, of having a chronically ill child is too much for me u

maybe your parents feel like they should be encouraging?
what's it to you?
who go