I am sorry it has taken me this long to update about Cade’s clinic day. I have been in a real “I hate Duchenne” period of time and didn’t want to sound whiny when writing this post. However, not being sure when this period of time is going to pass and after quite a few tears shed, I decided to just try my best.
For the most part, clinic went really well. There wasn’t anything too major that changed that we hadn’t already noticed. Cade has been having a lot harder time walking and while he still can, for the most part we choose not to make him. So we knew that going in. What I did not count on was how bad it would break my heart to see him not even have to try the stair climb or run because of it.
One new thing that we have added is Cade now has x-ray confirmed scoliosis. So now we have one more specialist to add to our appointment schedule. Luckily, when I called to schedule his orthopedic appointment today, they said since there was not a rush note in his chart I could schedule it for the next time we go out. I’m hoping that will hold that way but if not I will end up scheduling it for November or later as I don’t think my sanity can do it before that.
The thing that probably pushed me the furthest into my funk is that it seems like Cade is at an age and stage of progression that is just cast aside. He wasn’t even diagnosed within the prime age group for clinical trials! We were told that the age group they look at is 4-7 and Cade was diagnosed when he was 9! Don’t get me wrong, I don’t feel like it is any of our providers that feel like this, but overall research and development seem to be focused here.
And that made me want to throw a big fit!!
I wanted to scream and shout that Cade would not just become another Duchenne statistic. I wanted to shout that there is so much we want to do but can’t. I wanted to feel like we have a plan of action rather than a plan of reaction!
So I waited a few days to hopefully calm down before writing this post so that it wouldn’t sound so pitiful!!
While I was waiting, I started preparing for bible study tonight and our book is on the book of Numbers and is titled “Be Counted”. And then I was reminded of where I should worry about Cade not just becoming a statistic. And I was reminded that he and our whole family are loved beyond measure. And I was reminded that we need to focus on his strength and let that take up where Cade’s muscles cannot.
While I am still not quite out of my funk, I am working on changing my perspective and that should help.