Adapt and keep moving forward

Today began with an emergent trip to the doctor with my 3 year old to get an X-ray of his foot. When you live in the special needs world, you become acutely aware of just how fragile life can be and how everything can change at any moment. (Both of my kids have a progressive, degenerative, neuromuscular disorder. Basically, that is a lot of words to say that the genetic disorder we have is very similar to muscular dystrophy.)

Calm and relaxed for his X-ray. And way too cute for his own good.

As we were on our way out yesterday to head for physical therapy (ironic, yes, I know), my son fell. He didn’t trip over anything or anything like that, he just…fell. And he cried.

Now, if you know anything about my wild little 3 year old…you know he’s 100% oblivious to a lot of things. He gleefully lives in his own world and doesn’t really care about anything negative or bothersome…including pain. He will straight up walk into a wall and bust his face and be bleeding, and literally not even notice. Or at least, he doesn’t care. It takes quite a lot for him to actually cry about an injury.

So, when I say that he actually cried after just falling down? Ohhhhh boy. I knew it then that there was something wrong. He told me his foot hurt, but he quickly stopped crying, so I thought maybe we dodged a bullet. After that, we got in the car and headed to PT. I’m glad it happened that way because ultimately, she offered a perspective on the situation that I never would have thought of.

She was worried about the injury. Where I thought “he fell, and hurt his foot”, she didn’t agree. She thought it was more like “his foot hurt, and because his foot hurt, he fell down”. During the 2 hours that we were there (both my kids had PT yesterday), my son started to get a ridiculously severe inflammatory response all over his body. He had large patches on both arms that were bright red and radiating heat.
That, along with his seemingly random foot injury sent up some big red flags.

His arm is red and swollen from inflammatory response to something. PT marked the spot to see if the size changed over time.

We still don’t know what’s wrong, but my son hasn’t walked in 2 days now and is in a lot of pain. He doesn’t have the upper body strength to crawl, so he mostly just sits in one place now. It’s hard not knowing why, or what caused it, or if I can even fix it. They are thinking he might have some sort of virus or infection that is attacking his joint, but we just don’t know yet.

I hate seeing my son suffer.

But here’s the thing…he isn’t suffering.
Sure, he can’t walk anymore and is in pain…but he has immediately adapted and continues to move on, and has remained as happy as he always was.

He sets his toys up all around him so he doesn’t have to move. He asks for help when he needs it. He’s not crying or complaining or frustrated.

He asked his brother to move his toys under the kitchen table (aka his “house”) so he could play without having to move

His world and his physical abilities are drastically different than it was just a few days ago. But it simply does not phase him.

This is how he gets around now, either walking on his knees, or crawling when he can.

That boy teaches me so much, and I’m so proud of him. He just accepts his world for what it is and always makes the best of it. No matter what.

He adjusts the world around him that he can control to better meet his needs. I think thats a lesson that all of us need to learn.

Sometimes things change, maybe even drastically or dramatically. But we can’t control that. All we can do is adapt, and keep going. So, for today, that’s what I’m going to do.

Adapt, and keep moving forward. My boys need me to fight for them…and I always will.

2 thoughts on “Adapt and keep moving forward”

Leave a Reply

%d bloggers like this: