Yesterday, we went to a museum (we had to get out), and the walking got to be too much for Dax (which is to be expected). There was the nicest employee that offered to go get us a wheelchair from the 1st floor. It is so awesome when people go out of their way to be helpful and kind. I graciously thanked her. I told her that having a chronically ill child is tiring. I think she could see it in my eyes. When someone makes a gesture as she did, it helps get us through. It gives us hope and something positive to reflect on. It really does mean more than what most people can understand. It means that there are genuinely nice people out there that care and want to be helpful. The small acts of kindness that people (usually I don’t even know) have shown us during all of this has been absolutely incredible.
I’ll never forget one horrid appointment at a huge Dallas hospital. I was exhausted. Dax was traumatized from a zillion blood draws (back when they were testing for everything under the sun, in search for a diagnosis). I didn’t have a wheelchair. He was being aggressive because he was DONE. He was about 5 years old and having what I call a moment (chronically ill kids have those when they have had enough. Watch out!). I had him on one hip, flailing and mad. I had a large purse, a huge medical folder full of his files and cds and such. The specialist had been kind enough to offer me a huge bag of samples since one of his meds was $325/mo that insurance wouldn’t cover. So, I was carrying all of that and a piece of nebulizer equiptment.
I’ll be darn’d if I didn’t drop my keys. I literally was almost in tears and just stood there. It was just that one tiny thing that was about to push me over a ledge. The nicest lady came up, picked up my keys, looked me dead in the eyes, and she said, “You’re a wonderful mother. You hang in there.” There was a softness in her. She patted me on the back, half-hugged me, smiled and continued on her way. She will never know how much that helped me gather myself and walk across the huge children’s hospital parking garage to my car. (Thank goodness I can now park in handicap and use a wheelchair for him when he can’t walk!).
People like that who take a few seconds or minutes or whatever-it-is out of their day to do something so nice truly make this world a better place!!
Today, Dax went to his orthotics appointment and got his custom ankle orthotic inserts. Oh my gosh, the difference. He said it felt like camel humps under his feet, but it didn’t hurt him or make him sore. So, we now call them his humps.
Sometimes, holding the feet where they were supposed to be residing can make a kiddo sore at first. We are taking it slowly. He walked around Target, and his ankles looked great. Sometimes, you really see how bad something is after you see what it should look like.
I think it is ridiculous that insurance won’t cover them. Look at his stance on the left compared to the right. It’s a big difference, and it is much worse when he runs and plays. He ankles just fold. The custom orthotics, taken by a mold of his feet and formed by a specialist, are over $100 a pop (and kids grow), but they’ll hopefully prevent him from having a complicated surgery or even more problems with mobility later.
I find it confusing that insurance will pay for a very expensive surgery once the damage is permanently done but not for the prevention of it. It is what it is. They’re worth it… My poor pocketbook.
The specialist was very direct and made sure I knew this wouldn’t solve all his lower leg pain or leg pain in general. Of course, I already knew that, but I always have utmost respect for professionals who tell it like it is. There’s a lot to Ehlers-Danlos that we just have to accept. It’s great that some professionals acknowledge that, as well.
Anyway, we celebrated by an impromptu Target trip and a gem dig kit for the boys for $3/ea (Score!)