Most the people that wander by, are probably doing so to read about Donovan. So, I thought it might be a good idea to update y’all as to what he’s been up to for the last year. I started writing a bunch of updates, but it’s getting way too long, so I think I’ll just divide them up over the next week or so.
First, a picture! This is Donovan on Christmas day practicing on his new tricycle!
First, let’s talk about gross motor skills. Even though this is usually the most challenging area for a child with Spina Bifida, he’s doing amazing! He continues to be our little miracle baby. He’s a full-time independent walker. Delayed in some areas, but very mobile.
He can run and walk and is learning to ride a tricycle! He’s not able to jump or climb stairs without support.
His new physical therapist here decided he would benefit from some braces, so he has a pair of SMOs. They are tiny little braces that go up to just above his ankle. He tends to walk on the insides of his feet, so they are meant to correct that while he’s developing an ankle strategy (which is apparently something you do between age 2 and 4).
About a month ago, his PT let us know she was discharging him because she didn’t see a need to continue right now. Max was super stoked. I guess it is a positive thing. My only thought was, “But there’s still things he can’t do!” Then my husband had to remind me there may be some things he can never do, or things that he wont be able to do until he can understand the ergonomics of it all. Ohhhhhhh yeah. Forgot about that!
Clearly, he’s probably on the “above average” side of gross motor skills for a child with Spina Bifida. We feel so blessed because of this, but we don’t take a single thing for granted. I know that every step and milestone is its own little miracle. I also know it can all be taken away in the future.
I also know that no mater how above average he may be, there’s always going to be things he can’t do. I’m totally fine with this. I’m just so proud of him as a little person, it honestly doesn’t matter to me. But, my heart hurts a little for him. He’s already asking if he can play football like his older cousins. We’ve really hyped up the appeal of being the water boy. He’s excited about it now, but I know when he’s older he’s going to want to do things that he just can’t do. Even if he were physically capable (which he very well may be), he will not be medically cleared to play any sort of contact sport because of his shunt and hydrocephalus. So, my goal over the next couple of hears is to start focusing his attentions towards things he can do and excel at – things like swimming and music just being a happy kid.
I think the bottom line is that no matter what your child’s challenge, you’re going to hurt for them for the things they want to do but can’t. I need to remember that every child has challenges, and their strengths are what needs to be the focus. I don’t want him to grow up focusing on what he can’t do, so I need to put him in the best position to excel at what he can and wants do.