The new braces arrived today. The plastic molded hand splints, were designed to hold Dear Son’s hands straight, as if this molded plastic would be enough to keep the ravages of his disease at bay. If that were true, I’d gladly put him in plastic from head to toe, but that wouldn’t be much of a life, now would it?
We have these outdated notions at times, in the medical community, of what these kids need. Now certainly, splints to keep his hands from getting worse and avoiding surgery is a good thing, but somehow, deep down, they don’t really delay the inevitable. If anything, maybe, it makes it more palatable, but then one might ask, “to whom”? To Dear Son, I think not. Plastic forearms to prevent his fingers from exploring life and putting those fingers in the flour while making the dog biscuits would not be a good thing. Oh, how he loves that. His eyes just light up when his teacher “tosses” the flour on his tray. You can see his spirit come alive in his eyes.
It’s ironic too, the emblem I chose for the splints. A football logo to celebrate the boy in him and yet, if the truth be told, he can barely sit, let alone walk. Walking and standing disappeared years ago. And what about being tackled like a football player? We’ll, he’d break. And yet, that is what I chose. But what else, would you put there? A wheelchair logo would seem silly, as if I was advertising his disability. A cat or a dog? Too childish. A color for the plastic, well, then, it wouldn’t match his clothing or his wheelchair. At least with the logo, it would invite conversation, something Dear Son loves.
Photo of Dear Son's former AFO's.
While other people have baby shoes as a reminder of their baby’s first steps, I have AFO’s, or plastic foot braces and now plastic hand braces. The foot braces, that I once viewed as ugly necessities and were a pain to put on every day, are now beautiful reminders of his gorgeous little legs and the days he could walk. Days when my life and his, were full of possibilities, that one day, he might walk. Walking in his gait trainer, and even running in it, was something he loved to do. He wanted to walk more than anything. He was so proud.
But now, the braces sit in his memory box. I kept a few of them and got rid of the others, while secretly wanting to keep them all. I mean, he got a new pair every year as his foot and legs grew, however the braces were a wonderful reminder of him growing up. I imagined placing them on a shelf someday, from smallest to largest, but somehow, it didn’t seem right.
Photo of Dear Son as a baby.It’s funny sometimes, to hear mothers talk. They talk to their kids about what it was like when they were babies or when they were little. They tell them stories of the first time they walked or other charming things they did. And as a special needs mother, or rather, mother of a special needs child, I have been blessed with a different memory…one of a child who more than anything was determined to walk and who more than anything wanted to walk and run like the other boys and to show them too, that he could run like them, well, sort of. He’d run in his gait trainer with his leg braces on, his stick legs seeming barely adequate to hold him up. And yet, the boys weren’t impressed. No, they didn’t even look at him. But he was so proud.
Photo of Dear Son, age 8, in his gait trainer, a device to help him learn to walk.
And now, the hand splints, molded pieces of plastic with the same logo, are a reminder of those leg braces. The leg braces, were had in a time of “possibilities”. I had the hope that one day, Dear Son might walk on his own. And now, those days are behind us. The beautiful memories of him walking and running in his gait trainer, are never to be discussed with Dear Son. How, as a mother, can I tell him how much I loved his spirit when he could walk, when he can no longer walk, no longer stand and can barely sit up. Who do I tell that to? Somehow, a twitter, just wouldn’t be enough.
Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and seizures, caused by a random mutation of the ARX gene.
I wanted to share some pictures of Dear Son. We went to the opthalmologist a little over a week ago for a follow up visit and some lab work. We were at Big Academic Medical Center for several hours. During that time, I couldn't help but notice how different he is versus a few years ago. He was happy, holding his head up, sitting up straight in his wheelchair and looking around. He had a grand time watching everyone. By the time I realized how good he looked, I tried taking some pictures with my camera phone but by then, his eyes were dilated and they weren't as good. Since I've been blogging for six years and taking so many photos of him, I can't help but notice how different he looks now that he is well. The real food blenderized diet is working so well. He just looks better. It's as if a veil has been lifted and now that all of the sickness is gone, he can just be himself. 
I took these photos at 7 a.m., right before he went down on the bus. I asked him to smile and he was all smiles for the camera. His one on one aide at school said he smiles from the minute he gets there until the moment he comes home.
You can see he still has some strabimus however we won't be during surgery for that any time soon. He had strabimus on his one eye when he was ten or so however since he's a high surgical risk, we won't be doing the other eye any time soon.
We met with the nutritionist last week that specializes in blenderized diets. Nothing really new; it appears I have been doing a stellar job. His calories, water and his weight are all appropriate for his height. She had some minor tweaks that I'll incorporate but overall, things are going well. 
Have a wonderful weekend.
