I remember the first time Dear Son took a walk without any assistance in the gait trainer in elementary school. He had been working on that for some time in physical therapy, however this would be the first time they would show me that he could operate the gait trainer on his own, without anyone physically touching or guiding the gait trainer. I remember how happy he was, to navigate the gait trainer a few steps in the hall of the school and how odd it was that he didn’t need me at all. He didn’t need me to hold on to the gait trainer, to steady the gait trainer or anything like that. I remember being pretty excited on the one hand and on the other, not really knowing what to do with myself. I didn’t know what to do with my hands. Usually, I would have to help him with everything and well, he just didn’t need my help. It was such an odd feeling and a good feeling at the same time. After all, it wasn’t very often that there was anything Dear Son could do on his own, without my assistance. He couldn’t stand on his own, eat, use his hands or roll over and yet, here he was taking a few steps on his own, in the gait trainer. I remember the big thing at that time, was wondering if he was going to walk or hoping that he would someday walk on his own.
I think back to those times now and find myself wanting more. I guess maybe wanting more isn’t a good way to put it, but rather, I don’t want anything less.
I remember a few years back when he lost his ability to weight bear. Then he lost his ability to roll over. Then he lost his ability to eat. And then, he lost his ability to go on long walks with me because he couldn’t keep his head up very well. We used to take long walks around the golf course where we live and we’d stop briefly at the beginning of the walk and swing a bit on the double swing overlooking the water and then again at the end of our walk. At some point, he got too heavy for me to lift into the swing and I wondered what we’d do. Fortunately, I found that he was just as happy sitting in the rocker at home after our walk.
Soon, we moved inside and he liked to sit in his rocker and look out the window after school. As he began to weaken, he’d begin to fall over to his right side and nearly tumble out of the rocker. He has no use of his hands or arms so it’s not like he can catch himself or anything like that, so he really needs to be watched carefully. Soon, it was no longer safe to let him sit there and look out the window. When he could no longer do that, I moved the rocker over near the dining room table, where he’d sit and listen to the country music on his iPOD with his head lying on the table. When he’d get tired, I’d take the hoyer lift and take him into his bedroom. But some days, he’s not even able to do that. Today, he tried to lie his head on the table, but he couldn’t sustain it. After a few attempts, I took the hoyer lift and moved him into his hospital bed, where he could lie down and listen to his music. He was asleep in less than five seconds.
Sometimes in life, we want too much and we find out that less is more. And sometimes, less is well, just less. I feel like I am stuck in a long goodbye and I don’t like it. I want more. A lot more.
Note: Dear Son is sixteen and suffers from a progressive neurological disorder and intractable seizures due to a random mutation of the ARX gene.