His days are shorter now. He falls asleep pretty much right after he gets off the school bus. I try to sit with him outside on the drive for a few minutes, on really nice days, to talk about what he did at school that day, but many times he falls asleep right there. If that weren’t enough, they tell me he has started taking more naps at school.
I take him inside and put him in the recliner in the living room, trying to avoid the inevitable. At least he’s not in his bed, I tell myself. Sitting up will be good for him. Within five minutes, however, he is fast asleep. I move the wheelchair past his rocker that sits at the table, the one he used to sit in after school just last year. It sits at the table, as a dull reminder of the good old days, never to be used again. But somehow, I can’t bring myself to put it away. That would be too final. I pass the rocker on my way to the recliner, taking a blanket to cover him up while raising the footrest up to make him more comfortable. He sleeps until 5 p.m.
I am concerned a bit, by the disease progression. By now, it’s not a surprise. It’s as if he’s in the check out line of life. As Dear Son stands in line, in his wheelchair, I keep grabbing his hand, trying to bring him back into the store. It’s as if, I keep pulling his hand, trying to get him to look over at me while telling him, “Remember this, as I grab a toy he might like…or remember when you used to like this…and then I would tell him something that he used to do, when he was a little boy.” I’d then get desperate and grab at just about anything, hoping to make him laugh, like he used to. All the while, it would be getting harder and harder to get him back into the store. The line would move forward, with the check out getting nearer and yet, I’d go around the store, trying to get Dear Son’s attention, to pull him back out of the line. In the early days, it was easy to distract him, when he was further out in line, but now, as he moves towards the front, he no longer wants to get out of that check out line, nor does he want to look back.
It’s hard too, just getting him to smile. Part of it, is maturity. They don’t laugh at seventeen as easily as they do when they are ten. And part of it, is that he’s just plain tired. I can see that it takes all of his energy, just to get through the day. Those days are short now. He sleeps from the time he gets home from school at 3:15 p.m. until the next day. He might wake up for five minutes around 5:30 or 6 p.m., just enough for me to start his supper through the feeding tube, then he’s back to sleep until the next meds are due around midnight. He’ll wake briefly, I’ll change his diaper, then he falls back to sleep. The only other time I hear him, is if he cries out from a seizure or chokes on his saliva. If that weren’t enough, he’s started to take naps at school. These aren’t medication related anymore, it’s just that he’s moving up, in the checkout line of life.
For that reason, everything is riding on the “Make a Wish” trip. Someone asked in the comments section the other day, how it was going, and that they wanted details. And for now, I don’t have them. We should be getting our itinerary any day now, and when we do, I’ll share it with you. But more than anything, I need Dear Son to enjoy this trip. I want to see him laugh, as in really big belly laughs. I want to see him smile. I want the days to be so much fun that he doesn’t want to sleep all day. I need that for me, as much as for him. I need and want to be able to look back and remember that smile, the one that would light up a room. I need to remember the belly laughs and how his head would fall forward from the belly laugh, because he couldn’t laugh and hold his head up at the same time. I want to remember the pretty girls, the ones he stares at and tries to get their attention. I want to remember the sun on his face, as I hold him in the pool, him with his eyes closed, in a deep state of relaxation in the swimming pool, like he loves to do. I want to remember all of that. I want it to be the best. The Make a Wish trip is like the giant blue light special in the store of life, where I pull Dear Son out of that check out line, and bring him back into our world, even if it’s for just a little while. And the 18th birthday, well, it will be the time of his life, or so I hope.
But today, I’ve watched him sleep in the chair. I’ve moved him into the bedroom and tucked him into his bed. I’ve changed his diapers, fed him, gave him his medications, hugged him and kissed the stubble on his cheek. I gave him everything I have, because I love him and so I won’t have any regrets. But somehow it’s not enough. I need to pull him back, pull him back into our world for a little while longer, so I can hear his laughter for a little while longer. But tonight, it’s not going to happen. No tonight, I just hear the rain.
Note: Dear Son has a progressive neurological disease and suffers from seizures, dystonia and severe mental retardation due to a random mutation of the ARX gene.