Winning Ugly

I’ll admit Dear Son’s inability to process his food a few weeks back threw me for a loop. I know it shouldn’t, I mean, it’s not like he’s been eating or anything. It was just the realization of another milestone in his downward spiral was achieved, if you call it that. Kind of like walking downhill and then slipping on the ice and nearly falling. You get hurt trying to stop the fall and then you realize what could have happened.

It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.

I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.

This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.

But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.

It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.

I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.

In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.