Wednesday, November 07, 2007

The Birthdays

We passed the high school kids as we walked along the walking trail, Dear Son and I. The high school kids, were standing on the second story porch, facing the golf course and walking trail. The homes are large. The porches are larger yet and offset their impeccably manicured yards. We saw the kids talking and horsing around, as one of them was obviously having a party of some kind. Kids Dear Son’s age, always get his attention. He stares at them when we pass by and sometimes he’ll yell out in what I think is an attempt to get their attention. They ignore him mostly, because he’s not one of them. Once in a while, someone on the trail might say “hi” to him, but most just pass him by as if he were invisible.

We were now heading home and passing them for a second time when they all gathered around one of the teenagers. They began singing, “Happy Birthday” when we stopped to listen. I turned Dear Son’s wheelchair around to face the kids while they sang. We were far enough away that it wasn’t a distraction in any way and besides that, we were just looking. I told him his birthday was coming up soon and it wouldn’t be long until the kids at school would be singing Happy Birthday to him. The song ended and we turned around and headed home.

The birthdays are different now. With every passing year, I become more thankful that they have arrived, more thankful that we somehow “beat the system” and got to spend more time with Dear Son. The birthdays, have gone from rites of passage, to more of, remembering all of the things he has been through and thankful that he has come out alive for now. It’s the kind of thinking that you have let’s say when your parents are older and they have had a long illness. You want to keep them around and you aren’t quite sure how many more years you will have with them.

But this should not be what you are thinking when they are turning sixteen. This was supposed to be the “big” birthday when they get their license and start driving. When you hold your breath and give them control of the car while you ride along as a passenger. As parents, I always knew who would be teaching Dear Son to drive. We never talked about it, but I knew it would be Dad. He is a Type B personality with a very calm demeanor; he’s a good driver so he would be a good choice to teach Dear Son. He has a way to make it not only pleasant but fun. Instead, the only change that happened this year is that we let Dear Son ride in the front seat of the car, because it’s easier to get him in there.

Imagine that, he’s almost sixteen and he can now ride in the front seat. He came home with his father from a weekend visit and I saw them turning into the driveway of our home and I didn’t recognize Dear Son at first because he was sitting in the front seat. It was as if it was something that was incomprehensible.

We also no longer wonder when or if he’s going to walk. That used to be the big thing. We’d wonder if he’d ever get to the point where he wouldn’t need the gait trainer any more and walk on his own. We got to the first part, a few years back. He never really was able to walk on his own. One year, he was able to walk when I held his arm tightly for support but other than that, that’s the best he ever did. For many years, we’d be looking forward, wondering what he’d be doing when he turned a certain age. Now we look back.

Other changes are remembering his laughter when he’s not home. This is the type of thing that you do when someone dies. You remember them and the things they enjoyed. You remember their essence. I think about that now when I remember things that make him laugh. When he’s at his Dad’s for the weekend, I’ll make my bed and the cat will come up on the bed and play in the sheets. Dear Son always laughs when this happens because he thinks the cat will get into trouble. The cat doesn’t get in trouble at all; instead he plays a bit, then flys out from the blankets and leaps off the bed and runs into the other room. Dear Son laughs when he does that. I think about him smiling and it bothers me that I even think about that. It’s like he’s already gone.

And then there is the loneliness. I really hate it when he spends the weekend at his Dad’s. Yes, it’s great getting to sleep the whole night through. It’s great being able to go out with my friends and have fun. It’s great being able to leave the house after four in the afternoon, since I don’t have to take him in the car and load the wheelchair in the trunk. But it’s not so great when I come home late at night. It’s just too quiet. I distinctly remember this feeling when I was a teenager myself. My father died of a massive heart attack when I was thirteen. My mother resumed dating a year or so after that and I’d come home often to an empty house. I hated that feeling of an empty house. I am reminded of that when I look at Dear Son’s bed and there is no one there. I have trouble sleeping at night because I don’t hear him breathing. Sometimes, I’ll leave the radio on all night so I can hear something. With kids like this, they become a big part of your life because they can’t function without you. It’s almost as if you are joined at the hip because their entire day depends on your ability to feed them, give them their meds, dress them and take care of their every need. They simply can not function without you. As tiring as it can be, I love taking care of Dear Son.

Or sometimes, I’ll remember everything he’s been through the last few years. The MRSA pneumonias last year and just how sick he really was. Or back in 2004, when a surgical nurse made an error and placed a feeding tube that was too large into his stomach, blocking his stomach opening. It caused him to vomit for months and endure repeated hospitalizations where he nearly died. It was a 33 days hospitalization the last time when a radiologist discovered the too large feeding tube blocked his stomach opening. Not only that, it managed to scrape the inside of his stomach. This would then get irritated. When he ate, the food would sit in the stomach and putrify. When you would pick him up bending him at the waist, he would vomit. He lost over 10% of his bodyweight in three weeks and looked emaciated. I shudder to think about this mistake. I remember calling the church from his hospital room, at 8 a.m. on Christmas morning, asking them to pray for him so he wouldn’t die. I remember eating a ham sandwich out of vending machine that Christmas day since all the restaurants were closed and wondering if Dear Son would ever eat again. No kid should have to go through that.

I remember the times prior to getting the Vagus Nerve Stimulator implanted and all of the seizures. I remember he’d have so many at night that I could no longer keep my eyes open. When that would happen, I’d lie him on the bed next to me and hold his hand so I could feel his hand shake with a seizure and then wake up to attend to it. There were so many, I never knew when I should call the doctor. It’s kind of like having a fire in your house every day-at what point do you call the fire department.? It doesn’t seem fair that he should have this much trauma in only fifteen years.

You wonder sometimes, why these things happen to such beautiful children. Why some kids have to endure so much sickness and illness in their lives. Somehow it doesn’t seem fair.

And then on the other hand, I remind myself of how grateful I am, that I have another year to celebrate with him. And indeed, I am always grateful for that. Despite that, his birthday will be different. He can’t eat so I’ll send a cake to school so his class can celebrate with him. He’ll enjoy the kids singing to him and enjoy the party.

Instead of a driver’s license, I’ll take him to get a state ID card for the disabled. It’s basically just a state ID card that identifies him as a person with disabilities. The physician fills out a form that identifies his specific class of impairment and it is recorded on the card. I thought this was important now that he’s getting older. He needs to have a formal card of identification.

We’ll open presents on Sunday even though his birthday isn’t officially until Monday. I got him a new rocking chair which I hope he’ll like. I doubt he’ll notice any difference from his current one but this one is new with a rush seat and coordinates with my dining room chairs. It has two pieces on the top that will hold his sling for the Hoyer Lift and prevent it from falling down behind his back when he sits and looks out the window. I’ll make his favorite dinner and give him a little ice cream at the end. I’ll chop it up finely, mix it all together and feed it to him slowly so he doesn’t aspirate. He always gets excited when I do that. I know it’s risky but I can’t help myself on birthdays or a holiday here or there, not to allow him to eat anything by mouth. Although he gets excited, he usually only eats/drinks what he can manage. He knows by now, that he can’t swallow very well. It’s just the thought that he likes.

As for other changes, we’ll I guess I’ll leave it at that. Sweet sixteen….and never been kissed.
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