Monday, April 05, 2010

Fading Away...

I wrote this post last week and thought you might enjoy it.
I remember Dear Son sitting at the daycare center getting ready to kick the ball. Dear Son, sitting on the floor, his right knee up and his left foot and knee on the floor, in position to kick the ball. The daycare worker was less than five feet away, ready to roll the ball over to Dear Son so he could kick it. Dear Son was ten at the time, and for most kids, they’d be kicking a ball elsewhere by now but he rather enjoyed sitting there ready for action. He’d lean back somewhat on his hip with his hands in the air, not really contributing to his balance at all, just hanging out in the air somewhere, oblivious to the rest of his body. I laughed to myself as I looked at the daycare worker, knowing that she was seriously underestimating Dear Son. I could either spoil it for Dear Son by telling her to back up or give him the pleasure of winning for a change. I choose the latter. The ball rolled forward towards him and he smiled in anticipation. In one fell swoop he belted that ball as hard as he could straight at her. Normally, he hits them right in the gut because they are typically standing way too close but this time, she dodges the ball and has to run far to get it. He laughs heartily. If there is one thing about Dear Son, he has a great laugh and a great smile. It’s times like this, that well, he is perfect.

Dad was reminiscing about Dear Son, about the times he used to kick the ball with his foot. He wished he could do it again and suddenly, now that Dear Son can no longer do those things, he has to deal with the ugly reality that things won’t ever be the same. It happens more often now, remembering back to when he walked on his knees in the kitchen when he was hungry or scrambled towards an open door walking on his knees as fast as he could to try to get outside before you could “catch” him. All the while, he had a big smile on his face. He was the happiest kid in the world. You couldn’t help but love him.

Dad was reminiscing after I told him about our day. I took Dear Son out for a small walk and then after our walk, we sat outside for a bit. I tried massaging his left leg to help with his circulation. His left foot and calf are always swollen now and we’ve dubbed the left foot, his “brick foot”, due to it’s height. Massaging his leg is tough, because it’s so hard. It doesn’t move when you try to massage it. I gave him a short massage, then worked on moving both of his feet, moving his toes and doing just about anything to help him get some circulation going. I tried some leg extensions to stretch his muscles but everything was just so tight. I talked to him about moving his legs, but he couldn’t move them at all. Finally, I took the footrests off of the wheelchair and took a giant therapy ball and rolled it towards him trying to get him to kick the ball with either foot. It was windy outside and the wind move the ball more than he did. It was hard to tell if there was any movement at all in his feet, however I decided to err on his side and congratulated him for moving his feet. I worked on rolling the ball towards him and asking him to kick the ball. We did this a bunch of times and then I’d step back requiring him to kick it further. I kept teasing him that I hoped I wouldn’t have to run after the ball hoping he’s somehow give it a swift kick like the good ol’ days however that never happened. Typically, if I said something like that, he’d always respond and give the ball a swift kick.

My days feel a lot longer now. I feel as if I am in a race against time, where Dear Son is concerned. My goal is no longer on how to move forward but how to slow down the regression. Suddenly, I am working hard putting on his arm braces to slow down the contractures of his hands. I am working on trying to improve the circulation in his legs and feet. I am putting a pillow under his foot when he sleeps to ward off pressure sores. And when I finally lie down to sleep, I count the seconds between his breaths…one one thousand, two one thousand…six one thousand…then I ask him if he’s o.k., as if he can answer me. I listen some more but there is nothing…fifteen one thousand…and then I yell out, “breathe” hoping that he will hear my voice and suddenly breathe. I hear him take a breathe and then start counting again. Some nights, I am up every two hours to turn him over and other nights, he sleeps longer. I pay the price the next morning when I see a red spot on his foot. I know I have to get up and turn him over even if he doesn’t wake up. I can’t let him get a pressure sore.

So the days go on like this. It’s a lot to do now and some days, I am pretty exhausted. And apparently, so is Dear Son.

But there are also pockets of great joy in our days. Today, after four days, he finally gave me a kiss. He thinks it’s funny sometimes, to make me wait and count the days. Even his kisses have deteriorated. He used to take his tongue and lick my hand to give me a kiss. After a while, he couldn’t do that so he would take his head and hit my hand. It was more like a “head butt” but still it was cute. Now it’s barely a whimper. He can hardly move his head to touch my hand. It’s odd in many ways to watch his skills fade away. They kind of sneak up on you and when you finally notice, it seems like just yesterday when he could do “x” when in reality, it’s been years.

I often wonder though, what he’s thinking now. Just tonight he was lying in his bed, as I got his dinner meds. The windows and doors were open in our house and you could hear the children playing outside in the play area. They were noisy and loud and unlike other days, they stayed longer since it was unseasonably warm today. I wonder if he remembers what it was like at the daycare center, sitting in the dirt hole on a beautiful day, playing in the dirt with his face to the sun. I wonder if he misses that or if he wishes he could be outside with the kids, watching them play and hearing them laugh.

It’s interesting how people fade away. You think that one day they have the skill and the next day they won’t, but it doesn’t work that way. Instead, it’s a long, slow process. They lose their skills the same way they acquired them, little by little. I remember waiting for the day that he could walk in his walker. There is no specific day. Instead it comes gradually. It’s the same way now, he just kind of fades away.

But as his physical skills deteriorate, there is still one thing that he can do that brings him joy. He can hear and he listens. Today, he smiled as he heard me sing an old nursery rhyme to him. He loves to hear me sing and not only does it relax him but he smiles. On the days he goes to school, I sit in the rocker and he sits in the wheelchair as we wait for the school bus and he always seems to enjoy it when I tell him to listen for the birdies singing. He stops and listens and then smiles when he hears them sing. And on the days that it rains, I open the window in his bedroom so he can hear the rain coming down. And when the cat meows, he gets a big smile on his face because he knows the cat wants to give him a kiss. As I looked at my Dear Son today, I realized that he knew the secret to a good life. You can’t focus on what you don’t have, but take pleasure in the gifts you are given.
Note: Dear Son is 18 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.


Michelle said...

ok, do I laugh or cry? Both, maybe. Ive been following your blog long enough to remember when he could do some of that. I am sad for him, and yet so glad that he can still find joy. You are a wonderful Mom, and he is a lucky young man, in his way. Always thinking about you guys. Michelle

Anne said...

Much love to both you and dear son. You are a strong woman, and Dear Son certainly draws upon your resiliency to add it to his own.

Kristin@Boulevard Interior Design said...

I think both Michelle. Glad to hear the MAW trip is on the books.

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