Joy To The World: Keeping Your Spirits Up with a Progressive Disease

Dear Son at home.

Over the few weeks or so, I had been telling Dear Son stories about himself to keep his spirits up. Since his hospitalization last November, he has lost the ability to move his feet and legs and can no longer move his hands. I could no longer tell him that he would get stronger as I had always done, to reinforce the goals of physical therapy. I had to retrain myself a bit to not say those things since I know deep down that those skills are not coming back. At some point, in a progressive illness, the illness begins to win.

That being said, I wanted to make sure that Dear Son remained strong. I worried that losing all of your abilities to move might impact how he felt about himself. I was worried he might get depressed. I have always believed that one of the best things you can do for your children is to make them feel good about who they are and certainly, now that’s he’s battling a progressive disease, it’s a bit harder. I began telling him good things about himself and using examples from his childhood to reinforce the stories. Dear Son would lie in his bed and listen to me. I am always quite excited and animated when I talk to him, trying to get a smile from him. That’s not always easy when they are eighteen, lol. I would tell him how his smile lights up a room and that people always comment on how handsome he is; I tell him stories of how so and so said he was handsome, and that it wasn’t just his Mom saying what a handsome man he was.

Dear Son in his ball pit at home.

I’d talk about his good sense of humor and how when he was small, we’d get into the elevator at Big City Children’s Rehab Hopsital and Dear Son would start laughing; he loved elevators. The rest of the people in the elevator didn’t know it then, but soon everyone would be laughing. Dear Son would squeal when he got into the elevator and start laughing. He’d laugh so hard as the elevator went up that soon everyone in the elevator would start laughing. He had one of those laughs that made everyone laugh. I told him the story and then would comment that making everyone laugh was something that was good about him and that not everyone was like that. Or I’ll tell him stories about daycare. Dear Son would laugh every time the daycare own told a child they couldn’t do something. She’d say it in her thick accent and Dear Son would laugh because someone was getting in trouble, which he loved. The more she talked the harder he laughed which made it difficult to get the other kids to listen. Then she’d tell Dear Son to stop laughing which made him laugh harder. Soon she started laughing and soon everyone was laughing at the daycare. That’s the kind of kid he was.



Dear Son at school, preparing to make dog treats.

As his deterioration has progressed, I began to worry about Dear Son and how that must feel when your body doesn’t work like it used to. As a result, I’d focus on his personality or his smile. I told him that when he smiles, he lights up a room and that other people always notice his smile. I’d tell him that not everyone is like that and that is something special that is unique to him. He’d listen to me and I could tell he was thinking about it. I’d remind him that I always ask to see his face when I talk to him so I can see his smile, because it’s beautiful. Sometimes he has Mickey Mouse in front of his face when he’s lying down and I can’t see his face. (Since he can’t speak, I need to see his face to see if something is wrong.) What I wanted to do was to keep Dear Son’s spirits up and help him feel good about himself.


Summer School Parent Open House

So it was interesting when I received a call this week from the school nurse. Unlike the last ten years when my contact was the head nurse over all of the special education students, we now have a new set of people now that he is out of high school and at the Transition Center. She called to introduce herself and talk about Dear Son. She had called to ask if I could send the suction machine to school since Dear Son’s drooling was an issue. She said if they could suction it out of his mouth instead of constantly wiping his mouth, it would be less disruptive to Dear Son when he’s doing an activity. During the conversation however, she went on and on about what a wonderful kid Dear Son was. She talked about how excited he got when he saw his teacher on Tuesday. She said he nearly jumped out of his chair he was so excited. Then she talked about how much he is enjoying school with the other kids. She said they have some higher functioning kids (usually this means kids who can walk and talk) that go out on trips and Dear Son gets to go with these kids because he “gets it”. She said Dear Son is one of those kids who knows what’s going on but is trapped in this body that doesn’t work. She talked about what a beautiful child he was, how handsome he was, how beautiful his eyes were and about his smile. She said his personality was something else. She couldn’t stop talking about him. She must have talked about him some thirty minutes, most of it gushing about Dear Son as she had never met him prior to this year. She said he’s like a celebrity because everywhere he goes someone sees him and says hello to him. But the best compliment was when she said, he “loves life”. She said that he “loves life and wants to soak in everything it has to offer”. She talked about his gorgeous smile and how it just lights up a room. I had to smile when I heard that since I had just told Dear Son that same thing earlier in the week. At the end of the call, I felt really good: good that Dear Son was going to school, good that he was happy and good that he was feeling good about himself. That is all you ever want for your children is for them to be happy. As I tell Dear Son all the time, when he smiles, I know he is happy and when he’s happy, it makes his Mama’s heart sing.