Tuesday, July 24, 2018

Smash diabetes!

Sometimes, in order to save my seven year old son's life, I give him gummy bears. A friend of mine once helped me out by giving him Cheetos. I've also given him cake frosting, which I had to do the last time we took a bike ride. I just told him to open his mouth as I squeezed it right out of the tube.

Before you think to yourself, "Gummy bears? Cheetos? Cake frosting? What kind of wonderful disease is this and how do I catch it?" I've gotta break the bad news to you. For starters, it's type one diabetes, and that also means getting a lot of shots and needing insulin in order to properly digest food. If you still want it despite all of that, sorry, but you can't catch diabetes. Basically, your immune system needs to attack your own body. (That's type one diabetes anyway. Type two is another story, and you can look into that for yourself.)

It's been about a year now since my son was diagnosed. I can laugh about it and see the humor now, but I certainly couldn't then. I remember while my son was in the hospital, I was having dinner with my in-laws at a restaurant right next door. I had to get up and leave during my meal so I could just sit outside the place and cry. No doubt lots of people who were walking and driving by saw me, but I didn't care because there was just so much pain that I had to get out.

Diabetes didn't happen to me. It's my son who's going to have to live with it and deal with it for the rest of his life. But most of you parents know that a child is a piece of yourself that you let go into the world. Not only that, but it's the most vulnerable part. It's the part where you'd sacrifice the rest of you to save. I wrote some time ago about how my great-grandfather died while saving one of his children, but unfortunately there are no horses that I can jump in front of in order to save my son from diabetes.

Want to know what's really horrible? If you have kids, you no doubt know how much they don't like shots. Imagine telling your kid that there's not just another shot coming up later that day but that shots are going to be a regular thing for him several times a day for what's probably going to be the rest of his life. I'll never forget the look on his face, and I'll never forget how I felt.

Another thing that I remember shortly after coming home is that I watched the horror film It Follows. I don't want to get too bogged down into the plot right now, but ultimately it's about a monster (that takes the form of a person) that will continuously hunt down its victim. There are all kinds of things that the victim can do to temporarily get away and/or delay its inevitable arrival. Strangely enough, I found this film to be not just a great horror film but strangely cathartic. This is essentially what diabetes is. It's a death sentence. My son can stop that rise in blood sugar with insulin, but eventually he's going to have to take insulin again with his next meal. I guess the film held a mirror up to reality and helped me to deal with it.

Another pretty bad thing was when I was taking care of him a couple of days after he came back from the hospital. We were trying to do the finger prick so he could find out his blood sugar level. For some reason, the device wasn't set to the right level, and there wasn't enough blood coming out to get a proper reading. I made the poor guy poke himself again and again, and the whole time he just wanted to eat some lunch. I pretty much freaked the hell out by cursing and shouting and banging my fists on the table. (In full disclosure, I was also pretty hungry, which no doubt made me think less clearly. Parents! Take care of yourselves if you want to take care of your kids!)

One of the worst things, which fills me with guilt, is a picture of my son that was taken shortly before his diagnosis. He looks so gaunt in that picture. I ask myself how I didn't notice. Why didn't I insist on taking him to the hospital sooner? Why was I in such denial and figure that he'd snap out of it just like I pretty much always do when something's wrong with me?

Of course, I know it's hard to tell in the moment because he didn't go from healthy-looking to sickly overnight. Plus, I need to take comfort in the fact that my wife and I have been taking good care of him (and even he does his part) so that he looks really strong and healthy now.

But still, that guilt monster comes crawling back at me just when I think I've defeated it. (I guess that movie works on a few levels for me. Funny how it's really more of an obvious metaphor for STDs, but as I always tell my students, sometimes a deeper level to a story comes more from what the audience gets out of it than what the storyteller intended.)

I originally wrote a longer post where I detailed what happened when he was diagnosed, while also going into my own struggle with anxiety and depression that I was battling right before then. Maybe I'll get to those at another time. Right now, I needed to get some of this stuff off my chest. This was too hard for me to write about until just recently. Not too long ago, it seemed like I couldn't even look at my son without feeling sorrow for the fact that he had this disease. When I would see pictures of him when he was younger, I could only think about how that was before his diagnosis and everything was so much easier then.

Like I said, I can laugh at some of the absurdities of it all now. Perhaps it's because shots aren't that big a deal for him to get or for me to give. He's always willing to take another if he's hungry enough for another slice of pizza or more fried chicken. I've also discovered how brave of a kid that I have. It's a hell of a way to find out, but I'm pretty confident in saying that he is brave because I've seen him put it into action.

And while it's true that he's been handed a death sentence, haven't we all? It's all just more immediate for him, and while I always worry about the future, there was never any guarantee that everything would be okay. Now I just don't get to pretend anymore.

1 comment:

Jody Vásquez said...

Thanks for writing. It’s so confusing and painful when something happens to a child that you’d much rather happen to you. I appreciate the vulnerable exploration.