Friday, April 22, 2005

He Found Out

Last week Joseph and I went out to pick a video for our "Friday Night Family Movie," and to get some takeout for dinner. Joseph was in a terrific mood-- and with good reason. We had just gotten him a long-overdue new bike the week before (he's getting so tall!); he recently started playing little-league baseball and was really enjoying it; and we were on a roll with his blood sugar control-- no big highs or lows for almost a week.

I was feeling pretty darn good myself.

Anyhow, as we were walking toward the video store entrance, I put my arm around Joseph. Surprisingly, instead of checking to see if anyone was looking at us (and pulling away if that was the case), he just slipped his arm around my waist, looked up at me and smiled.

Man. I love this kid.

So we walked in the store, browsed the new releases, and found nothing. Eventually we settled on My Big Fat Greek Wedding. Joseph said he was up for a comedy. I promised him that he'd love it.

Next stop was Noodles & Company to pick up dinner. Just after placing our order, we sat down to wait for our name to be called. It was then that Joseph noticed the poster on the wall behind me. In large letters were the words "Tour de Cure." It was a bike-ride fundraiser sponsored by the American Diabetes Foundation. Joseph jumped out of his chair to get a closer look at the poster. "Mom, we should do this! I think I saw flyers near the cash register." Before I could say anything, he disappeared into the crowd of people waiting to place their order. And before I could call him back, Joseph reappeared holding a small stack of pamphlets.

"Mom, we could give these out to my friends. It says you can form a team. What do you think we should call ours?"

"How about 'Joseph's Crew'?"

"Nah. I don't want it named after me. I know. How about 'The Madison Mad Riders'?"

"Very cool" I said.

So, he sat back down and began studying the pamphlet in earnest. And that is when he found out.

"Blindness" I heard him say in a barely audible voice. “Heart disease.” Quickly I opened one of the flyers and saw what he was reading: "Diabetes can lead to blindness, heart disease, stroke, kidney failure and amputations."

I went cold.

"Joseph, these are the complications of uncontrolled, untreated diabetes. That is NOT you.” The words just tumbled out. And with every one my heart broke a little more as I realized there is no going back. He knows.

His head was down as he continued looking at the page. He said nothing.

"Joseph, the ADA needs to motivate people to ride for a cure. If they write that diabetes is a condition that can be controlled with good habits, careful monitoring and insulin, then motivating people to raise money for a cure would be much more difficult."

Joseph was very quiet on the ride home in the car. Stupidly, I said that dad would really be psyched about doing the ADA bike ride with us.

“I don't want to do that anymore.” That was all he said.

Since last Friday I've felt horrible about not having sat him down early on and told him about the complications of diabetes in more detail. Since his diagnosis I have stressed the importance of good control, and alluded to the fact that people with diabetes who do not take care of themselves can experience other health problems-- while those with good habits tend to be healthier than many in the general population. Joseph's always been so good about checking his sugars, bolusing, and just really being in tuned to his body. We haven't had a problem (so far) motivating him to work with us. And he's been great about letting me know when this stuff is getting to him.

But all this time I've felt like I was keeping some sort of terrible secret from him. When I raised this issue in the past with the folks at his clinic, they said that "he's still young, and he hasn't had diabetes for very long. There's no need to give him anything more to worry about now." And Joseph does tend to worry about things. Eight months ago, when we picked up his prescriptions for the first time, he expressed surprise and concern over the cost of these items. "How am I going to pay for these things when I grow up?"

And now there's blindness. Heart disease. Kidney failure. Amputations.

Last night Joseph was thumbing through our Calorie King pocket carb counter. I took the opportunity to point out the section in there on diabetes. It mentions complications, but prefaces a description with the words “if untreated, diabetes can lead to... " I said "you're getting insulin, you are being treated for this and... ”

“Mom, I'm not scared.”

“What?” I said.

"Mom, you already told me all this. I really understand."

And with that he gave me a little smile and went back to looking at the carb book, shaking his head a bit as he turned the page.


Teresa Kilroy said...

This is an awesome blog. Keep writing! Did Joseph change his mind about doing the bike ride?

Sandra Miller said...

No, he still isn't up for doing that ride. When I asked him about it this week, he said "not interested," but he did say he'd like to help raise money for someone like Denise Faustman-- someone who might "really cure diabetes, because mom, I don't want to have this stupid disease for the rest of my life. It's really annoying sometimes." Indeed.

Metal Raven said...

If he really wants an easy way to raise money, the simplest things can help.. Car washes, mowing lawns, etc.. If you want to encourage him any further, a possibility is to ask him to do a few extra things around the house.. Small things, it's up to you.

And when he does them, give him a little money that he, himself, can donate. That way, he'll feel like he's raising it all by himself.

I know I'm no parent, so you don't have to use my suggestions, but it sounded decent in my mind.

Great Blog. Keep it up.

Sandra Miller said...

Since his diagnosis, Joseph has been a bit hesitant to get involved with larger fundraising efforts (that's why I was so surprised by his initial enthusiasm about the Tour de Cure).

Encouraging him to earn and donate his own money would be a nice way to get him involved in the effort to find a cure. And, it would certainly appeal to his desire for more independence.

Thanks for the excellent suggestions.

Shannon said...

This brought tears to my eyes. I dread the day when Brendon tells me how he feels about his diabetes. I can live with the day to day management, but not with the emotions involved. I have a feeling I won't be able to hide my head in the sand for much longer.

Sandra Miller said...

Yes, you're right. The emotions are the toughest part-- knowing that, while you can do many things to prevent future complications, you can't prevent your child from having to face the idea of them.

type1dad said...

Thanks for your comment. It's nice to know someone is reading it. I read "He found out" with tears in my eyes. With the everyday regimen of shots and finger pricks, its easy to forget about the real dangers of this disease. I don't know if Olivia is yet old enough to fully understand. Or maybe Dad isn't ready. I was just telling someone the other day that the fundraising helps my wife and I to cope. Whether it is healthy coping I'm not sure.

Olivia is currently on Lantus and Novolog. How much time did you put into pump classes and preparation.

Would you mind if I linked to your blog.

Be Well,

Penny said...

This one brought the tears to my eyes. Since Riley is only 3, reading your posts really helps me to look into the future with him. I don't always like what I see, but it helps me to prepare somewhat for what's to come.