Screening

The kids are finally in bed.

I sit down heavily on the couch, pick up the remote, and hit "rewind."

And then listen to the videotape spin loudly back to the beginning.

Joseph can just watch the tape tomorrow.

It's probably fine.

But I can't get that description out of my head-- the one I read earlier on the PBS website that started out sounding good:

This Teen Connection will include teens and expert guests who will discuss juvenile diabetes, its treatment and work that is being done to find a cure for the disease, and develop new therapies for people suffering from it.

But then, in the second paragraph:

Life expectancy for patients with the disease is often 15 years shorter than others. For patients, complications including blindness, heart disease, strokes and kidney failure are ever-present possibilities.

That was enough.

Now, don't misunderstand-- Joseph is well aware of the complications of this disease.

But still, he just turned twelve this month.

And recently, before going to bed he told me through tears that he's afraid of dying:

"I just want to be happy, and not think about it-- but sometimes when I go to bed at night, I'm scared."

Ryan joins me on the couch as I hit "play" on the remote.

A pretty young woman with dark hair welcomes us to the program-- and then tells us that:

"Every three minutes someone in the United States dies because of complications caused by diabetes."

Man.

"Tonight we're going to be talking with three teens who are living with Type 1 diabetes, and a doctor who specializes in treating the disease-- and we'll be taking calls from viewers."

She introduces her guests, and begins discussing their diagnoses, the symptoms of Type 1, and the differences between Type 1 and
Type 2. Then, a prerecorded video walks us through a detailed description of Type 1 diabetes.

And then the calls start coming in:

"I had a reading of 550," says an elderly male voice, "and I wasn't admitted to the hospital . . . should I have been admitted?"

"I have a son," says the voice of a worried mother, "and we have a lot of health issues in our family-- a lot of Type 2. [Should] parents be concerned?"

"I am in my mid-40's," another female caller says, "and I find myself every now and then craving something sweet . . . but as soon as I have it, I have an overwhelming need to lay down and take a nap and go to sleep-- is that a sign of possible diabetes?"

(Despite some of these questions, I start to wonder if I made the right decision-- if I should have just let Joseph watch this in real time so he could have participated in the dialogue.)

"Caller, go ahead with your question," says the perky, dark-haired host.

"I just wanted to say I have a comment," responds a young woman's voice. "I've been a diabetic for 21 years. I was diagnosed at the age of seven and I... um... had complications with my eyes... and now I'm completely blind at the age of 28."

I swallow hard, and stare at the screen-- at the three young people shifting uncomfortably on their stools.

In each of their frozen expressions, I see my son.

"I just recently got married," the caller continues, "and I had a baby. Blood sugars are in great control now . . . but from seven on up through 17, I was not in the best control."

Like me, Ryan sits there watching-- not saying anything for a few moments.

Just listening to this woman's story.

Willing it not to be our son's.

"Now I... um... you know -- without my vision -- can't see my baby's face, can't see my husband."

In response, the panel discusses how important it is to stay in good control-- and the wonderful statistics for those who do.

Even so, I keep hearing that voice-- long after we turn off the TV.

The Chaperone

I push open the heavy glass door, stomp my feet to release the snow that's stuck to my boots, step inside and stand still a moment-- letting my eyes adjust to the bowling alley's dim lighting.

"Oh Sandra, I'm so glad you could make it," Ms. W says, as I walk toward a crowd of over a hundred fifth graders-- and try to spot Joseph among them.

"Sorry to be so late," I tell her.

"That's fine, we just got here ourselves-- this weather is terrible."

Looking around, I see kids all over the place, wrestling with their coats, struggling to take off their boots-- many appear excited, while some look as though they'd never seen the inside of a bowling alley.

What a cool idea for a field trip.

I'm assigned to Lane 4, where Joseph will bowl with three classmates.

As I make my way over to our lane, bowling shoes in hand, I see the four boys already there: Joseph, scouting out a ball, while his fellow bowlers sit on chairs attached to a small table-- the three of them laughing, as they manically glide those chairs in and out.

"Hey-- are you guys ready to bowl?"

The threesome looks up, smiles and continues messing with their chairs, while Joseph continues looking for the 'right' ball.

Scanning the place, I see that every lane is occupied by four kids and at least one teacher or chaperone.

"Attention, please!" announces the voice of Mr G (the P. E. teacher) over the speaker system.

"I know you're anxious to get started, but listen-- I want you all to remember what you learned in our bowling unit: step forward, follow the arrows, and whatever happens, no swearing. Okay then, let's bowl!"

The place suddenly erupts with the CRACK of 30 large bowling balls connecting with wood.

I stand behind the boys, offering encouragement as each one starts out with two gutter balls.

"It's all right. Don't worry about that-- you guys are just warmin' up. Take your time."

And before long, they all start making good contact with the pins.

Now, I'm so caught up in the boys' progress that I don't really notice the woman chaperoning the girls in Lane 5-- until she comes up behind me and asks softly, "Are you Joseph's mom?"

"Yes," I respond, half paying attention.

"He is just a beautiful boy... just adorable."

"Thank you," I say, giving her a quick smile, then turning to watch Joseph knock down eight pins, pump his fist and prepare for his next roll.

"Really-- " this mom continues, "he's just beautiful."

"Which one is yours?" I ask.

"Oh, mine is T -- right over there," she says, pointing to a tall, slender girl with a magnificent head of cornrow braids and the same large, dark eyes as the woman standing next to me.

"She's stunning."

"Thank you... but that Joseph is just so cute... really, really adorable..."

That's when I turn and look directly into those dark eyes of hers-- and for the first time, notice the tears collecting along her lower lids.

"Yes-- we think so, too," I say quietly, now giving her my full attention.

"My daughter told me about your talk, about Joseph's diabetes."

And before I can tell her that it's all right -- that he's doing just fine -- she says:

"I have diabetes, too-- I've had it for five years. Type 2."

"Oh, I'm sorry."

"It's all over my family-- my dad died last year from the complications. It was horrible."

"I'm so sorry."

Just then Joseph calls over:

"Mom! Did you see that?! I got a spare!"

"Bud, I missed it-- "

He looks crestfallen.

"But I won't miss your next one," I tell him, trying to smile.

All the while the mom standing next to me stares at Joseph with that same sad, knowing expression.

Turning back to her, I tell her that he's doing really well, that "he's got an insulin pump-- "

"He needs insulin? Oh, God."

And now I desperately want this woman to understand that he's okay-- that down the road, he's gonna be okay.

I try to get the words out, but again she continues:

"I just can't imagine a child having all of this to deal with... and those complications... "

Then she wipes her eyes with her two index fingers, slowly shakes her head, and returns to Lane 5.

And I just want to scream:

NO! NO! NO!

He is NOT gonna be like your dad.

He's not.

Shaken, I hear the sound of many pins crashing down, and turn to see my son leap in the air, as we get our first strike.

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.