Friday, May 05, 2006

He's Come A Long Way

Later this month, when the ADA's Tour de Cure takes place just 25 minutes from our house, our family will be there-- volunteering at a diabetes fundraiser for the very first time.

Ryan and I will be working the registration table-- signing in riders, collecting donations.

Meanwhile, Joseph will stand on a stage, microphone in hand-- talking about what it's like living with diabetes; sharing stories about his experiences at the ADA's summer camp last year; and sending off the riders.

He will be one of the ADA's Youth Ambassadors-- representing both the organization and the disease.


To understand just how huge this is, you need to read this post from last spring.

Because of what happened back then, I was a bit hesitant when the ADA's local coordinator had asked if Joseph would be willing to be one of the "faces of diabetes" at the Tour. She'd read the blog, you see, and thought Joseph would be a real inspiration for the riders.

But I didn't want this event to negatively impact my son-- to make him think about or fear the worst-case scenarios of the disease. Also, I worried about how he would feel talking about the role diabetes plays in his life. Would doing this make him feel the weight of it any more than he already does?

Well, we had a sort of test run last week when we attended the volunteer orientation. It was held in a large boardroom-- there were maybe 50 people in the room when we arrived. At first we stood in the back, listening to the opening remarks-- while Evan looked greedily at the many balloons scattered festively on all of the tables, and Joseph looked nervously at the crowd.

As we scanned the room, looking for a place to sit, the ADA coordinator came over and asked if Joseph would mind coming to the front and speaking to the volunteers. Another Youth Ambassador-- an 11-year-old girl named Becky -- would be joining him.

"Yeah, okay," Joseph said, still looking nervous.

Ryan and I sat down with Evan at a table near the front, as the coordinator introduced Joseph and Becky.

"Now Joseph, why don't you tell everyone what you liked best about diabetes camp."

He looked down a moment, as if he might find the words on the floor in front of him.

My heart was in my throat.

Why did I put him in this position? Here he is, in front of a crowd, no preparation, having to talk about this damn disease! What was I thinking?

But then he began to speak, at first tentatively--

"Well, it was really cool that you could go out on the lake alone . . . without any counselors . . . well, uh . . . we weren't completely alone . . . there were nurses in boats-- Oh!" he said suddenly, with enthusiasm, "I really liked that we could go fishing on our own!"

A pause.

And then, looking a bit sheepish, " . . . though I never caught anything."

Everyone laughed. And that was all he needed to hear.

When asked about his pump, Joseph pulled it out, explained how it worked, and lifted his shirt to show his site. He told them all how he'd decided to go back to shots after going to camp because "so many kids at camp did their own shots, they did it all" and he wanted to try it, too. But then, he said with a huge smile "after being back on shots for a day, I really wanted my pump back!"

And when the ADA coordinator asked about the camp's "mud pit," Joseph responded, gesturing with his hands outstretched:

"They didn't let us go in the mud pit. They told us we were too young!

We were Nine. Years. Old.

And it's mud- MUD! We were too young to play in mud!?"

Again, everyone laughed.

Throughout the remainder of the evening, people came over to speak with Joseph. They told him he did a terrific job. They asked him about his pump, about how he deals with diabetes.

He answered all of their questions with a level of ease that just blew me away.

As the meeting came to a close, Joseph asked the ADA coordinator if he could be a Youth Ambassador next year.

And then, he asked me if we could actually ride next year.


So it's all good . . . well, almost. You see, the one thing about Joseph's role that still troubles me is the idea of my son being (in essence) a "poster child" for a disease.

I never wanted that for him.

But at the same time, I couldn't be more proud of him for doing it.

Emotions I need to reconcile before the event, I guess.


Shannon said...

I'm so proud of Joseph. He's going to do such a wonderful job.

Penny said...

I echo what Shannon said. Joseph really is such a neat kid. Even though we don't really know each other or each other's kids, we hear about them quite often. And, because of that when I think of a cure I think how great it will be for Joseph and Brendon and Olivia, and Danielle, and... well, you get the picture.

He really does seem like an awesome kid. You've done a wonderfull job with him.

Anonymous said...

Hurray for Joseph - gives me goosebumps just thinking how proud you must be!

Kerri. said...

Joseph is such a cool, well adjusted kid. Your relationship with him is such a blessing and will always give him strength when life becomes a little overwhelming. You two seem to have come such a long way. You both should be very proud.

(It also sounds like he's quite a talented public speaker!)

Allison said...

Even as a "poster child" for diabetes, I still sometimes have mixed feelings about it. There is a lot of pressure, and you certainly are identified with the disease more than if you aren't heavily involved in advocacy.

On the flip side, diabetes, like other diseases, can only truly be represented accurately through examples. Christopher Reeve was the "poster child" for spinal cord injuries. Mattie Stepanek (sp?) was the "poster child" for muscular dystrophy. Michael J. Fox is a "poster child" for Parkinson's. These awesome advocates help others understand what the disease is and why there needs to be a cure. Having a doctor lecture about the symptoms and the complications doesn't work very well, because you miss the most important: the human element.

I think I'm definitely more aware of the complications of this disease because I talk about it and read about it a lot. But that drives me even more to do what I know will help everyone who has been touched by diabetes. Joseph is a smart and caring individual, and I think he will pick up on the power of speaking on something devestating like diabetes, rather than dragging him down.

And if he (or you) need any advice on the wonderful world of diabetes ask, I'm just a mouse click away.

Love to you both. Break a leg!

terrilynn said...

What a terrific kid.

Jamie said...

Sandra - you have a lot to be proud of! Yes, none of us asked for Diabetes to enter into our lives - but Joseph seems to be taking the bull by the horns and going with it. Like Allison said, seeing the human element to this disease does incredible things - awareness = education = money raised to help find a cure, hopefully leading to the ultimate - a cure.

You have a lot to be proud of - and I'm proud of YOU too, for letting him do this. It looks like he's going to do a wonderful job :)

Sandra Miller said...

I think Joseph would blush a deep red if he saw these comments... I might just have to show them to him anyway :-)

And Allison,

Thank you so much for helping me put Joseph's role in perspective. What you say here makes all the sense in the world, and makes me even more proud that -- as a diabetes advocate -- my son will be in such good company :-)

julia said...

Joseph doesn't seem to mind being an advocate. As long as he's ok with it, that's really what matters. If he ever gets to the point that he's not, then he can just stop. I think, as long as you both discuss it and stay on top of how he's feeling about doing advocacy stuff, then he should be great. But you and he both have very level heads on your shoulders and I'm sure you'll talk about all this stuff.

I wish I could have heard him speak. He sounds like a wonderful kid.

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