JDRF’s Children’s Congress: Thoughts from a Past ChairMom

I can still feel how my heart raced the day my phone rang with an amazing request. But this past week it’s been on my mind even more.

It was the fall of 2003 and when the phone in my office rang I could see on caller ID who it was. “Bonness.” The ID blinked. Rik Bonness. Former pro football player. JDRF superstar. ChairDad of the 2003 Children’s Congress, which my daughter was lucky enough to be a delegate at. What could he want?

“I have something to ask you and I want you to feel free to take some time to think about it,” he said. “I have the honor, on behalf of all of JDRF, to ask to you serve as ChairMom of Children’s Congress 2005.”

Say what? I thought. And then: Can’t they get someone good? I accepted quickly – before he could realize they were just asking a regular ole’ Mom – to which Rik said, “That’s the quickest yes I’ve ever gotten.” (And if you know Rik you can probably agree with me when I say somehow I believe that’s not true).

In any case, I was given the awesome, humbling and sometimes overwhelming honor of serving as ChairMom of this extraordinary event, one you’ve probably seen all over the news this past week.

My daughter -- on left-- singing with Gloria Loring at CC 2005

I’m sharing  because I think the week around Children’s Congress (which has taken place every other year since 1999) is a good time for us all – whether we be current delegates, past delegates, folks who have applied but were never selected, adults who are too old to be delegates or just plain folks who have been hearing about it all – to take some time and listen for our own callilng from the event.

So first I address this year’s class of delegates. Let’s get this out of the way: Man, are you a good looking group of kids. And a passionate group of parents. Watching you was pure joy. Thank you for representing all of us out here so well.

But here’s the challenge: Remember, please, that CC is not an end but a beginning. Whether you are a long-time JDRFer or a newbie, consider this week (well next week; you’ve earned a rest) your time to crank it up to the next level. When I was asked to be ChairMom, I thought a great deal about what I could bring to the position. I am not a celebrity or related to one. I’m not a famed athlete and I don’t hold any particularly powerful influence. Finally, I realized what I could bring: the power of dedication to our cause. In my year, I drilled it home regularly: I wanted my CC families to go back and give – their time, their passion, their experience, their dedication. And they have. I’m proud to say I can look across the leadership positions at JDRF, DRI, CWD and other great diabetes institutions and see not only the names of some of my CC parents, but some of my now-grown CC kids too.

So I ask you, Class of 2011, to do the same. Thousands applied to stand where you stood. Embrace your fortitude and stand up as a leader. I’ve seen you in action. You are beyond capable.

Next, I’d like to address those out there who applied but were not selected this time. I know a lot of you (because you reach out to me for an explanation from time to time). You know, having been in the position of a mom who saw her child appy three times before being selected (and one of those times, back before some things were managed better – being told by another mom that while her child had not applied, they’d been given a special invitation {after my child was turned down. Yick. That does not happen anymore}) – and being a person who sat on the committee and had to make those painful decisions: out of 1,500 applications, a good 1,499 deserve to go. And as for the one who does not? It’s just because they’re too young or too old (more on that later). Yes, you deserve to be there. But there is only so much room and there are reasons beyond who is a great kid as to why someone is selected. (Such as a particular congressional district that needs special attention. If you live in the next district over, you’d get passed over).

But here’s the thing: You might not have been in DC, but you can still be a passionate, effective and well-known leader. JDRF has a program called Promise to Remember Me. In it, people like you are asked to meet with their elected officials in their home offices to tell your story of diabetes and ask for support. This is how my daughter got to be such good friends with the late great Senator Ted Kennedy that he asked her to speak at the Democratic National Convention. No, you won’t get to sing on the lawn on the capitol. But you will build a relationship that can – and will – make a powerful impact on funding a cure for diabetes.

And if you’re dying to be part of a giant team of people passionate about diabetes and a cure, consider going to the childrenwithdiabetes.com annual Friends for Life program in Florida (happening next week; read all about it and sign up for next year). I never went because Lauren was always at camp that week. Last summer I finally got to go as a representative of JDRF. It blew me away. Yes, its way bigger than CC in numbers, but it has all the bonding, excitement and hope that CC does, just in a different package. Next summer, even though Lauren is a young adult, we are planning on attending. It has all the passion, excitement and even celebrity of CC, and it’s open to all. Check it out.

If you are an adult with type 1 and you wish CC wasn’t just for kids, consider this: The funding and the research the CC delegation is asking for supports us all. You, too, can do a Promise meeting. Or better yet, get in touch with your local chapter of whatever diabetes group you like and offer to serve as an adult with Type 1. Give them your insight, ideas and support. Who knows, maybe you will end up down in DC one day in another capacity. (And btw JDRF is working on building more adult type 1 programs now. Ask your local chapter about it).

To all the past CC delegates and their families: I know. We all yearn for a reunion. It would be great if we could figure out how (and feel free to post suggestions here). Maybe we could ask cwd to have a CC reunion at their next FFL (that’s a lot of letters there). But no matter what, we all carry with us that passion forever. It is our responsibility to keep on keeping on. We stood in the place that thousands wished they could stand in. As a past ChairMom, I know I owe it to the diabetes community to work hard until the cure comes. As past delegates, I hope you feel the same way.

After all, we promised to remember too.

5 thoughts on “JDRF’s Children’s Congress: Thoughts from a Past ChairMom

  1. Moria,
    We just returned home from CC2011 and our Anna Grace was a Maryland Delegate. We knew it would be rewarding. We knew it would be great. We didn’t know it would be life changing. We are forever changed, forever indebted and forever grateful for the opportunity to share the face of T1. Anna Grace’s Daddy, Tim served in the Air Force for 22 years and was fortunate enough to fly Air Force 2. He had access to some of the greatest leaders of our nation, but it was his journey that he experienced without us at his side. These past few days in DC, we were able to journey together with great leaders, great speakers, great athletes and incredibly strong, brave, inspiring children. We were honored to represent our State. We were honored to share our child’s stories with our Senators and Congressman. We will never forget our time in DC and will commit ourselves to continuing the battle for a cure. All of these children deserve more. We want to help bring it to each of them. Thank you so much for challenging us to continue. –Kitty Berry

  2. Great thoughts Moira! As you well know, you don’t have to go to Childrens Congress to meet a legislator or make an impact. We’ve had some great meetings with our legislators here in Massachusetts that have really made a difference. Adult Type 1s are welcome too! Sign up to attend a Promise to Remeber meeting at promise.jdrf.org and we’ll contact you when a local meeting has been set up.

    Maureen Hill Collins
    Advocacy Chair- MA

  3. Hello Moira,

    I am a journalist writing a story about diabetes camps for the parenting Website Family.lcom, and would like to interview you. If you are interested, could you contact me at healthbeat@gmail.com? Thank you. – Stacy Lu

  4. Hi Moira – I’m on the GR committee for JDRF NW. We’d like to get the families who go to CC talk about their experience (as one way of giving back) but aren’t quite sure what form that would take. I’d love to hear any advice/examples you’d have time to share. I’m at krisfitz (at) live (dot) com. Thanks, and so glad you started this blog!

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