Yesterday, Angie Platt, Children’s Congress 2013 Chair, sent me the following so I could share her experience at the 2011 event with you, so be sure to apply by November 1 if you’re between the ages 4-17 . Hope you enjoy and be sure to leave a comment or a question for Angie:

Children’s Congress—One of our greatest life experiences as a family, thanks to Type 1 diabetes and JDRF!

My son Jonathan was diagnosed with type 1 diabetes on October 12, 2009. It was on a Monday afternoon. I took him in to see his pediatrician after school because he wasn’t himself and he had relapsed into bedwetting. Jonathan was 6 years old and had just started kindergarten. Later that evening in the emergency room with my son laying there hooked up to wires and catheters I would have never imagined that 3 years later I would be writing a blog on how type 1 has blessed our life. Let me clarify, how living with type 1 and advocating for a cure has brought wonderful blessing into our life. I know it sounds like crazy talk but please hear me out.

It’s one year after Jonathan’s type 1 diagnosis and we have adjusted to our “new normal.” Life goes on. Jonathan is back to his activities, however, there are a whole new set of protocols in place and we NEVER leave home without our special bag of supplies. We have gotten involved ever so slightly with JDRF by then and I am getting a lot of Children’s Congress emails, not really paying much attention to them. Why? Quite frankly Jonathan is only 7 years old, he has barely had type 1 for a year and what are the chances? On a whim we figure what the heck and apply. Not giving to much information too Jonathan because I don’t want him to be disappointed. October 4, 2010 I hit submit on our application minutes before the deadline and I don’t give it another thought.

Fast forward, the holiday season has passed and we are gearing up for a new year, 2011! The letter from JDRF we received in the mail didn’t really register but I was curious. By this time, we are a lot more involved with our Los Angeles Chapter so I am sure it’s something related to the chapter. The letter read:

“Thank you for your application to the Juvenile Diabetes Research Foundation’s Children’s Congress. I am pleased to let you know that you have been selected as a delegate for the 2011 JDRF Children’s Congress to be held June 20-22 in Washington, D.C.!”

Complete and utter shock! “Jonathan you are going to Washington D.C.!” We laughed, we cried (Mom and Dad did anyway) and we eagerly anticipated the storm like impact we were going to make on our Representative and Senators (Congressman Waxman and Senators Boxer and Feinstein). The months of planning leading up to the event were so exciting. Jonathan learned the lyrics to the “Promise to Remember Me” song, we made a video introducing Jonathan as a delegate, we made a scrapbook to present to our Representative and Senators and we were eagerly looking forward to our trip. We connected in advance with the other delegates from all across the US via our private Children’s Congress 2011 Facebook group. When I tell you the anticipation was building it’s just now powerful enough to express the feeling adequately.

Complete and utter confusion! When you check your mail and there is a letter from the United States Senate Committee on Homeland Security and Governmental Affairs addressed to your 7 year old son — you would think your first reaction would be to rip the envelope open. I just sat and stared at the envelope trying to understand. Upon opening the envelope…

“Dear Jonathan, We would like to invite you to testify at a hearing titled “Transforming Lives Through Diabetes Research…”

To have an opportunity of this magnitude is unfathomable. To have this opportunity due to your disease, type 1 diabetes, is bewildering. To have this opportunity at the age of 7 is incredible! My overriding feeling at that moment though was one of gratitude. I was feeling incredibly thankful. Thankful that my son will get to make lemonade out of his lemon, type 1 diabetes. So often with this disease our feelings range from anger to resentment to sadness. You and your child are constantly on guard. Monitoring blood glucose values, being extra vigilant at sports events, school, camp or sleepovers. Your heart breaks every time your child runs to you trying to hold back the tears because the catheter from their pump just came out.

Soon after, we arrived in Washington, D.C., nervous, all three of us. We weren’t sure what to expect. At the registration the comfort settled in quickly. I recognized a lot of faces from the delegate videos we all made, I made my connections from the Facebook conversations I had over the previous months and I realized that we are all here because all of us are impacted by type 1 diabetes. We are all the same. There are no explanations of what type 1 diabetes is required; it was almost like we were with our family. We felt so at ease. To be with 149 other families that know what it is like to deal with this disease on a daily basis and at the same time trying to keep things as normal as possible, is an amazing thing. To our credit, we all really make this disease look too easy. Every parent and child with type 1 that you meet is so special. Seeing the 150 children singing their hearts out to ‘promise to remember’ them, well it just doesn’t get anymore powerful than that.

The last day we prepared to descend on Capitol Hill. We had our notes, scrapbooks and nerves. It’s very intimidating your first visit to the Hill. I walked the halls hand in hand with Jonathan. Jonathan ran and skipped as we navigated to the different buildings. We held our meetings and our message was very well received; “Thank you for seeing us, Jonathan has type 1 diabetes, it’s a hard disease to live with and please continue to support our cause.”

The culmination of the day was the Senate hearing. Jonathan had practiced so many times before, he was well prepared. You are never prepared enough to have your 7 year old escorted to his seat in preparation for his Senate testimony. I held my breath as Jonathan gave his testimony, remembering to breathe at some point. A memory that will be forever imprinted in my mind, the day my son was given the opportunity to be an agent for change. To have his voice be heard!

As a parent, it breaks my heart every day to see Jonathan deal with this disease. The management alone is daunting, the emotional stress of the highs and lows for both him and myself is enough to put you over the edge. Jonathan deals with it like a champion, very rarely complaining. He is my inspiration.  To have him have the opportunity to gather together with others who share his type 1 diabetes burden, to empower him with a message and to give him the stage to express his message at a U.S. Senate hearing is an experience that I am grateful for. This experience happened because he was originally diagnosed with type 1 diabetes. Thank you JDRF for making ‘what came next’ possible.

What comes next for you? Let us hear your message. Apply to JDRF Children’s Congress 2013 today!

Angie Platt
Chair, Children’s Congress 2013
JDRF Government Relations Committee

Be sure to leave a comment or a question for Angie, I’ll make sure we pass it on to her!

Hasan Shah
JDRF Advocacy
CC13 Support Staff