“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” – Christopher Reeves
I am not a professional writer or a professional blogger, I just write to the depths of cyberspace when the spirit moves me…but I do write from the heart, and that my friends is the only way I can relate the experience of watching 161 children, who all happen to have Type 1 Diabetes (T1D), stand together as a united front in our Nation’s Capitol in the hopes of winning the unwavering support of Congress in the fight to find a cure for T1D.
I have been sitting on my feelings for the last few days trying to decide how to write about this. I knew I had to…because it was amazing. Watching my 9 year old son talk eye to eye with the Senators and Representative from Rhode Island, was awesome. He stood next to them and shared his life with T1D with them, he showed them his pump and talked about the CGM. He told them how many times he checks his BG and that I get up all night to make sure the is safe, he told them that it interrupts his day and that it sometimes makes his have to sit out of activities, he told them sometimes he feels alone, he told them he could check his BG and give himself insulin before he could tie his shoes, he told them he was worried about his brother getting T1D…I was in awe.
But even more amazing than that was being constantly surrounded by kids just like him for 3 days. The instant companionship, the ability to understand each other without words, the fact that no one blinked an eye at a kid testing BG or getting a shot or sitting in a strange place (like on the grass at Arlington Cemetery) drinking a juice box or eating smarties before breakfast, by walking into the elevator and seeing a used test strip on the floor, by swimming in the pool with other kids whose parents were giving them the thumbs up sign every 20 minutes, or pulling their kids from the water every half hour to test.!
The experience of being around other “neurotic helicopter parents” (both of which I have been caled) The understanding and empathy in their eyes when you talk about that Low that took your breath away or that panicked feeling when you sleep through the 2am alarm, or the fact that they understand that feeling when you consistently walk into your sleeping child’s room silently praying that they are still breathing and that moment that feels like a life time when you are watching for chest rise and fall…it was so great.
I came home feeling empowered. Those amazing kids filled my heart with a renewed strength to fight for them, to spread awareness and to educate people about the lives of kids with T1D, to bring other kids to meet the Senators and Representatives, to remind them how close the research is coming to a cure, to spread hope and compassion and to follow the example of my son and so many others like him, who have overcome obstacles that would knock down anyone of us. These kids fight for their life everyday, synthetic insulin and electronic devices, needles and failed sites and highs and lows and ketones and stomach aches, feeling dizzy and irrational, shaky and tired and they still continue to live life to the fullest to fight for a cure to support each other sometimes just by being together. You see, there is strength in numbers, and I will forever be inspired by this experience, by these 161 kids, by my son. If these kids are any indication of our future, we are in great hands!