Advocacy

Soon after Grace was diagnosed, I was listening to a program on NPR that featured a discussion of Juvenile Diabetes. The host posed the question, "For you as parents, what is the hardest thing about this disease?" There was the standard response of the worrying, the frustration, etc. One dad went down a slightly different path and answered, "the isolation." This really resonated with me. He went to explain that for him, and many parents of diabetic children, there is a tendency to withdraw from family and friends--to not even talk about how their child is doing. Unless you have a child going through this, it is very hard to convey to people how life-changing this disease is. So, you don't convey it. Family and friends may catch a glimpse of what "a day in the life" is like but it's such a technical and chronic disease, I find it hard to even explain to people how Grace is really doing. People ask and my stock response is "we have lots of ups and downs." It seems to beautifully answer the question both from a physical and emotional perspective. Most people don't understand what a low or a high is, or what an A1C number means, or frustrations with carb ratios-- it's so hard to explain. So typically, I don't.

Back to the dad. He said the one thing that helped his family was getting out there and being an advocate for his child. He became very active in the Juvenile Diabetes Research Foundation where he met other parents who shared his same frustrations and struggles. They spoke the "language of diabetes" and he had a sympathetic audience. It's not to say our family and friends are not sympathetic--because you all are. The check ins, phone calls, texts mean so much. But there are times when you need to connect with people who share your fears, anxieties, frustrations, and anger.

So I took the plunge and reached out to the JDRF. The JDRF has been rolling out its "Promise Campaign." They are hoping families with type 1 children across America will meet with their local representatives to advocate for more research funding. On Monday Grace, myself, and a JDRF advocate met with Congresswoman Schwartz. Grace was very, very quiet. Schwartz explained last year there was a little boy who was so excited to show her his insulin pump, and how it worked, and what his numbers were, and he was just gushing with diabetes information. Grace didn't do that. She curled up in a ball on my lap and buried her face in my shoulder. I didn't make her come to the meeting-she said she wanted to be there but she still struggles to talk about it. I would have loved if she could have explained the hardships of diabetes but I think actions sometimes speak lourder than words. She sat there, vulnerable and sad, crushing my hand. And I think it made an impression. Diabetes isn't all about whiz-bang technology that makes everything all better. Kids fundamentally struggle with this and people need to know that.

Congresswoman Schwartz is not only smart and articulate but also kind and compassionate. She whispered softly to Grace that she would be her friend and fight for her. And I believe her. After our meeting I spoke with the JDRF advocate. Her son was 7 when he was diagnosed and is now heading off to college. We spent a good amount of time sharing the frustrations of this disease but it was also so reassuring to hear how well her son was doing. I got that connection I was looking for. And now I have a new friend who knows the ups and downs and has promised to be there for my family to answer any questions and be a source of support. She looked me right in the eyes and said "You are not alone in this." Those were exactly the words I needed to hear.