When asked what our life is like with having to deal with diabetes my first thought is always crazy! Then I start to think about it all and most of the time I cry. I try to not let my emotions get the best of me, but lets be real, it was only a little more than 3 months ago that Little Man was diagnosed. Three months of dealing with two diabetics. One was hard enough. I don't feel like we had time in between the two diagnosis to find our new normal so it has been a big adjustment. Each day I still feel like my life is consumed with counting carbs, testing blood, keeping the Little Man out of food, figuring out why the Princess is high....you get the idea. Throw in the fact that our insurance was cancelled for February without notice, and the school board possibly cutting the school nurse program and my poor brain almost can't focus on anything else but diabetes.
Last week when the JDRF asked us to go meet with Congressman Chaffetz I couldn't pass up the opportunity, but I was scared. I laid awake all night thinking about what I was going to share. I didn't want to sound pathetic. My hubby kept telling me to just be me and share whatever comes up. I wasn't sure that "flying by the seat of my pants" was a route to go, but I trust him and his judgement. Plus I didn't have any other choice, my brain was too tired from working so much I couldn't put more than two thoughts together.
The entire family drove to Provo the next morning. The kids didn't totally understand what we were doing. We explained that a Congressman works with the President of the United States to help make laws and stuff. He was going to go to Washington DC to talk about a bill that helps fund money to research for diabetes. (the Promise to Remember Me campaign)They seemed to get that. The Princess wanted to take her own camera to document her time there. (It was a super proud mommy moment! She was thinking like me!) We were meeting up the another mother and her son who is also diabetic and the representative from the JDRF that invited us there.
I didn't know what to expect. My tummy was in knots. I was pleasantly surprised though when he invited us into his office to sit on his couch while he sat on the desk to just chat for a minute. He asked the kids a few questions about diabetes. "Is it hard?" "Do you feel different than other kids?" "How many shots do you have to have every day?" Each of the kids answered all his questions with ease. He asked us parents "how did you know they were diabetic?" The other mother stated symptoms that she saw in her son before he was diagnosed. She knew the signs. Her husband is diabetic. Congressman Chaffitz turns to us and asked the same question. Before I could answer Little Dude piped up and said "She kept peeing the bed all the time!" Oh I was worried for Princess, I was so sure that she would be so embarrassed. She didn't seem to be too effected by it thankfully and the conversation just carried on.
We talked for a few minutes. Talked about our struggles with insurance, with the school board (all of which he was very interested in) We talked about how as a mother we worry each and every day if our children are going to make it to the next without any major complications. my statement to him (that I truly hope he remembers) "I wish every day that we could just ignore diabetes. I wish that I didn't have to do all these extra things to keep our kids alive. I wish that we didn't have to get up 1 or 2 times in the middle of the night to make sure my kids are still breathing. But I can't. Diabetes can't be ignored! The hope for a cure can't be ignored either. Every improvement they make not only gets us closer to a cure, but they continually help us find ways to improve their diabetes management."
That was it. 10 minutes sitting on his black leather couch. A few minutes of pictures, and hopefully a memory to last a lifetime.
I came home feeling empowered. I could totally do that again! In fact I WANT to do that again! My voice can be heard....hopefully....if not through that way, maybe another! I can't thank the JDRF enough for that opportunity!