As a part of the JDRF’s ‘Advocacy in Action’ campaign they asked myself and others to share what life is like for us with type I. They forward the letters to congress. Below is my letter. Please feel free to add your own message in the comment area below.
"My three year old daughter has type I diabetes. We chronicle her life on our website www.ardensday.com. I believe that one of the keys to finding a cure is transparency. Transparency is the path to understanding. Frankness while uncomfortable is paramount if we’re to have honest discourse. And only that kind of raw conversation will move us closer to a cure.
Without an accurate concept of what a disease like diabetes does to a person you can't properly fight for those who are stricken. It's my goal to remove the misconceptions about my daughter's disease and leave people only with the visceral experience of what our life is like. The shots and finger sticks are just the beginning. I've watched my little girl have two seizures and I spend every second of my life trying in vain to mimic her pancreas well enough to keep that from happening again. That's my life. I'm Arden's pancreas.
As I write this Arden is sleeping. It's 9 pm., three hours since her last shot and an hour since I snuck into her room last and checked her blood sugar. If I did everything right her BG will be between 100 and 150 when I check her again. Then I'll just sit up until her BG goes up enough to give her the insulin she needs to keep her in a safe range overnight. You know, so she doesn't loose a limb or the feeling in her extremities or her sight or have a heart attack before she's 40 years old. The best part is that even if I do everything correctly it doesn't ensure that those things won't happen anyway.
I invite any and all politicians to spend a day with Arden. Live in the constant fear that I'm surrounded in. Experience the insane pressure of injecting a drug that if measured incorrectly will throw my baby into a seizure. Every three hours, 24 hrs a day, every decision I make is paramount. Too much insulin is a seizure, too little and she'll suffer catastrophic physical effects. Then at the end of the day we can sit down together and figure out why everyone is so comfortable playing politics with our children's lives. Maybe then you'll cast a real vote to find a cure.
You want to know about my life with diabetes? It's a lot like my life as a democrat. It's full of horrendous pain & disappointment on every level you can imagine and a hundred you've never considered.
I beg you, do something. You're spending more time pretending to help then it would actually take to help. Stop pandering to the fearful. Do something real and I'll celebrate your bravery forever."
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