A couple of weeks ago, Sandra Miller wrote a post about her son, Joseph and their fairly unshakeable belief that there will be a cure for diabetes soon. I didn't comment at the time because I just don't share those beliefs.
Nine years ago today, O was diagnosed with type 1 diabetes. The details of that time are horrific and still make me cry, all these years later. For over 8 months, I knew something was wrong. She wasn't talking much. I couldn't get her toilet trained at all. She slept all the time - very unusual for a kid a little over 2 years old.
I kept going to the doctor's with her. They said she probably had some learning delays, so they put her in Early Intervention. They said she probably had an immature bladder and to not push the toilet training too hard. They said she probably just needed more sleep than most kids.
And then she stopped walking. She'd sit on the floor at my feet and beg to be picked up. When we went outside, she'd walk for a few steps and then turn to me, put her arms up in the air and cry to be carried. She cried a lot those last few weeks before she was diagnosed. I cried a lot, too. I cried because she just wasn't herself. I cried because I was terrified. I cried because I looked at my gorgeous little girl and realized that she was nearly see-through. I cried because, at almost three years old, she only weighed 23 pounds.
After weeks of pushing the doctors to do something, ANYthing, to figure out what was wrong with her, someone at the practise finally listened to me. They did a urine test and sent me home, thinking, I'm sure, that I was just another paranoid mother, overreacting. I had no more walked in the door from the appointment than they were on the phone, telling me to get back there immediately.
And so began our lives. A new life of shots and log books and blood sugar tests. A life alien to the one I expected for my child, but still, a life. A life full of soccer and friends and sleepovers and makeup and clothes and crushes on boys. A life lived in spite of diabetes. A life lived TO spite diabetes.
For the first year after her diagnosis, she saw Dr. Craig Alter. He's a fantastic endocrinologist who has since gone on to head pediatric endocrinology at Children's Hospital of Philadelphia. At the time, he told me that he firmly believed that there would be a cure within 5 years. We've almost doubled that time span and there is still no cure. When those five years had passed and there was no talk of a cure, I was furious. Furious that there was no cure but even more furious that the doctors had gotten my hopes up.
That, to me, is the cruelest thing. Why would you tell someone that you think there will be a cure for this disease when you don't know? Why would you get a parent's hopes up, only to have them dashed again and again? Why would you tell a CHILD that you believe that there will be a cure in X number of years? It's inexcusable.
I'm not saying that there shouldn't be a hope for a cure - of course there should be. But there shouldn't be a timeline. Sooner is better, but saying it will definitely happen in five, ten, fifteen years is unbelievably cruel.
This is why I've never talked of when there will be a cure with O. We keep up to date on the latest research and we talk about what it will mean for her and other people with diabetes. We talk about all the famous people who have diabetes - at camp this year, she met Will Cross, the man with type 1 who climbed Mt. Everest and she thought he was just about the coolest guy ever. She cheered on Jason Johnson, a pitcher (briefly) for the Red Sox, who has type 1. She's a big fan of Gary Hall, Jr., the Olympic swimmer. I want her to see what she can do, in spite of her diabetes. I want her to see how far she can go, how she doesn't have to let this disease shape her life.
But I will not hold out false hope for a cure. I don't want to do that to my daughter.