Thursday, April 21, 2011
a box full of hope
Last night, we opened our front door to head out to do errands, when we discovered that a huge brown box was sitting on our doorstep. It was called a "hope box" or "hope bag" that is put together by the Juvenile Diabetes Research Fund for newly diagnosed children with type 1 diabetes.
In the box was a little teddy bear named Rufus that also has type 1 diabetes. Our sweetie was so excited to receive him and enjoys checking his blood sugar levels now too. In the box, came an extra checking device so that is her teddy bears for now.
We also received a video of other kids talking about life with diabetes. This video is only 10 minutes long, but she enjoys watching it over and over, to see kids just like her.
It is nice that boxes like this arrive on your doorstep. so much of life keeps carrying on and diabetes has become a side show. She gets checked constantly and fed food at certain times. sometimes she is made to eat candy and sometimes we have to hide candy from her.
But this box allowed her to be validated. Suddenly diabetes took the center stage for her in a good way. She was embraced and shown that others know what she is going through too.
When my six year old had broken her leg and was in a body cast, our home nurse brought her a huge teddy bear named Zeep that also had a cast on his leg. and the day that she was able to get her cast off; of course Zeep got his off too.
I'm so happy for our daughter to be celebrated at long last and loved and embraced WITH her diabetes. It's not a "condition" anymore, its part of who she is and that can make her special.
I must say though; going through the box, picking up literature after carb counting book, after insulated totebag, I did fight back tears. It's bittersweet. Happy for her, but reality check for us.
MY daughter has diabetes.
I was discussing with another mom how some people just don't get the seriousness of juvenile diabetes. How some people assume that soon it will just be under control and life will continue as it was. I think a lot of that is because we hear the term "diabetes" a lot in our society. We hear "gestational diabetes"; type 2 diabetes. The problem is; these are very different than type 1 diabetes.
Insulin dependent juvenile diabetes.
It's not a matter of just not eating sugar. Or a matter that diet and exercise will fix. This is a matter of her pancreas has stopped working. This is a matter of when she was diagnosed, her kidneys had stopped working too. If her body can't process sugar and it isn't caught, she can die. She was dying when she was diagnosed.
This is a matter of writing down every single thing she eats and playing a balancing game every day for the rest of her life trying to match her body and food she eats with insulin. If her blood sugar drops too low, she can go into a coma. If it goes too high, her body starts producing acid that is toxic and causes the kidneys to stop working again.
We walk with a seriousness that we must be in control of 24 hours everyday. Some people think that it is no big deal. We know that it is a very big deal.
Thank goodness for organizations like JDRF that help try to celebrate the new normal in the middle of the heavy cloud that we carry.