A few weeks ago I got the privilege of listening to a man who go to "try out" the bionic pancreas (artificial pancreas). It was like listening to a science fiction novel: A man with Type 1 Diabetes that was able to eat and drink what ever he wanted to and he never worried about his blood sugar. Although the down side is he had to wear a pump and CGM like Tommy with an additional pump that would give him sugar (or glucagon) when he went low. The 2 pumps and CGM talked to an iphone (of all things) and a very fancy application decided how much insulin to give him as he ate. What hit home for me is when he said he went to the aquarium with his family and for the first time was 100% present in the moment because he didn't need to think about his diabetes.
His talk got me thinking - how much has diabetes taken away from Tom, from Tommy, from both Allison and Brady and us as a family. The answer I came up with is TOO MUCH!!!
Each year I begin fundraising for the JDRF Walk to Cure diabetes on the anniversary of the day Tommy was diagnosed. It's my way of recognizing a hard day for us in the most positive way I know how, by trying to find a cure. I know a bionic pancreas isn't a cure but it's the closet thing we have to one right now that will allow everyone with diabetes to think a little less about their diabetes and a little more about life around them.
It's difficult to explain to someone who doesn't live with someone with diabetes what every day is like. Many people tell me how manageable the disease is and how great it is that insulin exists and that is true. What people don't see is all the decisions that are made each hour of the day to "manage" diabetes. It starts in the morning - what's the blood sugar reading - is it high or low, what to eat for breakfast sometimes hinges on what we are doing that morning - have I calculated the correct carbs - what do we need to pack up before leaving - does he have the paperwork for the nurse with is lunch carbs - and this is all before leaving for school. It's not just the decisions that need to be made is it's the little things you miss out on when you are feeling low or your sugar is too high. There are too many times to count that Tom eats a little extra sugar to "prevent a low" and while it helps in that regard it can also make him cranky and not enjoy the outing as much as he would have. It sounds small but it's not when you add a life time of those little moments. I want Tommy to get everything out of school that he can - to learn the information and be able to retain it. I want Tommy to be able to enjoy every minute of his wedding day when he gets older - I don't want diabetes to need to be factored into the day. I don't want his wife to be in the delivery room and look at his pale face and wonder if it's because he's nervous or because he's low. I don't want him to worry about carrying around a meter, a CGM, sugar to combat a low, extra insulin in case of pump failure and all the things that are needed for that list. I want the choices that he makes a day not to have to factor in diabetes first. I want him to be 100% in the moment.
So why do I do the JDRF Walk to Cure diabetes? The truth, because they need money to fund the bionic pancreas and so many more projects that takes away some of the manageable things a person with diabetes needs to manage. Simply, I want 100% of my husband and 100% of my son. Diabetes has taken too much from them and our family already!