My name is Bill, Billy, William, Woodsy or Daddy. Each name is someone different; a different role I play. Bill is my more professional and adult self, Billy is my childhood family name, William is my given name, and my sports buddies and close friends call me Woodsy, but my favorite name of all is Daddy!
“Daddy what’s thisss?” My Daughter says. She’s turning 3 soon and knows what “this” is, but kids love asking questions, especially when they already know the answer. My daughter sits on my lap, points to my insulin pump, and asks me, again, what it is. She knows no one else in the family has one but me and my guess is that she thinks it’s something special.
“It’s a pump sweetie, it delivers insulin to Daddy.” She looks puzzled. She knows what a pump is visually but its function is not something she can comprehend. She knows not to touch it, poke it, pull it, or rip it… My 11 month old son on the other hand hasn’t learned that lesson just yet. My daughter understands I am different and she recognizes that difference by the tangible devices I wear.
I play number games with her when I check my blood sugar. I go through the routine of pricking my finger and placing the blood on a test strip. She loves my new strips because they have a butterfly on them and she points that out ever time and says, “See Daddy, a butterfly.” Once I place my blood on the strip we all count out loud, “Five, four, three, two, one!” Then we both look at the number, she is as perplexed as I am sometimes with the reading. My guess is when she starts school her recognition of numbers between 100-350 will be above the average!
My daughter also loves to watch me change the insulin cartridge in my pump. She actually gets excited for it! She is capable enough to throw out or recycle the excess packaging from my supplies. It’s one of our little moments together and I enjoy it very much to have a little helper.
My two kids have gone through many early childhood milestones. When they first held up their head on their own, rolled over, sat upright, crawled, walked and talked. They also go through additional stages that tend to frustrate me and my wife. The stage of grabbing the TV remote at all costs, the stage of not giving back our cell phones, and the stage when cartoons become your daily news update. But with me and my diabetes my kids go through additional developmental stages.
My 11 month old son is at one of these stages. It’s the stage where all he wants to do is pull at my insulin pump tubing, latch on to my infusion set, or clasp on for dear life to my CGMS sensor site. It’s cute at first, until you severally underestimate the grip strength these little buggers have! If you don’t have a tubed insulin pump, try dangling a string or yo-yo in front of a small child and try to snag it back quickly. My friends, you will fail badly. It wouldn’t be that much of a problem if this was a one time thing, but it is a constant event. One obsessive stage I can’t wait to be over.
These stages are beneficial in the long run. My children have been introduced at a young age to the daily management of diabetes. It is our family’s normal routine. If I am my children’s first look at someone who is different because of a disease I am happy to be their role model. I hope the lessons I teach them about my personal diabetes challenges can flow over to how they will view someone else later in life that may be different or disabled in some way. All important lessons they will have a jump start on.
Now, I can’t write about my kids without thinking about whether or not they will develop diabetes. My wife thinks about it more than I do, but we are a team at home and, in this case, I try to give the best support I can give. This topic came up well before we decided to have kids, and still continues in my house to this day. Originally my thought was to not have my daughter tested for diabetes antibodies. I didn’t want to know, and if it was to happen, then let it happen. She would have a good teacher to learn from in this case. My wife on the other hand wanted to get her tested as soon as possible. I didn’t agree with her. I thought if we don’t know, then she doesn’t have it … but what if she did? What if I was the one to give her this awful thing? How would I feel?
Working at Glu, I am involved with more diabetes research than ever before. So I asked the smartest person in the room the question. “Should I get my daughter tested for antibodies?” Their answer was yes.
The decision was made simpler by this person showing me data from type 1 diabetes prevention trials that showed the delayed onset of diabetes. I was shocked. To me, an untrained eye, the data looked promising. This person went on to explain this wasn’t the only trial, and that there were several more. So I thought, why wouldn’t I get her tested? Was it selfish why I had said no in the beginning? Maybe so, but my new train of thought was that if she did test positive for antibodies she could be involved in diabetes research. She could help others and, possibly, herself if this was the case. A win-win.
Our decision was made that day to have her get tested. We decided to log on to TrialNet and get started. It was a simple process and our lab supplies were sent quickly. We plan on doing the same when my son reaches the right age.
If you are a parent and you haven’t had your children tested or are planning not to, I strongly suggest doing so. They can have the opportunity to be engaged in research that can help an entire living community of people with diabetes.