Guest Blog: Looking In.
Hello from my cruise! (Only sort of, because I'm loading these guest posts in ahead of time, so right now I'm home with a gray cat circling like a shark. But I'm pretending to be on the cruise, and that's a nice thought. Whoops! Digression again.)
Today's post is from Christine who blogs at By The Numbers. Her son, Thomas, was diagnosed two years ago with type 1 diabetes, and she's offered to tell her story here at SUM. And, as always, I remain in awe of the parents of diabetic kids. They're truly amazing.
Two years ago, at age 5, our son Thomas was diagnosed with diabetes. We were blindsided. I knew absolutely nothing about this disease, treatment, long term effects. Nothing. That first night in Children’s Hospital the nurse told us TJ would be receiving his first insulin dose and I wondered aloud what form that dose would take – a pill? How many doses until he would be over this diabetes thing? We were planning on a Celtics game the next day - would be out of the hospital in time? Seriously clueless.
One week later I was home, in a fog. I had a binder full of information, a list of appointments at the Joslin clinic, and pages of questions. I was like a new mother again – too many questions, too few solutions. When my babies were little, I belonged to a new mother’s support group. The women in that group were a lifeline, and I am lucky to call them great friends ten years later. In search of something similar, I began scouring the web. I didn’t find support groups, but I did find heaps of blogs (SUM included). Those became my first peek into life with diabetes.
Slowly, the care became easier. The questions became answers, the treatment became an insulin pump, diabetes became a part of our life instead of a massive intrusion. Less and less I found I wanted the answers for right now, more and more I wanted answers for the future. Although none of us can see the future for our children, I can imagine a sports event, a sleepover, a first dance. I can’t imagine an adolescent and adult life with diabetes. What would it be like for TJ to play sports, go on a date, go to college, get a job, all with diabetes in tow? It’s the desire to know the answers to those “long-term” questions that have driven me to become like a voyeur of adults with diabetes, staring in at the lives of adult (and adolescent) diabetics (or PWD’s).
The first summer after Thomas’ diagnosis, when things were still quite fresh, we were sitting on the beach when I noticed a mother on a nearby blanket. I was watching at first because she was pregnant and in a bikini – a fashion statement I was never brave enough to attempt. But then I noticed the tubing of her pump snaking around her bikini bottom. And shortly after she took a test kit out of a little makeup pouch, tested, and promptly drank a juice box. It was amazing to me – I had just witnessed someone treat a low. Sitting right there, without the big to-do that ensued in my house. I wanted to jump up and scream to all my friends, “look! That lady over there is diabetic, and more than that she is LOW!” It was then that I realized I was being rude – staring in at someone’s private life.
So, in an effort to remain socially acceptable, I have curbed my initial voyeurism a bit. But, I do allow myself a few peeks into the lives of people with diabetes. Although I stopped reading most of the blogs I found (I did have to go back to work, after all) I became addicted to SUM. Kerri (unknowing – I’m a world class lurker) became a constant source of information about life as a diabetic. While pondering a management or logistical question I will often remember back to a post I have read. Kerri’s blogs about sleepovers, for instance, allow me to see the possibilities for Thomas to also spend a night with friends.
The two adults I know find themselves the constant recipients of diabetes related questions (How much did you bolus for that? Do you ever go low while you are teaching? How often will you test now that we just finished three martinis? What kind of pump do you have? How often do you change your site?). When I am with them, they must feel as if they are under a microscope, but they are both gracious, kind, and caring individuals who have answered question upon question without so much as a sigh.
So far, I’ve been lucky. Kerri continues to update her blog daily. Those amazing adults don’t run when they see me coming, and they continue to share ideas, thoughts, and personal information. I might not be able to know what TJ is going through, and I certainly can’t predict his future, but because so many in the diabetic community are willing to offer a glimpse into their own adult lives, I have a better idea.
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Thank you so much, Christine! (And hi to Thomas!)