Life with an Asterisk
School accomplishments accentuate a childhood challenged by diabetes.
By Tom Karlya
June 2006 — My kids live with asterisks. They've always been there but events transpired recently that made it absolutely clear to me that whatever our kids with diabetes do, they do it with a little * next to it. The footnote reads, "No matter what everyone else is experiencing in this special event, my child with diabetes accomplished the same thing against much tougher odds." That is not a little thing. It's a big thing. If you have a child with diabetes, stop and think about everything your child accomplishes despite the odds they face every day while living with diabetes. For me, it was first my daughter's induction this week into the National Honor Society, which, I am told, is accomplished by only about 10% of high school kids across the nation. Second was the joy of her Junior Prom.
As I sat in the auditorium of my daughter's high school, I watched all the kids on stage who were seniors and already members of the National Honor Society as they were joined by the new inductees. One of the speakers of the evening was a senior named Steve. He caught my attention because it was the first time I would see or hear from the person who would be my daughter's prom date the following night. A good-looking kid who carried himself well, I thought to myself, "I'll like him." A half smile crept across my face as I also realized Steve would still have Kaitlyn's 6' tall-bench-press-a-million-pounds-fireman-and-law-enforcement brother to meet. He had already pledged to ‘follow them for the evening' in his car. He was kidding, of course, but it made a dad proud that my oldest felt protective of his little sister. An asterisk marks even their relationship.
TJ was just over 5 when Kaitlyn was diagnosed and although we did everything we could to balance the attention our kids received, I'm sure that on more than one occasion TJ's wants took a back seat to something Kaitlyn needed at the moment because she was too low or too high or not feeling well. He has never complained. He wouldn't — he's like that. I'm very proud of him and I tell him as much as I can. It takes a lot for a kid of 20 to volunteer as a fireman. When needed, he wakes up at 3 in the morning to race down the stairs, race to the firehouse, and again race into a burning building or to dig a broken body from a car wreck. He doesn't have to. He receives no money, but he does it because it needs to get done. I always felt that it must have been hard growing up in a house where so much centers on a sibling who has diabetes. They have a good relationship but still; it is a sibling love that has had to endure…an asterisk.
Our kids who battle diabetes are always battling in the classroom, sometimes before a test, sometimes before the prom; it remains a constant that never leaves them. Watching Kaitlyn at the Honor Society induction ceremony, my pride was as much as any parent's and yet I was also a bit envious of the other parents of the kids who were present. I wanted to stand up and tell every one of the odds that are so stacked against Kaitlyn and still she achieves academic recognition. Again her life with an asterisk. There is a good chance that the other kids had the opportunity to give 100% focus to achieve this milestone. Kaitlyn did not have that opportunity. Of course to have announced this to the world at that time would have resulted in a daughter who would not speak to me for the rest of her life...and I would miss those butterfly kisses. It's just not fair.
And the prom? She had a fabulous time, forgetting the time it took to find the dress she had always imagined would have a place to wear her insulin pump. The unfortunate reality is that even her wardrobe comes with an asterisk. As she came out of her room the morning after, I asked her about her magical evening. I expected to hear the joys of being chosen for the Prom Court by her peers and teachers, or about the parties or the prom itself. Instead, I received an "it was good" as she reached up and took another bite of the glucose tablet in her hand and she made her way to the kitchen to treat her pending low in the 40s. Even the excitement of the prom, for a child with diabetes, comes with an asterisk. And yet, through it all, I'm incredibly grateful, as I know my daughter is about the same age as was the daughter of one of the people I admire most on this earth, Mr. Marc Goodman.
An unkind fate befell his daughter, Stacy. She was 17 when she died. Too young. She had diabetes. Since such time, Marc has spent countless hours changing the face of diabetes so no one else would have to live through what Stacy and her family endured. He, along with his business partner Ken Shewer, and their wives, Esther Goodman and Susan Winberg, has sat at the helm of raising millions upon millions of dollars (and a lot of that from their own resources). These four incredible individuals have made a monumental difference. They could have all walked away and everyone would have understood. But that's not Marc. Instead they delved straight in both tirelessly and unceasingly. Marc steps down next month as his term comes to an end as Chairman of the Board of the Diabetes Research Institute Foundation; big shoes to fill. Very big shoes. So here's to you Marc. Thank you for all that you've done in the diabetes world and also for teaching all of us how to make a difference, no matter the cost. I'm sure you'll never be too far away from the cause.
When I see my daughter overcoming odds and achieving great things, I'm also moved to tears and reminded about how much Marc would change everything in his life in a New-York-minute for the chance to have Stacy live a life with an asterisk.
I'm a diabetes dad.
TJ and Kaitlyn on prom night.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
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