This Sunday, December 9th, marks the 5th anniversary of my son’s Type 1 Diabetes diagnosis, the second worst day of my life, trumped only by the day my dad suddenly died from the same disease almost 5 years before. One of the best decisions we made after Owen’s diagnosis was going to The Barton Center for Diabetes Education’s family camp, where they told us to celebrate our child’s “diaversary,” as it is another year they have successfully managed living with this disease.
On Owen’s first diaversary, we threw a party for family and friends and played games designed to educate everyone about diabetes and what living with it entails. We also started the tradition of going out to eat wherever Owen wants (so far, it’s only ever been IHOP—go figure), and he picks another family whose tab we cover as a way of paying forward our gratitude. I usually post a thank you on social media to express our appreciation for all the support loved ones have given us.
It’s all very lovely.
But I’m gonna keep it real here and say that, 5 years in, I don’t really want to acknowledge another year of successfully navigating this awful disease.
Many of you know I do not post pictures of my kids on social media without their permission. When it comes to talking/writing publicly about Owen’s diabetes, I try to stick to the same philosophy and focus on my experience as a mother of someone with Type 1 Diabetes. I want to respect Owen’s privacy, not share his story, which is not mine to tell.
So I will only say this: parenting and managing our 9-year old son’s diabetes was very different than our reality today of parenting and managing our 14-year-old son’s disease. I would love to be back at that first diaversary party playing “pin the pod” on Owen’s outline or giving out prizes for guests who correctly guessed the carb count of a meal. Life was so much simpler then. My list of worries is so much longer now.
Still, the one rule I have for myself on 12/9 is not to fixate on the devastation of this disease or all the ways I might be failing as a parent of someone living with it. December 9th is a day of gratitude, and in that tradition, I will continue to focus on the positive.
This year, my focus is timely.
In 1990, as an able-bodied 11 year old, I was 23 years away from being the parent of a boy with Type 1 Diabetes. Even with a father with the disease, I didn’t understand the significance of the Americans with Disabilities Act (ADA) that President George H.W. Bush signed into law. I had no way of knowing that legislation, and the amendments made to it in 2008, signed into law by the other President Bush, would benefit my son.
Because of the ADA, it is illegal for Owen to be denied jobs or housing due to his diabetes. More pertinent to him now, though, he is allowed to take breaks to test his blood sugar and take his insulin throughout the school day, and during standardized tests, without penalty. We can go through airport security with syringes and vials of insulin without anyone batting an eye.
Because these protections have been in place since before Owen’s diagnosis, it is easy for me to take them for granted. After all, Owen is essentially “legally” allowed to treat his diabetes. Ya-hoo?
But when my father was in college, he had a red dot on his ID, preventing him from using the gym because diabetes was considered “a communicable disease.” For an athletic, competitive guy, such a limitation probably added insult to injury. (He found a work-around by covering the dot with his finger; when that failed, he’d leave and his buddies would open the back door for him. Go, Dad!)
Because of the ADA, Owen – also an athletic and competitive guy – will never be in that situation. Diabetes is a disease he has to think about and plan around all day long, every day, for the rest of his life. But thanks to President George H.W. Bush, Owen’s burden is a little lighter. And on this 5th diaversary, and in honor of President Bush’s life and service, that I can celebrate.