Thoughts on My Son’s 5th Diaversary: Thank you, President Bush

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.

2014-12-7 - Owen's Diaversary-0010On 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.

2014-12-7 - Owen's Diaversary-0059So 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.

ADA

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.

Intervention

(Note: “Five-Minute Friday” is an activity adapted from Kate Motaung’s blog. Each week, I use https://randomwordgenerator.com/ and write for five minutes straight with the word as a prompt, free-write style with no editing and no over-thinking.)

At the start of this week, I spent time with Stephen King via reading his On Writing, a book I’ve owned since it came out and thought I had read, but clearly I didn’t since none of it seemed familiar. In it, he claims writers can’t hone their craft unless they are also readers. He reads 70-80 books a year, which surprised me because that’s about my yearly haul, too, or at least it has been since I’ve recommitted to reading a few years ago.

For me, books are interventions of sorts. Whether fiction or non, something in what I am reading resonates with me and causes me to pause and think about an issue from a different angle. King’s On Writing was a much-needed intervention because it reminded me – re-inspired me, if you will – to get back to the book I’ve been working on but have strayed away from. Actually, it also reminded me of a story idea that’s been in my head for a decade or more that I’ve never developed (a different story than the BIG BOOK PROJECT).

The book I am about to finish today, Purple Hibiscus, by one of my board of directors, Chimamanda Ngozi Adichie, is prompting me to think more about religion and how healthy it is for children (teens) to think for themselves and search for their own meanings – whether they circle back to their parents’ beliefs or not.

The scene that lies in the background for both of these books and the “interventions” they raised for me is when my father insisted I make my confirmation. At the moment, it strikes me as the only parenting move of his that I cannot understand.

Horrible and Wonderful

Today, I’m taking a break from “Five-Minute Friday” because I have so much on my mind that it really wouldn’t matter what the “word” is – my subconscious would take me down a particular path anyway. I’m still going to write this free-write style (writing continuously, no editing), but 5 minutes isn’t gonna cut it today.

I’m thinking about a conversation my brother-in-law and I had a month and a half ago about when he asked me my thoughts on parenting. As the mother of two teenagers who have, so far, turned out reasonably well, I suppose I’m as qualified as the next person to offer perspective. In that same conversation, my brother-in-law recommended the book Everything Is Horrible and Wonderful, the title of which is based on a tweet from comedian/producer Harris Wittels: “We are all horrible and wonderful and figuring it out.” (I highly recommend the book, by the way.)

It’s been an emotional week, parenting-wise, precipitated by 3 concurrent events: health insurance re-enrollment time, my daughter turning 16, and my son’s quarterly endocrinologist appointment. At the moment, I’m inclined to borrow from Wittels’s tweet: Parenting is horrible and wonderful, and we’re figuring it out. Key word is figuring because the reality is that I don’t think any parenting issue is ever “figureD out,” case closed, end of story. It’s too contextual. It’s too nuanced. From kid to kid, from age to age, from one day to the next day.

I’m changing my mind and my stance ALL THE TIME. To all the first-time parents-to-be that I know: get comfortable with the grey and humble yourself…or parenting will gladly do it for you.

Here’s what’s been “horrible” this week: the slap-in-the-face reminder, per health insurance reenrollment, that Type 1 diabetes (T1D) is an expensive condition that has shaped our family’s choices and limited our options and will most likely continue to do so for Owen when he becomes an adult (and I’m not just talking about health insurance here – that was just the catalyst). I think back to when Owen was first diagnosed and he asked me, “If you could give me your pancreas, would you?” Oh, honey. You have no idea. I actually tried to at the hospital the night he was admitted!

It’s an absolutely horrible feeling as a parent to know you cannot relieve your child of the heavy, lifelong burden that is a chronic disease. When I was going through my grandmother’s files this summer, I found an article announcing the bionic pancreas that would soon change the lives of those with T1D. The article was from the late 1970s, when her son, my father, was almost 30 – long out of the house, married, and with me on the way. Holding that article in my hands, I felt so close to my grandmother. It was tangible proof of our connectedness as mothers worried about their son’s health and wellbeing and how that worry never leaves. My grandmother has been dead for over 25 years, but it felt comforting to know she gets me.

Here’s what’s been “wonderful” this week: I got to watch my 16-year old daughter celebrate her birthday with a large, coed friend group that beats any that I could have hand selected for her. Avery had a lot to lose when we moved to Cincinnati 4 years ago – her role as the ringleader of the neighborhood pals, her spot on the town swim and softball teams, which our school did not have for middle schoolers. Watching her navigate the transition with such aplomb has been truly wonderful.

But not so fast – back to horrible: Owen’s endocrinology appointment yesterday, where the doctor really wants him to consider a CGM (continuous glucose monitor), a device that is attached to him 24/7 to monitor his blood sugar levels. A device he does NOT want.

I’ve tried to teach both kids that they are in control of their bodies. I imagine that control is particularly important to Owen, who had no say in T1D setting up camp in his 9-year old body. If he wants to prick his finger 5+ times a day and give himself insulin injections rather than have technology permanently attached to him all day long, so be it. But the data we can get from that CGM would be much more helpful in managing his disease than the data we get from 5 finger sticks a day. As his parent, isn’t it my responsibility to be the adult and have the bigger picture in mind, something 14-year olds aren’t exactly known for, much less able to do?

And, not to end on a bad note, back to wonderful – nothing reminds you that your life is not your own like being a parent. To many, that indeed sounds horrible, but, really, what a wonderful sense of responsibility and purpose. By providence, these children are mine and I am theirs, and we are figuring it out – each horrible and wonderful step of the way.