Just let the diagnosis be part of the fabric of your lives, not the focus. – Themighty.com
At first, I thought it was just another one of those futile memes being shared – another quote meant to inspire that actually does nothing but remind you that you’re wasting time on Facebook. But this one – for a change – struck me. It spoke to me so much I even shared it with a one-syllable retort: “How?”
How does one actually pull that off when you have a disease that requires constant monitoring and care? With diabetes, it’s easy for the diagnosis to become all you are.
And yet, as my daughter, family, and I lap our way into our 18th year with Type 1 diabetes in our lives (Lauren was diagnosed in the fall of 1997, a tiny little kindergartener), I feel like we’ve somehow managed, for the most part, to figure out that “how.”
Some of our success came from our amazing medical teams over the years, some came from other families I met, and some came from what just seemed to make sense.
Most of it, though, came from my determination (which was quite honestly fueled by my daughter’s determination) NOT to let diabetes win all the time. Could we stabilize blood sugars for good? Nope. Could we remove the need for constant oversight and intervention? No again. But what we could do was embrace a rich, exciting and somewhat “normal” life, one where diabetes doesn’t always have the final say.
My first goal in adjusting to life as the parent of a child with diabetes was to always put diabetes second and life’s moments first. We always have been—and always will be – an active family. We travel. We ski,swim, and play in long, hot tennis tournaments. Our kids played out in our yard with other kids for hours. They climbed trees and rode bikes. And I did not want that to change. So from the start, instead of asking “if” I always just figured out “how.” We told the kids from day one with diabetes that any time they asked us to do something, our answer would not be based on diabetes. If it was something we felt they should or could do, we’d fit diabetes in around it. (Notice I say “the kids” even though only one of my children has diabetes. We embraced diabetes as a family thing from the start.) So, diabetes always came into the picture once we’d chosen the landscape, not the other way around.
I also had to be careful – from the start – with my language. I work with words, so I have a heightened awareness of how much they matter. And our first endocrinologist, told me from day one: every way you say something impacts your child. Think about how you message. Because really, if I gave her a glucose tab in the car, or even a juice box at 2 a.m., I was not “saving her life.” Rather, I was helping her treat her diabetes. I did not want to raise a child with the notion that she was walking around on the edge of death, or that she constantly needed someone there to “save her life.” I worked at saying things in a nondramatic way. “You’re low? Okay. Glucose tabs or juice?” And life goes on.
I did fall short in some ways though, and I learned this a little late in the game. But after a world-class diabetes psychologist shared her take, certain things started to make sense. For example, when my daughter first injected insulin by herself I believe I bought her a pony, a Ferrari, and hired Gwen Stefani to sing at the celebration event. Or something like that. What I’ve learned over the years, however, is that, in fact, the tasks a child has to take on to live with diabetes should be treated just like that: simple tasks, part of every day, that need to be done without much fuss. Of course, it’s fine to say “good job!” and “we’re proud!” but I believe I should have responded to diabetes accomplishments the same way I did to other tasks, like making her own bed in the morning.
Still, diabetes is too volatile to ever truly feel mundane. However I want to spin it, the fact is, my kid grew up with a massive weight on her shoulders. But she did make it look easy. And she still does. Her coworkers have no idea that some days she sick-high on the train on her way there (waiting for a correction to kick in). Her nightlife buddies have no clue their pub crawl demanded her to plan out as much as 24 hours before and after to make it work. The folks cycling along side her on the bike trails of DC have no idea she’s watching her CGM and making tweaks every few miles to make that ride a simple success.
And they don’t need to. They see what I’ve always wanted her to be: a fun, smart, hard-working young adult who just happens to have diabetes. I’ve spent the last 18 years working toward that goal, and I think we’ve reached it.
That’s our “how.”
