St. Louis

I spent this weekend in St. Louis as a speaker at a JDRF Chapter retreat. It was a wonderful experience and, for one moment, it was like looking into a mirror through a time machine.

A two year old boy perched on his grandfather’s shoulders, his older sister looking up at me from behind a picture book. The little guy recently diagnosed with type 1, the family finding their way. I couldn’t help but see us seven years ago.

Was Benny ever that small? How did we poke his teeny little fingers or find enough space for an insulin pump site?  I chatted with the family about the unique difficulties of a toddler with type 1. About diapers and childcare. About never knowing what a two year old will actually eat and figuring out whether that’s a high blood sugar-thirst or just an I’m hot and I’m playing-thirst. This little guy already had a CGM! That’s a great tool for a toddler. I was always worried that Benny wasn’t really napping, that he  was going low and passing out.

I met families with children of all different ages, of course. This chapter uses name tags with their JDRF Walk team names, which is really cute. I met Brian Coffey, dad to three kids with type 1, so Three Coffees, No Sugar. John, whose daughter was diagnosed as teenager, now a thriving college student, was Let them Eat Cake. So many more whose names I didn’t catch.

I was on the bill with Ironman Triathlete Jay Hewitt and author & journalist Moira McCarthy, two people I’ve followed in the diabetes community and who I admire very much. And yes, I did snap this picture almost to pinch myself I was on the same card as them! (how cool is that?!)

Jay Hewitt is amazing. He talks about the challenges type 1 diabetes poses during the Ironman (140 miles of swimming, biking & running). He somehow takes this incredible athletic achievement (he’s done it 15 times!!) and makes it relatable to everyone in the room. “Make the bad thing that happens to you the best thing that ever happened to you,” he told us. Use diabetes as a challenge.  He says he always saves one last gasp of energy at the finish line to “step on the neck of diabetes and tell it, ‘you’re messing with the wrong guy.’”

Moira McCarthy turned what could have been a dry research update into a talk about life and love and diabetes. So many sweet faces and compelling stories. I had connected with Moira online but it was our first time meeting. After 15 years as a diabetes mom, she seems unflappable. But I also think she’d be the first to tell you flap happens.

My main presentation focused on the importance of diabetes connections. Of finding other people who get what we go through and trying to avoid feeling all alone.  I also did a breakout session on diabetes and humor. I did have some kind of weird allergic thing Sunday morning so I probably looked like I was crying (not really such a bad thing at a diabetes conference where it’s pretty easy to get emotional!).

We talked about technology and fundraising and what’s next. We signed books and made new friends. But my thoughts kept going back to that little boy on his grandfather’s shoulders. That was us. Scared, confused and feeling adrift in a new world of medical jargon and constant monitoring. I’m grateful, seven years later, to have found some balance in the shifting world of diabetes management. I’m even more grateful to have found a place in the diabetes community.

JDRF St. Louis asked me to come and speak this weekend and paid for my hotel room. Animas sponsored me and paid for my travel. I decided what to write and paid for my coffee.