Yesterday afternoon I was lucky enough to be back at Clara Barton Camp for Family Camp, speaking with some of the parents (and a good number of the kids) about using the Internet for diabetes information. I’ve had similar discussions with other groups, but each time there’s something new to learn, and something cool to share.
Oh wait. But I’ve never done this session with my daughter padding around the room and pointing at people, asking “What’s daaaaaat?”
This discussion was put on my calendar recently, so finding a babysitter quickly wasn’t working out for me. I mentioned to Abby, who works as the Charge Nurse at CBC, that I may not be able to make it.
“Don’t worry. Bring her – I’ll watch her.”
“Seriously? But it’s not exactly in your job description at SUM …”
“Not a problem. I love kids.”
So while I participated in a discussion with the parents and kids, Abby and BSparl hung out.
It’s hard to recap a discussion that goes in a million different directions; it’s like tracking blood sugar trends. The parents of kids with diabetes are always amazingly insightful, emotional, and open, and their kids are nothing short of amazing in their honesty about diabetes.
The session was very informal and open-forum style, with everyone gathered in the Great Room, chairs circled like wagons. We talked about making the decision to share personal health information online, and the personal choice to disclose your name/kid’s names/cat’s names. We talked about making clinical research accessible and digestible for both parents and kids, letting even the younger kids own and understand information about their disease. And, of course, we talked about social networks.
“There are niche communities even within this niche community. Back when I first started blogging, I wanted to find other 20-somethings who were going out on dates, finding jobs, and doing stuff, you know? And now, I want to connect with other parents who have diabetes. There’s truly something for everyone, but if you can’t find what you’re looking for, it’s easy to create for yourself.”
The diabetes online community wasn’t created because someone paid us or because a big company tried to wrangle us all into the Internet to share our stories. The DOC was borne out of necessity. The emotional and psychological parts of diabetes management sometimes require more time and attention than blood sugars and doctor’s appointments because you need to have your head truly in the game to manage this demanding disease. This kind of support is necessary, readily available, and part of a true patient revolution. (And it appears the revolution will be blogged!)
Even though I feel very supported by my husband and family, and by all of you guys in the DOC, diabetes is always showing me that I’m never done learning. I’m grateful for the many support outlets available to me, and I’m inspired by CBC to help the DOC reach more families who could use someone to lean on. We’re in this together, and every time I visit camp or hang out at a support group or conference or meet-up, that point is driven home. People with diabetes are some of the most accepting and supportive people I’ve ever met.
… besides, there’s something so awesome about bringing BSparl to camp, and watching her point to other people’s pumps (“Puuuuuum!”) and exhausting herself playing with her mommy’s friends.
(Thanks for watching her yesterday, Abby!! She fell asleep as soon as we got into the car.)