Diabetes Blog Week starts today! Learn more here at Bitter-Sweet. Today’s prompt is to write about the diabetes causes and issues that really get us fired up.
What gets me fired up? I’m passionate about making connections with other D-parents
We’re in this lousy club together, but sometimes we feel very alone. Hovering over my child’s bed in the dark, fumbling with a flashlight and trying to figure out if 95 is ok or why the hell he’s 287. Who understands those things? Only us. We need each other. We need to connect for support and information and so much more.
Of course, your medical advice should come from your child’s doctor and diabetes educator. That’s not what I’m talking about. I’m talking about the things you only learn from living this every single day. The been-there-before-knowledge from other families that gets you through.
How do you find each other? This is a bit tricky, but here’s how it happened for me. When Benny started kindergarten, he was the only child with diabetes at his school. By the end of first grade, there were four. I left a note with the school nurse that if any of the parents wanted to meet, I was game. We four moms went to dinner together and had a blast. I talked about it on Facebook and I heard from other local parents. We all met again a few weeks later. Now there are almost 20 families in our little group. We went bowling together back in February:
I don’t like the term support group. This isn’t about pulling up some folding chairs. Going to dinner, grabbing a glass of wine, seeing how alike and different we are really helps. Hearing the other stories from these parents gives me perspective and reminds me that if something isn’t working, there’s probably another way.
For example, Benny was little (he was diagnosed at 23 months), I didn’t know there were different types of skin prep. The kind we got from our diabetes supply company didn’t work very well. There was always a 50-50 chance Benny’s inset would slide off in the bathtub or the pool. After a disastrous day at a water park, I finally asked around . Who knew there were so many choices? You could order this stuff from Amazon? We switched (to Skin-Tac, btw) and life is much, much better. That’ s just one way connections have helped.
I started a Facebook group for local parents of T1D kids as well. There are a lot of diabetes support groups on Facebook, but I like the idea of being able to meet in real life, so I limited the geography. There’s a big difference in meeting and talking face to face. It’s also nice to be part of a group that can help find anything from a baby sitter to a backup meter in our city.
My change-the-world dream is to make this my full-time job. I’d travel the country and set up these diabetes family connection groups. No fund raising, no pressure. Just help and support from peers who need each other. Who’s in?
Shameless plug: I do an actual presentation about this. It’s called “Diabetes Connections: Why We Need Them, How to Make Them.” Love to come speak to your group about it.