I wrote last month about our opportunity to attend ConnecT1D’s Diabetes Family Camp in Seattle, and how excited we all were for the weekend. Evie has gone away to diabetes summer camp for the past couple of years on her own, but this was the first camp that we’ve attended all together with other Type 1 families. We were ready for an adventure!
We skipped their half day of school on Friday and made our way leisurely through Seattle (“look, Mom, the Space Needle!”), playing a little along the way, and then headed North to the retreat center. After we checked in, met the camp directors, and found our cabin (double bunk beds!) we gathered in the meeting room with the other families for orientation. Then off to bed for a good night’s rest.
The morning started off with a bang, with a keynote presentation by a family psychologist that had me tearing up in my seat. The topic was parenting and diabetes and he touched on standard issues like discipline and family dynamics, but also addressed more tender topics like grief and loss. He asked us to reflect on our diagnosis stories and my chest tightened. We have two of those; they are different, but equally painful. Being in a room full of other parents who I knew shared similar stories and experiences made it a little easier to confront those memories and emotions.
Other sessions that day included a research update, a panel to discuss diabetes in the school environment, and a small group session in which we all shared tips and for living and coping with diabetes in our families. This hour or so of more intimate and open discussion was my favorite part of the weekend. Groups included caregivers with newly diagnosed kids, some who have weathered years and years of diabetes in their families, and everything in between. My group even included another set of parents that had two kids with diabetes.
Even though I’ve been parenting diabetic kids for four years now, I was a sponge, soaking up information and experience like I was a newbie. It was so comforting to be surrounded by other parents who Understand—other adults who have to navigate school policies and holiday parties, wake up multiple times during the night to check blood sugars, and learn to live with a complicated disease that has unpredictable and ever-changing effects on their kids and families. We could all look at each other, recognize that underlying burden of physical and emotional fatigue we wear like an old sweater, and say “I get it.”
I hope that my kids had similar feelings of solidarity. Evie and Luke go through most of their daily lives being the only kids with diabetes, singled-out by blood sugar checks, trips to the health room, and well-intentioned but isolating comments from teachers (“Please avoid sending sugary treats because we have a Diabetic in our class…”).
I expect that it’s a relief to be in the company of other kids who have to stop and pull out a medical device before tearing into that mid-morning granola bar and bag of pretzels. And whatever your age, its fun to swap “war stories.”
This one time I had a vampire cannula and my tubing totally filled up with blood!!
Don’t you hate it when your mom pushes too hard on the lancet and your finger is still bleeding three hours later??
One morning my school served french toast sticks that had 300 carbs per serving and I had to do TWO injections just to cover!! (Er….WHAT??)
Siblings of kids with diabetes also need peer support, and I was happy to see Will interacting and making new friends. I doubt, at eight years old, that he engaged in any conversations specifically about his feelings and experiences being a middle child sandwiched in between two kids with major medical issues, but he certainly saw that he wasn’t alone, and that was the whole point of camp. So that none of us would feel alone in our circumstances.
I hope to go again next year and see many of the same families I met. Evie collected some e-mail addresses and is already busy keeping in touch. And Will asks me nearly daily if I’ve heard from his new friend’s mom yet.
But the most important take away for me was the realization that support and connection with other people who live with diabetes is vital. Not only to share information and resources, but to have people that can laugh with you when you make jokes about infusion sets and low blood sugars, panic together at the empty coffee pot, and not bat an eye when you cry over breakfast conversation. People who “get it.”
See you next year!