My editor is fond of saying to me that a good story allows the reader to see both the forest and the trees. This past weekend, my family was fortunate enough to attend a family retreat for those with children with type 1 diabetes, at the Double H Ranch. Attaining the perspective my editor suggests became the paramount element of the experience.
Close to 30 families, with various amounts of children with or without diabetes were in attendance, along with volunteers and staff. Double H, which exists to provide fun for those with disabilities, was shockingly not all about sitting around and talking about the struggle with it. Rather, the focus was providing an opportunity for children and their families to just hang out and enjoy in a safe and supportive environment. And that environment, that forest, was everything.
I have been around other type 1 camps and am, therefore, used to the sounds of glucose meters and pumps sounding off, and people calling out numbers like some strange lottery. The rest of my family is not. For my wife it was at first disconcerting, because she thought it was either Kaygan or me, but she then quickly realized it was the entire room. That moment when you realize we are “all in this together” is not some cliché, is so affirming, yet at the same time, kind of heartbreaking.
Watching my daughter not shy away from testing her blood or dealing with her pump was the key for me. It was evident that she realized she didn’t have anything to hide, because no one in the room felt awkward by her presence and her disability. Because, sadly, in her regular life, people do. Every. Single. Day. Just as they do in mine. So, lifting that layer of discomfort, if only for a couple of days, was a major reward.
And so was having the opportunity to talk about diabetes, amidst conversations about regular life. The beauty of the weekend was that everything was loose. The children played and had their own silent awareness of the discarded stigma, while parents gathered to chat about the minutiae of the disease. We learned form one another via our shared experiences. And that is powerful. Often at support groups people are hesitant to open up, to admit just how much of a hard time they are having at handling things. That wall comes down when you are able to hang out with others and not have to deliver monologues that summarize your experience, but rather weave yours into conversations that ebb and flow around the myriad aspects of the disease.
Because type 1 is a multi-layered disability. A common question I receive is the following: What affects your disease? I’ve boiled my answer down to this: Living. On the surface it may seem crass, but if you take a moment and consider, it is the only reasonable answer. Every little thing we do, from the amount we sleep or eat or move, affects how we manage this disability. And that underscores it all. We live, in spite of this disability that many do not understand or confuse with type 2. We live, and we strive for the best “normal” life under tough circumstances. We live, and we feel shame and guilt, even though we know it’s not our fault, and that there’s no one to blame.
And after this weekend, I’m glad to know that my daughter has a sense of that “we.” Everyone with this, and with any other disease or disability, is at the same time both incredibly alone, and equally surrounded. Sometimes just knowing that others feel what you feel is enough. Often, seeing is believing.
So thank you Double H, and Pump Wear, and all the staff and volunteers, who allowed us to see the forest for the trees.
––Carrie, Eric, Grace and Kaygan Devine
*For any parents from the weekend who are reading this and want to find This Side of Normal, just click on the book title for options*