I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.
And, of course, it is by no means meant to offer medical advice.
Wednesday, July 19, 2017
We recently got home from Children With Diabetes Friends For Life 2017, and like our journey with diabetes, our journey with the conference has shifted as well. I will never forget the first Friends For Life conference we attended. Jess's diagnosis was still relatively new, and we were still so emotionally raw. I will never forget the feeling of arriving and being immersed in this island of respite....surrounded by people who truly knew the challenges of living with T1D. The joy and relief of not having to measure food, and yet having everything there and labeled. The unexpected bittersweetness of watching my husband, who had lived alone with T1D for so long, weep with joy as he connected with other adults that shared his journey. The gratitude I felt to this organization and conference for not just supporting Children with diabetes, but all with diabetes. This conference was life changing....not just for Jess, which I expected, but for each and every one of us.
We haven't missed a conference since. The friends we met there have become our Friends For Life. They surrounded and supported us when Jess's twin needed brain surgery. They sustain us through text messages and phone calls throughout the time in between conferences when carbs are not automatically measured, and where there are not shared looks of knowing after a night full of dexcom alarms. They have led us to wonderful, amazing colleagues and new facets of our careers.
This conference led to my celiac diagnosis. I had always ignored symptoms, wondered why I was sick so often, and chalked it up to stress. At the conference TrialNet is on site, and Dr. Alessio Fasano conducts his research examining the increased prevalence of celiac disease among those with T1D and their families. I wanted Jess's twin tested, so had my blood drawn as well in order to encourage her. I was more than surprised when it turned out I was the one who actually had celiac. And, once again this conference was life changing.
I was so thankful to feel better. The first trip to the grocery store after diagnosis was similar to when Jess was diagnosed....reading every label carefully, the focus on the nutrition label rather than on the joy of discovery new foods. It was a new journey.
Like Sean for so many years, I was convinced I didn't need support. I mean, after all, this was just celiac. In a family with T1D and brain surgery, this seemed like but a teeny bump in the road. And, in some ways it is. But, I realized at this year's conference that like any chronic condition, it too takes a toll. Being invited to a friend's house...stressful. Traveling...stressful. Eating out...stressful. Having to pack and plan for every meal during long days at work...stressful. Confusion with people thinking I am choosing this gluten-free lifestyle rather than realizing that it is an autoimmune disease that I didn't ask for or want...stressful.
This year's conference was life-changing for me in a new way. Perhaps it is that subconsciously I was looking for support and saw and heard things with fresh eyes and ears. Perhaps I am in a place with Jess's diabetes that it isn't as all consuming as it once was, and therefore my long suppressed need for self-care is surfacing. Perhaps it was serendipity. But, Friends For Life 2017 was an island of respite for me in new ways.
This year I appreciated the designated gluten-free buffet area more than ever. And, for the first time sat next to a friend from the conference who also has celiac. It was so refreshing to discuss which gluten free foods were delicious. I felt such a relief when dining out not to be the only one who had questions and needed a gluten free menu. It was comforting and enlightening to watch how he handled dining out with celiac, and it made me feel more comfortable in my ability to do so and not feel I was being high maintenance. When another mom to a T1D and celiac, asked how I was doing with my own celiac and shared with me that her child would give up the celiac before T1D if given the choice, I suddenly felt like it was ok that at times I think this new forced lifestyle is hard.
Like Sean so many years ago with diabetes, I realized that maybe I do need doses of support in living with celiac, even though I feel like I am doing it so well without.
I returned from this conference filled with gratitude and rejuvenated as I always do. But, this year with new perspective. This conference doesn't just provide much needed support to those living with diabetes and their families. It also provides much needed support and respite to those living with celiac as well. The friends I have met are truly Friends For Life. But, Children With Diabetes is so much more than that...it is Adults With Diabetes, and Celiacs With and Without Diabetes.
And, it is truly life changing.