Dispatches from Friends for Life
A D-family finds itself surrounded by a supportive network of other families touched by Type 1 diabetes at the Orlando conference.
Somehow we made it. We planned, we saved, we applied for scholarships, and all that work payed off when we arrived at the Children With Diabetes 2014 Friends For Life Conference in Orlando, Florida.
We drove some 1200 miles with a baby, a pre-teen, and 2 girls with Type 1 diabetes to get to this four-day event, and it was all worth it. As soon as I walked in to the hotel, I was greeted by an old friend and fellow D-dad. This is the standard experience of these conferences; it’s hard not to make deep, lasting connections with other attendees, all whom share the T1D experience.
The next morning we registered for the conference and got our bracelets. People with Type 1 Diabetes get green ones, people with Celiac get yellow, and non-diabetics like me get orange. After we registered, we headed straight to the pool to have fun the day before the conference sessions started. Needless to say, we saw a lot of green bracelets at the pool, and my girls made a few new friends.
We caught up with old friends and bumped into leaders of the Diabetes Online Community, including Tom Karlya from diabetesdad.org and vice-president of the Diabetes Research Foundation Institute; like me, Tom does double-duty with two T1D kids. We also ran into Kerri Sparling of 6 Until Me; if you’ve never read her blog about her T1D experience, you should check it out. The family also got to meet Manny Hernandez of the Diabetes Hands Foundation, a master organizer of the Diabetes Online Community.
Wednesday rolled in and I kicked off the conference with a Master Lab, a session put on by the Diabetes Advocates and the Diabetes Hands Foundation. We were there to learn about diabetes advocacy and were given a tidal wave of information for some 8 hours. I won’t recap everything, but the big takeaway was that there’s a lot more we can do as diabetes advocates. Also, the Diabetes Advocates website soon will add an advocacy hub, so you’ll want to keep an eye out for that.
The sessions after the Master Lab were great, but there were so many from which to choose. My wife and I did the only logical thing: we split up and soaked in as much as possible. Here’s a recap of what I learned:
The first session I sat in was about positive caregiving; it was facilitated by Dr. Korey Hood, a pediatrics professor at the UCSF School of Medicine (who has Type 1 diabetes), and Dr. Marisa Hilliard, a child psychologist with the Baylor College of Medicine. They talked about avoiding the blame/shame cycle and the burnout that comes from chasing perfect numbers. One huge idea that resonated with me from that session was they suggested that the better the marital relationship, the better the diabetes care the child gets. That’s easy to say, but hard to achieve when life and diabetes get stressful. They recommended finding ways to slow things down when things get crazy.
A session about family teamwork touched on many of the same subjects of dealing with stress, resolving not to blame yourself or others for bad numbers, and the importance of setting realistic goals. I couldn’t get burned out on talking about caregiving burnout, so I went to another session on it. Many parents and adults with Type 1 spoke up, and I could see from their faces that this disease can take its toll. A big lesson from that session is it’s important to allow space to recharge our batteries as caregivers.
I also got to listen to Dr. Ed Damiano of Boston University, the engineer behind the dual-hormone Bionic Pancreas that made headlines. It was very exciting to see the updates from the clinical trials, including the raw numbers and spreadsheets of the data. Soon Dr. Damiano will undertake a clinical trial of the bionic pancreas system for children under 11 years old; results will be released in September. He is aiming for FDA review in 2017.
Friends For Life is so much more than presentations, however. It’s also about making new friends and seeing old ones. For example, I met a couple who is raising triples, one of them with Type 1; they both write the blog Inspired By Isabella.
The title of the conference says it all: this is about the friendships, connections, and support you find here that you can’t find anywhere else. It’s about getting an unexpected hug when you’re dealing with a bad BG. Everyone at the conference just knows what you’re going through; they understand, and that understanding warms your heart.
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