Madeline and I attended our first Friends for Life conference last week, sponsored by the Children with Diabetes organization. FFL is an annual international conference that offers opportunities for children and families living with diabetes to gather for the purpose of learning, sharing, laughing and growing. being in Orlando in July is another tale… but worthwhile overall, for the FFL experience.
At the FFL conference, I had the opportunity to attend a variety of sessions focusing on the scientific, technological, medical, emotional and social aspects of living with T1D. I listened to amazing findings of the research team led by Dr. Alessio Fasano of Massachusetts General, whose discoveries about the role of intestinal permeability and its relationship to the development of many kinds of autoimmune disorders are paving the way for treatments to potentially prevent or reverse the onset some of these disorders. I attended three different sessions with Gary Scheiner, a renowned professional whose experiences as a person with T1D and as a certified diabetes educator have revolutionized the approach to the effective management of diabetes. His guidance on integrating knowledge about the glycemic index in everyday nutritional choices and treatment decisions, interpreting and applying data from continuous glucose monitoring to improve daily and longer-term outcomes, and using strategies for avoiding and treating hypoglycemia was critical to my growth as Madeline’s artificial pancreas. And speaking of AP, I had a close-up view of the most important AP technology in development and trial, led by Dr. Ed Damiano of Boston University: the iLet. Overall, the information I learned was so dense and so transformative that it will take me quite a while to absorb it and integrate it where I can.
Even with these amazing learning opportunities, one has powerfully resonated with me: the keynote address, delivered by Andrew Deutscher, a father of two sons, one having T1D. His focus was on the importance of the personal narrative–the stories we tell ourselves and others that help us make meaning of our life’s experiences. The importance of Story is one with which I’m well familiar, for it’s been a cornerstone of my professional work for the last 19 years. But Andrew’s perspective on the importance of personal narrative in making sense of, and finding purpose through, a life with T1D was particularly profound. His words stuck with me throughout the conference and beyond, as I ponder the narrative I choose to make as a mother to a child with T1D. As well, it’s got me thinking hard about how Madeline assembles and tells her own narrative–one that is authored bit by bit every day, regularly revised, and shared through the way in which she chooses to interact with the world.
Am I modeling a story of positivity, strength, courage, resilience?