This month we are highlighting the JDRF T1D Connections Program and the impact is has on our community!
Read Emily and Evy’s T1D story below, and should you wish to be connected to a JDRF Outreach Volunteer or learn more about the T1D Connections program, contact Betsy Paffmann, Sr. Manager, Community Engagement at email@example.com.
I suggested we meet at Argus Farm Stop where Evy could play with the toy trucks and stuffed animals that the owner offered to the smallest customers. Evy was almost two years old and it would be a miracle if we made it through coffee without a toddler meltdown or a Dexcom alert. Since her diagnosis seven months before, I had learned to stuff a diaper bag with snacks, juice boxes, a backup glucose meter, and insulin.
Somehow this was my first time sitting down with another parent of a child with Type One Diabetes. In the immediate aftermath of Evy’s diagnosis at 13 months old, we were flooded by urgent questions that needed answers. How to correctly dose a child who was just learning to eat solid food? Where on her 25-pound body could we find room for all the injections and medical paraphernalia that she would need? How do we shelter her from the stress we were experiencing as parents? Our daycare would no longer provide services for her and I had to step down from my job: a job that I had spent seven years getting advanced degrees to do. We decided to temporarily leave our apartment in NYC and come back to my hometown of Ann Arbor, MI to get more family support. It was then that I was put in touch with Elizabeth Caswell who proposed we meet up for coffee.
Here is where I should admit that up until that point, I had avoided meeting other parents. Every time someone suggested I talk to another parent I would ask how old their child was at diagnosis. They usually said 7, maybe 5 at the youngest. And I would say, sure, please send me their info, and then I would neglect to follow up. Having a child with an illness or disability can be isolating, in general, but the fact that Evy was diagnosed early was double alienating for me. The questions that I wanted to ask often didn’t apply to parents of older kids. I wanted to know how they managed childcare, tips for calculating carbohydrates for a picky eater (and occasional food thrower), and how to prevent a toddler from pulling out their Dexcom sensor or insulin pump. The challenges of having a toddler were different, not necessarily harder, but just of a different nature than the challenges of a teenager.
Elizabeth was waiting for me on a sofa as I clumsily navigated the stroller through a narrow doorframe. I let Evy loose to dig through the toy bin and I sat down with an involuntary sigh. The first thing Elizabeth asked me was about leaving my job and, for some reason, I felt an instantaneous sense of relief. I would not need to pretend that I didn’t have a life before the diagnosis or that there were not parts of me that existed outside of my mom role. She told me about her teenage son not only in terms of his diabetes but as a person with interests and aspirations. And she told me about the joys of a “peanut butter spoon.” The perfect snack for a kid with T1D. I left the conversation feeling more open-minded about connecting with other parents. Evy would not always be a nearly-two-year old. Someday she would be a nearly-18-year old and there were deep resources out there among parents who had navigated waters that I had only dipped my toes in yet.
Now we are back in NYC and the world is a very different place. No more meeting for coffee or allowing a child to rummage through a collective toy bin. I have a nearly-three-year old and she is showing more and more of her personality every day. Tonight, she asks for a “peanut butter spoon” to have with her book before bed.
– Emily Bloom, Evy’s mom
JDRF T1D Connections Program
The T1D Connections Program is a resource available to the T1D community that connects individuals to others who understand what it is like to live with T1D. Through these connections JDRF volunteers provide emotional support and guidance while also helping families and individuals to become acquainted with JDRF in a meaningful way.
Individuals are matched in their time of need with an Outreach Volunteer (OV), who can relate because they too have a personal connection to the disease and understand the challenges at different stages within the T1D journey. The T1D Connections Program serves in fostering early meaningful relationships as well as ensuring newly diagnosed individuals/families are aware of all that JDRF has to offer in terms of both resources and opportunities to positively impact our mission.
JDRF OV’s play the very important lead role in building early relationships with newly diagnosed individuals/families– welcoming, supporting, guiding, and connecting them to the larger T1D community and JDRF. This is accomplished through relationship building activities throughout the first twelve months post-diagnosis, including making introductory phone calls, sending periodic emails, making invitations to attend and meet at chapter events, and identifying opportunities for further engagement as advocates, volunteers, and fundraisers.