When a child is diagnosed with diabetes, some say the entire family suddenly lives with diabetes, because of the way their lives change from that point on and how they must adapt to a “new normal.” In many families, this may also include the grandparents. In honor of Grandparents’ Day, I’d like to introduce you to Jay Rosenfeld, who is very involved in his grandchildren’s lives, including Parker, who lives with type 1 diabetes.
Jay is a dedicated family man. Living in Houston, he and Babs try to visit their granddaughters in Austin once or twice a month. And every summer their two granddaughters spend a week with them in Houston, hanging out at the pool, visiting museums and doing other fun activities.
In 2011, just before one of these visits with his then 4-year-old granddaughter, Parker, Jay’s daughter had mentioned that Parker was thirsty, hungry and tired a lot more often than usual. At the end of the week’s visit, they brought Parker back to her parents’ house, and Monday morning her parents took her to the doctor, where she was diagnosed with type 1 diabetes.
“We immediately jumped in the car and drove to Austin for two things,” Jay said, “to support our daughter and son-in-law, Julie and Garrett, and to be with our other granddaughter, Kendall. During the day we were at the hospital going through the same diabetes training that my daughter and son-in-law went through, and we stayed with Kendall at night so her parents could stay with Parker at the hospital.”
Jay refers to himself and Babs as “the support cast.” “Our goal was to support them emotionally,” he said, “to let them know we were there to help them. Our absolute biggest concerns were for my daughter and son-in-law’s well-being and helping Kendall begin to understand and deal with her sister’s diagnosis.”
About six months after Parker’s diagnosis, Jay and Babs met and had lunch with the Executive Director of JDRF’s Houston office and a representative from JDRF’s national headquarters. They received an encouraging update on the many research projects for type 1 diabetes.
The next morning Jay woke up wondering how else, in addition to financial support, they could get involved in diabetes education and advocacy. “I realized there were other grandparents in this situation and it really started me thinking about being a mentor and having a peer support group,” he said. “Our family is proof that it’s not the end of the world; it’s the ‘new normal,’ and you learn how to adapt to it.”
Jay brought his idea about a grandparents’ program to the Executive Directors of the Houston and Austin JDRF offices. “They both liked the concept, realizing the value grandparents could bring to their children and grandchildren as the result of a life-changing event.”
In March 2013 after months of planning, the Austin JDRF chapter had an all-day training session and offered to let Jay lead a breakout session for grandparents. “They told me ‘It’s your agenda, do whatever you want.’ I was really concerned we’d have three or four couples. We ended up with 22 people at the initial meeting and a lot of active discussion. As a result, we started an email group sharing follow-up notes and soliciting stories and news from the members.”
At the Austin conference, Jay met Manny Hernandez, founder of The Diabetes Hands Foundation and TuDiabetes, one of two communities within the organization. They chatted about Jay’s session. “About a week later, Manny sent me an email that suggested I start a similar support group on TuDiabetes,” Jay said. “I liked the idea of having a place to provide support in between the periodic JDRF meetings, an online community where somebody can seed a discussion about caring for their grandchild or their personal worries and concerns. So this spring Babs and I put together the foundation materials for the community, called it ‘Grandparents of T1D Kids,’ and posted it on the TuDiabetes website.”
At this point about 20 people across North America from British Columbia to Florida have joined the online group. Jay continues to promote it to a growing email list of more than 140 members. There has been some reluctance from grandparents to participate in online forums. “What I’m finding out is a lot of grandparents don’t want to do any more things on the Internet than they have to,” he said. “If I meet face to face with someone, it’s rare that I can’t get them to talk and engage, but it’s not so easy for some to do it on the Internet. But I think it’s important.”
Since this spring Jay has promoted ‘Grandparents of T1D Kids’ to the Barbara Davis Center in Denver, Children with Diabetes, JDRF chapters in Dallas and Orange County, and others. With JDRF’s help, some chapters are beginning to include a grandparents’ flyer in their Bag of Hope that they give out in hospitals to families of newly diagnosed children. The parents can then let their parents know about the online grandparent community. “We’re just trying to find as many marketing channels as we can to focus people’s attention on the important role grandparents can play in the ‘new normal’ and how we can support each other as a peer group,” he said.
Jay’s dedication to helping not only his own family, but providing support and serving as a mentor for other families is simply awesome. His passion and commitment are to be commended. My thanks to Jay for sharing his story here.
All the best,
Disclosure: Jay Rosenfeld received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.