Guest blog by Agnes Rayome, pictured with daughter Graciela at the Nashville JDRF Walk. Agnes serves as the chair for JDRF Middle Tennessee’s T1D Connections, formerly known as the JDRF Family Network.
My daughter Graciela was diagnosed with type 1 diabetes (T1D) six years ago at age 9. At the time we lived in a small town in northern Indiana. No one else in our family has T1D, so I was completely naive about what we were about to take on.
Our first struggle was with the school. There were no other students with T1D, and being a parochial school, they didn’t have a school nurse or much interest in being hands-on with her diabetes management. I had no idea how to deal with this, so my only option was to go to school every day to give Gracie insulin at lunch, and at any other time during the day if there were extreme highs or to treat bad lows. I couldn’t see how this would work in the long run, and I was a nervous wreck.
The cafeteria manager told me of a former student she remembered having diabetes and wearing an insulin pump. Salvation! I would just track his family down and find out how they managed. So I did, but they didn’t answer my calls or emails. I was so disappointed! Then one of Gracie’s classmates told her of a neighbor she knew that had diabetes. We met and visited with the family, saw an insulin pump for the first time, and realized that we would eventually become used to our new normal and would survive.
I also went online and discovered a large group of parents based in Chicago that held T1D family and educational events. We did the two hour trip a couple of times to attend their meetings, and we learned a lot from their speakers and just by interacting with the other T1D kids and their parents.
We moved to Nashville the following summer and soon met the Gradys, a local family living with T1D. It turns out they were very involved with the JDRF’s Middle Tennessee Chapter, and so began our adventure. We participated in our first Walk to Cure diabetes, I started volunteering at the office, and before long I became co-leader of the Nashville/Brentwood parents connection group, and eventually Outreach Chair.
Interacting with other families has kept me balanced – I may always like to be on top of the latest and greatest T1D research and technology, but my fellow parents remind me to breathe, and that despite the latest gizmos and the struggle for the best A1c, there’s more to life than obsessing about diabetes.
Do I still need my hand held as we trudge through life with T1D? After 6 years, not really. But there are hundreds of kids in our area diagnosed every year. Many of their families are just as lost, confused and overwhelmed as we were. Or maybe they just want to sit and chat with others that “get it.” So I’m here for them, as are all the other local group leaders and mentors.
Many of the newly diagnosed families don’t realize how they can be helped, and the veterans think they don’t have anything to gain and that there’s nothing to offer, but I challenge everyone to make at least one T1D Connection in 2014, I promise it will be rewarding.