I’ll always wonder if we set some kind of record for largest overnight party in the emergency room the first night of James’ diagnosis. It wasn’t just the three of us—James, my husband Craig and myself—but my parents insisted on staying too. If you can picture in your mind the size of the “rooms” that they issued to us and the relative lack of comfort in an ER, you get an understanding of how cozy we were!
Our first conversations with family members were held that very night as we all learned bits and pieces of information about diabetes from the very busy ER doctors. We learned, for example, that we didn’t cause his diabetes and that it was more about carbs that were difficult to process than “sugars” per se. Remembering that night of ignorance has proved helpful for me in talking to my friends and family about the disease. It has given me understanding and compassion when they don’t know facts that seem so natural to me now but were a mystery before they became such a big part of my life!
Our stay in the hospital was part rehabilitation for James and part education for us. Sunday afternoon the certified diabetes educator (CDE) on staff at the hospital convened a family council of sorts. We invited any relatives that would ever want to care for James to attend. The CDE gave a wonderful presentation about what type 1 diabetes really means and the basics in caring for a child who needs insulin. To their great credit, so many family members attended, including my brother-in-law, Kim’s husband, who had to leave the bedside of his wife who had just given birth!
Of course, I don’t have the luxury of having every family member educated by a professional! If only! Instead, part of my process of adjusting to life with a child with type 1 diabetes has been learning how to talk to my family and my good friends about James and how to care for him. I haven’t always been good about presenting information in a logical, easy-to-understand fashion. Fortunately, I have picked up a few tricks.
With practice, I’ve learned better ways of broaching the subject of diabetes care. I find it necessary to be positive, both for my own sake, for James’, and for the person who is embarking on the role of caretaker for my son. I’ve been able to bring genuine enthusiasm to discussions about diabetes technology and scientific advancement, and that’s generally met with shared excitement. I try to talk about diabetes like I live it. My knowledge is constantly evolving, and my experience has shown that I am not perfect, but my understanding is growing and improving. Again, understanding that diabetes myths are so common that I myself believed many of them prior to personal experience has helped me to be more compassionate when dealing with people who are new to this illness.
Not everyone will “get it.” Some people simply aren’t willing or comfortable. I always feel that, since that means that their contact with James will be limited, they are the ones who are missing out, and it makes me a little sad for them! Some people have real difficulties in understanding the mathematical calculations or dealing with the instrumentation that requires some fairly good fine-motor skills. I’ve found it never pays to give up on people who are willing to learn, though. Remember, diabetes didn’t interview you and find you qualified to care for your child. You BECAME qualified because you had to be! Others CAN do the same!
In my experience, while talking to others can sometimes be frustrating, it’s also a way to bring awareness about diabetes to the public at large, a little bit at a time. It certainly sweetens the experience to be surrounded by family and close friends who now “get it” and who care enough to learn the caretaking process and act as advocates at my side.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.