The school was there to figure out a way to help my daughter embrace pumping without having to leave the classroom to go to the nurse a bunch of times a day. Together we eventually came up with a plan that worked, but it didn’t happen overnight. It took time, and it also required me to understand the school’s needs, point of view and accept how they might need to come up short of what my expectations at home would be.
With the Dexcom Share usage sweeping the diabetes community, my adult daughter with diabetes and I decided to experiment. She – the person with diabetes- would get one and let me look in on her life with diabetes for a while. She’d see what it was like – after all these years of independence – to have someone oversee her diabetes life. I – the parent of someone with diabetes—would see – after years of trusting her and supporting her from afar – if I could handle seeing how life goes for her minute by minute.
As Emily’s parents told me she had been bullied for her diabetes, especially the fact that she wore a CGM, I glanced over and saw the sad look in her eyes. I knew that even though I didn’t think my talking to her would do much, I had to try. Every time I had an opportunity to talk to Emily one-on-one, she asked sincere questions, and truly wanted to know my answers. Had I ever been made fun of for having diabetes? Had I ever felt self conscious about it? How did I come to love myself in spite of living with the disease?
D-Mom Kim Savage embraced raising her young son with Type 1 diabetes while going full on chasing her dream, too. Now, her son with diabetes is a teenager and her career is on the brink of superstardom thanks to a three book deal with the prestigious publishing group of Farrar, Straus & Giroux/Macmillan.
What I thought: Because I just don’t love her enough. If I loved her more, her numbers would totally stabilize.
What I said: Type 1 diabetes means that the body does not produce insulin. And since the synthetic insulin and tools to track what it is doing in the body is still pretty crude compared to the workings of a real pancreas, there is nothing I can do to 100% “regulate” my child’s blood sugar.
Fear may very well be the number one complication impacting families of children with diabetes today (and many adults, as well). As we glimpse more into life with diabetes, seeing more glucose trends thanks to tools, hearing more stories thanks to social media, being told more and more to fear… it might be crippling many of us. So how does one vanquish fear?
This one is for the outside world, the people watching us try to master this parenting a child with diabetes life, because I’ve noticed that you’re avoiding me sometimes. And other times you say things with the best of intentions that just… set me off.
So here it is, my guide to help you. Instead of saying what not to say to the parent of a child with diabetes, I offer you what yes to say. I hope it helps you. I know it will help me.
I’m sharing five books that changed me for the better, and helped me see things I’d never considered before. Here is my list of five nonfiction books that have absolutely nothing to do with diabetes, but that everyone with diabetes in their lives in some way absolutely needs to read.
I am a lucky JDRF volunteer. I get to learn all about Type 1 diabetes research, have it translated for me into my own language (which is “regular person who does not know big words”), and then I get to go all over the country sharing news about Type 1 diabetes research with others who speak my language.
Sierra Sandison became a role model, symbol, and icon to the millions of people with Type 1 diabetes all by deciding (in an admittedly somewhat hesitant way at first), to do something so simple and yet so complicated it’s hard to fathom: wear her insulin pump in clear sight while competing.