People Who “Get” Diabetes

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People Who "Get" Diabetes

As a parent of a child with Type 1 diabetes since December 2010, I know the frustration of dealing with people who just don’t “get” it. And then I think back to February 2007, when the little boy across the street was diagnosed with Type 1. Did I get it? I cringe as I try to remember. I knew about insulin pumps and that there were two types of diabetes but that was about it. I also knew that this little boy, Weston, was my son’s best buddy. I treated him exactly like I always had. I made him call his mother when he got to my house. I watched him cross the street each time he left my house. I do not remember getting instructions for what to do in case he went low. I do remember him saying, “Miss Robin, do you have any graham crackers? I need to eat something right now.”

Fast forward almost four years. Weston’s mom was the first person I called after Kate’s diagnosis. She brought Kate a gift basket of juice boxes and other low treats. She got it. I didn’t need to explain a thing. Reflecting on our journey, I realize that while there have been times when it seemed like no one got it, there were so many more times when people tried to show they did.

For example, the school principal called immediately and said, “Tell us what you need us to do for Kate and your family.”

And the school secretary called the next day to tell me she has Type 1 and wears an insulin pump.

The school librarian, who had been an RN, took complete care of Kate’s needs during those first few months of adjusting. She even asked to come to pump training.

Other teachers asked to be educated, and asked to practice giving injections and doing site changes. Some made room in their classrooms for Kate’s supplies and bought her Diet Cokes when her blood sugar was high.

Kate’s former teachers greeted me with tears in their eyes when they learned of Kate’s diagnosis, their hearts aching for this child that they loved.

Kate is now in high school. Some things have changed– many new friends (and a lot of new parents for me to meet). Some things are the same, like the friends who are willing to learn about diabetes, and who understand that diabetes is only one part of who Kate is as a person.

So we are grateful for the high school teacher who reached out before freshman year to ask Kate’s opinion on how to address the “no food in class” rule, which of course, did not apply to Kate. Would Kate know that the rule didn’t apply? Would she feel uncomfortable eating in class if she needed to? Did the rest of the class need to know why Kate was exempt?  Thoughtful, kind questions.

And the teacher who asked in advance if Kate had a preference for where to sit in case she needed to leave the classroom.

The teacher who shared that he has a cousin with Type 1.

And then there are the parents and friends… those who thanked me for letting them know about the diagnosis before their kids came home from school, so they could answer questions and provide comfort.

And the parents who never stopped inviting Kate to birthday parties, pool parties, and sleepovers.

The parents who chaperoned my daughter on field trips when I couldn’t be there.

The parents who called and asked if Kate needed anything special.

The parents who’ve invited Kate knowing she has Type 1, and those who’ve invited her and don’t know until she gets there because it is just such a part of her that their children don’t think of it right away.

The friends who watched the Diabetes Education PowerPoint Kate created.

The friends who asked to have their blood sugar checked.

The friends who donated to our fundraising walks and those who joined us on those walks.

The new friends who asked Kate to check her blood sugar again, because they missed seeing her do it the first time. (And she did.)

The coaches and camp directors who haven’t even flinched when they discover Kate has diabetes.

And every person who has “liked” one of our Facebook posts or Instagram pictures about diabetes. That simple act is greater support than you realize.

Sure, we still get “You don’t look like you have diabetes? Did you eat a lot of candy?” and the “Should you be eating that?”, but we view those as teachable moments.

So do all these kind and generous people really get it?   Probably not, because, no one really gets it unless they live it. And I hope they never do. I long for the day that no other family gets it. And in the meantime, I am grateful for all those who do their best to help and support us.

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Comments (9)

  1. Chantell at

    Oh my goodness! Tears are streaming down my face as I read this! So beautifully written. I have a sister and a nephew who have T1. But I hardly knew anything about it until my own son was diagnosed. They each just did their thing and didn’t seem very different and I just never learned much about it. I remind myself of that when people say things to me because they obviously don’t understand just as I didn’t. I’m grateful for the teaching moments! Most of them anyway! 😉

  2. Charlotte at

    After 31 years, diagnosed at age 14, my own parents still don’t get it.

  3. cindy groves at

    After 20+ yrs, my parents didn’t get it either. “Where’s the regular soda, I don’t feel good?”. ” Did you take your insulin?”. I don’t feel good, my sugar’s 400?”. “Want something to eat?”

  4. Pam at

    Lovely. It’s always a relief to connect with someone who gets what my son goes through on a daily basis.

  5. Stephanie at

    Tears here as well. 8 Yrs after our daughters dx aged 12, we are still fighting for people to “get” it. I am not so naive to think that everyone will just magically wake up one day and that’s it they will all just know everything about Type 1 and what it entails to fight through each and every night for 8 yrs straight. But… I am still under the wish,hope, prayer, and continual pain,frustration and sadness that those closest to her and us have not made an effort to understand or care what it’s all about. Yea some have made an effort to find out that there is more than 1 type of diabetes- That’s great but I’m talking about family and friends who STILL think that we overexaggerate the severity of this disease and all the “what if’s” that come with it. What If she gets the flu.. What IF she drops too low in the middle of the night and in the morning she is no more. It is painful in the first place to not have support and for people that you thought were closest to you to belittle and shame and ignore and desert because of ignorance and their misguided understanding of diabetes and the fact that your child has Type 1. To me if people cared they would do everything they could to lift up and learn and support. Longing for people to “get it”.

  6. Michelle at

    I was diagnosed with Type 1 diabetes at thirty-six.
    I missed dealing with diabetes as a child and the difficult teen years. However, I do understand that people do not “get it”. I have so much respect for the children and their families who fight this disease. You are super heroes. I have so much to learn from you.

  7. Helen at

    Goodness you’ve been so lucky with teachers and friends. We’ve had very little of this, and it’s been incredibly hard to let people know how serious it is, without freaking them out or appearing militant. We’ve had necessary care, but very little of the empathy you describe here, especially from school and clubs. This is a lovely post, but it’s made me realise quite how alone we are with this.

  8. Barbara at

    What a different world! When I was a child with diabetes, diagnosed at age 5 in 1950, there were no other children in my school with diabetes and that continued all the way through high school—although there were three of us in college. There really was “no one” who “got it.” There was no “help” – but it makes me very sad that it has become almost commonplace for everyone to know several people with diabetes. Yes, the idea that so many people care is absolutely wonderful but at the same time, what a shame that diabetes has increased over the years to be such a presence everywhere…to say nothing of the horrific number of ads on TV. Fortunately, I had wonderful parents as well as an actual endocrinologist by the time I was 9—-although, even with him, how very little we all knew for so many years until BG meters came along, and then pumps, and on and on.

  9. Sue malone at

    This blog is the best. Thank you for this article. I too have family members that are afraid to be left alone with my 9 year old daughter, and friends that no longer invite her over to play with their children. It makes me angry. But reading this article, reminds me that lots of people do ”get it’, and others have the same frustrations as I do.

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