Things I Want You to Know About Living with Type 1 Diabetes, by Amy Ohmer
Insight Note: I asked Amy Ohmer, a partner, colleague and friend to reflect on an article written by Angela Carosella and colleagues entitled, “What Parents of Children With Complex Medical Conditions Want Their Child’s Physicians to Understand.” https://jamanetwork.com/journals/jamapediatrics/article-abstract/2672043. In this 2018 article, the authors outlined 10 ways to help parents of children with complex medical conditions. Her insights are reflected here. Follow Amy at naturallysweetsisters.com
Things I want you to know about living with Type 1 Diabetes, by Amy Ohmer
My best ideas often come from places where I am completely shrouded in silence... like that alone time in the car or during my morning shower. As I zone out the rest of the world (not entirely while driving - don't worry, you are safe with me on the road), I contemplate how darn lucky we have been, as a family, within our support of T1D. After all, it does take a village to raise children, and even more so, children living with T1D.
This acknowledgement led to thinking about what I wish I had known to tell everyone all of those years ago during our initial diagnosis. So from my silence-induced mental ramblings, here is one of my favorite top 5 lists of all-time.
1.) See my children. After diagnosis shock has worn off, I hope that you understand that my children are still the same curious, bright, happy and engaged kids that they were a week ago. Type 1 Diabetes does not diminish their spirits, hopes or dreams. It only requires a bit of daily insulin therapy.
2.) Recognize that they are rapidly becoming experts in their own care. As adults we often think that only we know best. The truth of the matter is that children living with chronic care needs are more well-versed within their T1D care than most providers, teachers, coaches, friends and loved-ones. As a community support, we should be respectful of their needs and not question whether 'they can eat that' or 'do this' or 'be that'. Support means listening, encouraging and celebrating their T1D journey.
3.) Let go of your personal bias. This is hard for most everyone, me included. However after our 12 years of post diagnosis, I have learned that it is possible. People that once said they were afraid of blood/needles, or repeated sad stories of long lost relatives, or were concerned of contagiousness, now understand that T1D management is less about the horrors of medical care but more about the necessity of good health. We can shift paradigms but only if we agree to let go of what we think we know.
4.) Cheer for the kids. Cheer for all of them and often. Young people are living with many invisible layers of complexity from food scarcity, to insecure homes, to medical concerns like Type 1 Diabetes, and this is just to name a few of the very 'adult' issues that are happening. I love cheering for the quarterback just as much as I do for the child that quietly draws. When my girls were little, we made it a point to celebrate their success but to also point out peers that were accomplishing their own goals. To this day, I firmly believe that this generation will be changing the course of our world by simple improvements. All kids deserve our encouragement because everyone has something.
5.) Childhood is short. With so many necessary T1D tasks, I never wanted to lose sight of the magic of being a kid. Encourage your loved ones living with T1D to try out for the sports team, sing loudly, be silly and stay up too late. Eat the chocolate. Be a little naughty. Go to overnight camp and have FUN! Until there is a cure, there is a life waiting to be lived and no one should waste a second of it. When you interact with my girls, remember that they may sound like well-versed adults, they are still kids. Enjoy them. Have fun with them and be amazed by all that they do. However, most of all, recognize that they are light-hearted goofballs that just happen to wear an insulin pump and still believe that life IS good.