I remember every moment of my first ski day with my daughter following her type 1 diabetes diagnosis. I was petrified. We were always a big ski family. That included the kids going to ski school all day and then joining us for last-hour runs, followed by post-ski swimming and sledding (and dining out!). With T1D on board, I could not imagine it. But our endocrinologist told me flat-out on day one: I had to find a way to make those things happen. So I sucked it up, worked with him on a plan, and headed out.
Was I nervous, dropping off my 6-year-old with a chronic disease that required lots of attention at a ski school? Yes. But I kept hearing that great endocrinologist’s words in my head: “Show her she can. Set the tone.” So I did it.
At day’s end, both of us alive and smiling, I reflected on what we’d managed to make happen. Then, out of nowhere, my little girl sent me — and the universe — a message. Giant flakes of new snow falling around her in the early-winter dark, she thrust both hands in the air and shouted with a glee that still makes me tingle: “Kids with diabetes DO have fun!”
At that moment, my entire philosophy of how I was going to raise my daughter with T1D came to me: I was going to live in a “culture of yes.” Rather than think of what T1D might take away from her, I was going to work hard to show her that almost anything in life was well within her grasp. It might take planning and some leaps of faith, but I vowed that she — and I — would live doing the things we love and going to the places we dream of going, despite diabetes.
And she (we) have. In her 16 years with T1D, my daughter has, in no particular order: gone to sleepovers; eaten cake at parties without me there; won swim team championships; been a state tennis champ; played field hockey (poorly, but she looked cute in the outfit); served as student body president; been on her homecoming court; travelled for two weeks without me or a nurse; gone to college 500 miles away; driven a car; fallen in love; had her heart broken; spoken before Congress; and more. How have we done it? It’s taken a combination of hard work, trust, faith, planning and embracing life for what it is: something to be lived, not avoided.
Easier said than done? Perhaps. But with some forward thinking, planning and strategy, I believe every family living with T1D can embrace the culture of yes. Here are some basic steps toward getting there:
*Always ask yourself “the question.” And the question is this: If I removed diabetes from the equation, what would my decision be? Sometimes it might be no — for instance, there was no way on this earth my kids were going to co-ed slumber parties in high school (and that’s a story for another Spoonful section!). So diabetes or not, that’s a no. But if my child was asking to do something I’d say yes to without diabetes on board, then my answer, every time, had to be yes. Field trips? Sleepovers? Special events? If it’s yes without diabetes, it can be yes with. My job then was to figure out how and to make it happen.
*Don’t expect perfection. Sometimes, the best thing you can do is remember you are raising a whole human being, not just a human being with diabetes. If doing a certain activity means easing off on the typical amount of blood sugar checking that day or allowing higher blood sugar for a period of time (with your medical team in on the planning), just do it. A happy child is a healthy child. If your doctors are okay with it, be okay with it as a parent too. You’ll show your child that with diabetes, sometimes it’s okay to just be okay rather than perfect.
*Practice what you preach. It’s easy for a D-parent to assume their dreams and goals (and even some basic needs) must be put on hold for the good of their child. And while it is true that this life demands more of a parent, you not only can but must not let it rob you of what makes you happy too. When my daughter was diagnosed, I’d just started my dream job — the one that took a lifetime of hard work and focus to get. It involved lots of travel (and cell phones were not the norm back then). That same endo, when I told him I’d have to quit, stopped me in my tracks. “All that will do is send a message to your child that diabetes robs people of their dreams. You have to keep it — for her!” So I did. Parents need to find a way to still do what they want and need to do. Need a full-time job to pay your bills? You can make it work (so many do!). Are you a marathon runner who needs lots of training time? Don’t give it up. Embrace your own culture of yes to show your child just how it’s done.
*Let your child’s excitement override your fears. Of course we are afraid. We are parents, and we face a lot more land mines than the average parent. But our kids want — and need — to feel excitement, happiness, joy and, yes, freedom from it all. Try to put your own fear aside and let your children’s joy drive when it comes to letting them do the things they want. It’s hard, but it gets easier each time. And just like I felt when my daughter screamed her joy into the snow, you’ll feel a surge of pride when it all works out.
Today that little girl of mine is a senior in college. She’s interning in Congress, something she loves. It means long days of constant running around and lots of drama and stress. It means sometimes she does not hear her continuous glucose monitor alarm and other times she does. Sometimes it means dragging herself to the train to get to Capitol Hill on time after a night of highs or lows. But she does it, and she does it marinating in joy.
Because my girl has grown up in a culture of yes. And every time I was worried or afraid or stressed as I let her go, it was so completely worth it. “Yes” rocks.
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.