“Your child has type 1 diabetes.” When a doctor utters these words, it can seem like life will never be the same. People tell you you’ll adjust, you’ll figure it out, and things will eventually start to feel normal again. But how do you get to that place? We spoke with parents of kids with type 1 diabetes to discover what helped them find their “new normal.”
Not Sweating the Small Stuff
“At some point, it finally occurred to me that I could do everything just right and still find that my 11-year-old daughter’s blood sugars were ‘wrong’ — that diabetes management is science, but it’s also art, and art is imprecise and individual. It occurred to me that the thing to do was check Julia’s blood sugar regularly, do what needed doing if an adjustment was needed, and move on without getting upset; that every blood sugar number is a good number because my child is still with me. And that passing this wisdom on to my daughter is one of the best things I can give her. I wish someone had told me all that. It changed everything for me.” –Duana, mom of Julia, Austin, Texas
Dropping the Heavy Baggage
“We left the hospital full. Our hearts were full of worry, our brains were full of knowledge and our hands were full of stuff! New stuff like testing kits and insulin vials and needles and alcohol prep pads, carb-counting books and log books, phone numbers, pamphlets, sharps containers and an important booklet full of phone numbers to call. For weeks, maybe even months, we carried this stuff — ALL of it — with us everywhere we went. We just felt like we needed to be prepared for any possibility. For us, the breakthrough came when we realized that we didn’t need to bring everything in the world with us. If we brought a small testing kit and some supplies for lows, we really would be okay on a quick errand to the store, a trip to the park or even to the movie theatre. It was freeing to think that diabetes meant a small change to our daily routine while most things in life stayed the same — the smaller size of our bags symbolizing the amount that we allowed diabetes to change our lives.” —Jen, mom of James, Southern California
“Our 5-year-old son was diagnosed with type 1 when he was 3½. Educating ourselves as much as possible on how to manage the disease has helped us adjust to life with diabetes. Getting involved in advocacy got us past grieving the past. Raising awareness and working towards a cure has helped us feel like we are doing everything we can for our son.” –Jeff, dad of Matthew, Rolesville, N.C.
Finding Other Families With Type 1
“Type 1 can seem very isolating. The long-standing friends we have were supportive, but they had no way to fully understand just how life-changing this diagnosis is. People who used to include our 12-year-old son Justin in play dates were afraid to have him over without me for fear of him going low or having a diabetes issue they couldn’t handle. I contacted the local JDRF office and asked to be put in touch with another family living with type 1. My preference was a boy Justin’s age so he could have someone to identify with, and I could have someone to talk to who was experienced in caring for a child with type 1. The doctors and diabetic educators are wonderful, but you get such practical tips from other parents. JDRF put me in touch with a mom whose son was diagnosed almost a year before Justin. Developing friends in the same situation offered the support we desperately needed.” –Lori, mom of Justin, Greenville, S.C.
“After my daughter, then 9, was diagnosed with type 1 last year, I definitely grieved for our old life for several months, and there were a lot of tears. I was worried we would never be able to go on family vacations again like we used to, because I was afraid to disrupt Alexandria’s daily routine. But then I decided we couldn’t put our lives on hold for diabetes, so I booked a weekend trip to a nearby resort town. We had the best time! Sure, it required a bit more planning beforehand, but it was a very healing trip for all of us. We realized we could still take trips and go on adventures, we just had to make some adjustments.” –Paulette, mom of Alexandria, Fairlawn, N.J.
Letting Go of What-Ifs
“I still remember Kaitlyn’s first really low number. After that night, I set my alarm for even more frequent checks. I told myself that my daughter’s life depended on my constant diligence. I was wearing myself out and getting really cranky with my family due to my lack of sleep. I was constantly harping on my husband to help me more. I thought that this was the best way — the only way — to feel that she would be able to live a happy, normal life. Looking back, I see that I was creating an atmosphere in our home that was anything but. The turning point for me happened one night when I slept through my alarm and woke up frantic. I ran to Kaitlyn’s room; she was sleeping peacefully. Her number came up slightly high, but that was OK in my book. I realized that I had gotten a full night’s sleep, and everything turned out alright. At first, I thought, ‘Well, we were lucky this time, but what if… ‘ Then, I stopped myself. What if we got in a car accident?? What if an asteroid hit the earth? There are a million ‘what if’ scenarios in life even without diabetes, and we can choose to live in fear or have faith that things will work out for the best. I made a conscious decision that day to not dwell on the what-if scenarios. We do our best, but I don’t go insane thinking about what might happen when we’re not perfect. That decision has helped us find our new normal.” —Kim, mom of Kaitlyn, Southern California
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.