When my 8-year old son hops on his bike to visit a friend, I don’t focus on his helmet, or the side reflectors. I’m not looking at how fast he pedals. My eyes are on the little black bag fastened to the handlebars. That bag helps me let go.
Benny was diagnosed with type 1 diabetes just before he turned two. Type 1 means your body produces no insulin, the hormone that turns sugar in food into energy. People with type 1 can’t exercise or diet away their diabetes and there is no cure. Without careful monitoring, they can get very sick; without insulin, they will die.
As you can imagine, our lives turned upside down. Finger sticks to check blood sugar at least 8 times a day. Insulin shots 4-6 times a day. I remember a lot of sweating and sticking and crying.
(I also remember Benny thinking how fun it was to squeeze a little bit more blood from his finger to wipe across the floor, or on the wall, or in his big sister’s face. Good times.)
We gradually got used to our new routine. But diabetes, especially in a young child, takes vigilance. Was Benny sleepy and about to nap or was his blood sugar so low he was about to pass out? Since his insulin dose is based on how many carbohydrates he eats, every meal became a math lesson.
An insulin pump meant no more shots but just as much care. While it does give him insulin all day long, a pump is far from automatic. We still have to manually give insulin for food and for high blood sugar.
As Benny got older we encouraged him to be a “big kid” and check his own blood sugar and use his pump at preschool, with supervision. At home, I let him slide. Four years old is too young to be that responsible all day. I was still tying his shoes half the time!
Kindergarten took a lot of work but our school was very supportive. At the time, Benny was the only child with type 1. I still went on every playdate, stayed at every birthday party and felt a bit like a diabetes shadow.
Then we had the snow day.
We live in North Carolina, where any snow cancels school and empties grocery store shelves. When Benny was six we had a beautiful snowfall, a couple of inches of kid heaven. He and Lea begged me to let them go sledding down our street with friends. By themselves.
I loaded both kids up with juices boxes and granola bars. I talked to them about what would happen if Benny didn’t feel well or thought he was going low. They promised me they’d stay on our block. They’d knock on the nearest door if they needed help. I gave them one hour and sent them out into the snow.
I lit a fire and tried to enjoy my quiet house. But after 30 minutes, I started to worry. After 40 minutes I was sure my child was face down in the snow. I considered pulling on my boots when the phone rang. It was Benny, just few houses away. I picked him up; his blood sugar was normal, he was just worn out. The kids had a great time, they were proud of themselves and, most importantly, Benny was fine. Eventually, my heart stopped pounding.
After that, we started letting Benny play by himself at friends’ homes. He would call me with blood sugar numbers and let me know what he was eating. We made a rule: you can’t get “in trouble” for diabetes stuff. Forget to check? Leave your meter somewhere (at school on a Friday afternoon)? Dealing with diabetes is tough enough; we need Benny to know he can come to us with any issue. We’ll deal with it and move on – even if inside I’m freaking out.
Take your meter; take a juice box and a snack. We tried a few different bags, even clipping the meter to his belt. But his bike was the solution. Not only could he visit friends blocks away, he could carry anything he needed. A little black bike bag that doesn’t look special or different, but means independence, freedom, and a not-so-worried mom.
I’m making progress. Just before second grade Benny went to a week-long sleep-away diabetes camp. He went back this past summer and added on two weeks at the regular sleep-away camp his sister attends. He did great, the staff was wonderful and I was fine. Ok, I was terrified. I lost sleep. But I let him go because he was ready and I knew he’d be safe.
Diabetes technology is getting better and better. Someday soon, Benny’s blood sugar checks and insulin dosing may be automatic, I hope and pray that one day there may even be a cure. But I can only plan for what I know for sure.
I want Benny to leave my house a happy, confident, independent young adult. I don’t want him to focus on bad blood sugars or the heavy burden diabetes will put on his life. I want it to be part of his daily routine, with the good days and bad days we all have. Something to laugh at and cry about. Something he can manage on his own.
But maybe once in a while, when he comes home from college or that first job, he’ll let me baby him. Just one more time.
I think I’ll hang onto that bike bag.
Stacey Simms is an award-winning radio & TV broadcaster currently based in Charlotte, NC. She is the president of Stacey Simms Media, which provides broadcast and social media talent.
For more than a decade, Stacey hosted Charlotte’s Morning News, waking up at 3am to give her radio listeners an upbeat and informed start on the day. Stacey’s also been a TV anchor and has won several Associated Press awards in her time as a medical reporter.
Stacey’s son, Benny, was diagnosed with type 1 diabetes in 2006, one month before he turned two. He started using his Animas insulin pump six months later. Stacey started blogging at www.staceysimms.com to keep her radio listeners up to date on her family’s new challenge of diabetes. In the six years since, she’s written about everything from potty-training with an inset on your 2-year-old’s tush, to figuring out school lunches, to whether to send a child with diabetes off to “regular” camp.
Stacey now sits on the Board of Directors of the Charlotte Chapter of JDRF and donates all profits from her award-winning cookbook, I Can’t Cook, But I Know Someone Who Can, to JDRF. Stacey tries to find the humor in dealing with diabetes, even if sometimes, she admits, it’s laughter through tears.
Life is more than diabetes, of course. Stacey loves to play golf with her husband, Slade, and the kids, although Benny and his older sister, Lea, prefer to drive the cart. They’ve recently decided to travel to all 50 states by the time Benny graduates from high school. She’ll keep you posted!