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Type 1 diabetes shock to parents’ system

Finn and type 1 diabetes
Rebecca Spehar writes about her and husband Dave’s experience after their son, Finn (left), 6, was diagnosed with type 1 diabetes as a 4-year-old. Finn’s brother, Sam, 8, is at right. (Photos courtesy of the Spehar family)

Rebecca Spehar

It was just another Monday morning. I got my 6-year-old son, Sam, on the bus, dropped off Finn, my 4-year-old, at preschool and tried to cram in trips to the gym, Target and a dozen other errands into a two-hour window.

Busy, busy mom, so I thought.

Looking back, I should have done something brilliant in those two hours, for those were my last two hours of “free time.” No worries, no calls, no heartaches; just mom time.

Later that afternoon, I had to bring Finn to the doctor for what I thought would be a quick visit. He had been urinating frequently, and, naturally, I thought he had a bladder infection. I even had our dog in the car, thinking this was going to be a quick trip. He’ll urinate in the cup, and, if he had a bladder infection, I’d go back to my beloved Target, get the medicine and be home to greet Sam as he comes off the bus. It turned out to be not quite the visit I had expected.

After a series of tests, our pediatrician asked me to call my husband, Dave. The news he had to deliver needed us both present. I laughed as I thought he was joking. We always joked around with Doc, but as I saw the look in his eye, I knew this was serious. Fingers trembling, I called Dave, and he flew out of work to join us.

Meanwhile, Finn was given a blood test. His blood sugar was 680, and we learned that he had type 1 diabetes.

What?

Our doctor sent us to a different hospital’s endocrinology department. The fact that we weren’t sent directly to Children’s Minnesota still haunts me. But what did we know? We were two lost sheep going through the motions. They gave us a two-hour tutorial on how to give Finn insulin injections, using an orange to practice on, and sent us on our merry way. Just like that, we were sent home to care for our son, our diabetic son. How do you think these lost sheep were doing now? No training, no hospital assistance; just an orange. Piece of cake — it’s just type 1 diabetes, right?

As rattled as Dave and I were, in his true nature, Finn was a rock star. Sure, we had a rough start; we’re only human. I think that it was better we were so naive when introduced to this disease. Otherwise, I would have lost my marbles. T1D is complicated, and overnight you’re expected to be an endocrinologist, physiologist, nutritionist, mathematician, etc. There’s no black and white to this disease’ it’s so gray. What’s right for one is different for the other. I always compare it to shooting at a moving target. You may get it right one day, and then the next day you’ve missed by a mile. After a couple of weeks at the other hospital, we changed our care to Children’s. The team there has been amazing. I will forever be grateful to them for all of the help and tools they have given us to manage T1D.

Finn and type 1 diabetes
Brothers Finn (left) and Sam Spehar love to play hockey.

However, from day one we have been self-taught. I remember giving our first injection to Finn at the Holiday gas station after we left the clinic. I was shaking like a leaf, hoping and praying we were doing it correctly. From that point on, it has been nonstop. And when I say nonstop, I mean NONSTOP.

Today, Finn is an incredibly active 6-year-old who doesn’t stop from sunrise to sunset. We test his blood hourly and every 20 minutes during his sporting activities. He gets up to seven injections a day, not including any correction injections he may need. An uninterrupted night sleep no longer exists in our house. Because of his activity, Finn has residual burn like crazy — up to six hours, post-activity. What does that mean? Many sleepless nights, making sure his blood sugar doesn’t get too low. And when it does, we’re trying to find the perfect combination of grams to get him to a safe number to sleep. More often than not, we miscalculate and he spikes too high and needs a correction.

This “new normal” has been an adjustment. I’m not going to sugarcoat it — it has been rough, but we have learned to assimilate: from sleepless nights to hours of phone calls with the insurance company, to calculating every morsel that goes into his mouth, to being that “helicopter mom” at school.

I am no longer just Mom. I’m a walking convenience store with every type of snack you could possibly think of in my bag. Dave and I are Finn’s life line, but at the same time his worst nightmare. Birthday parties, holidays and sleepovers put my stomach into knots. Finn just wants to do what every other 6-year-old does. We’ve learned what we can and cannot do. We work together as a family to do what is best for us. This “new normal” has made us a closely knit team. It has been more than two years since Finn was diagnosed, and we are just now coming out of the tunnel. Each day we work as hard as we do so Finn can live a healthy and happy life.

The most frustrating part of this disease has been other people’s lack of knowledge about T1D. Day after day I have to justify and explain the differences between types 1 and 2. No, Finn doesn’t have a weight issue. His pancreas no longer functions, period.

Roughly 19,000 finger pokes and 6,000 injections later, I can say we’re blessed. I am so proud of how far we and, most importantly, Finn have come. He amazes and inspires me every day. Finn is my hero, my blessing, and I am forever grateful for the mom and person he has pushed me to be. This busy, busy mom has a new role, a new meaning for life and one that I wouldn’t trade for the world.

Rebecca Spehar is the mother of Children’s Minnesota patient Finn Spehar.

Jimmy Bellamy