Our New Normal

Solving her son's medical mystery was just the first step. Coming to terms with the emotional fallout made up the rest of this mom's arduous journey.
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Rebecca Greenfield

"You're shooting up before my eyes," I told my 14-year-old son, Brian, last summer as he sat on the couch petting our cat. His face had thinned out practically overnight, but for weeks he'd been devouring his dinner — and then topping it off with a bowl of cereal or a bagel. That's a growth spurt for you, I thought.

Before heading to bed, he'd gulp down two or three glasses of water. In the morning, he'd be impossible to drag out of bed for weight training with his football team. On car rides Brian seemed half-asleep. Instead of enlightening me with something he'd read about black holes or singing quirky Jonathan Coulton songs, he rarely spoke on the way to practice. Knowing our teen was also building sets eight hours a day for a summer musical, my husband, Glenn, and I chalked up his exhaustion to the July heat wave and too much time with a dumbbell in one hand and a hammer in the other.

Then, toward the end of July, things stopped adding up. We spent a Sunday at the beach with family and I reproached Brian for sitting back and reading instead of tossing a Frisbee with his cousins. "How can you possibly be tired?" I hissed, handing him the sunscreen. "You went to bed early." My sister had another reaction: "Brian's looking awfully thin," she pointed out to me. "Even for a skinny kid." I took her words to heart, yet found another excuse. Brian had seemed sick (perhaps he had a virus, I thought) when we returned from the beach. I meant to call the doctor. But I was busy working and helping our daughter Emily shop for her freshman year of college and never got around to it. However, at the end of that week, Brian told me he had been up all night going to the bathroom. We immediately headed to the pediatrician. Maybe it's just a urinary tract infection, I told myself.

After an assistant checked his height and weight, she said he had lost 11 pounds. "His urine test shows high sugar levels," the nurse explained. "With the weight loss and his other symptoms, I think it's diabetes." She instructed us to go directly to the children's hospital. "Why don't you call your husband and have him meet you there," she suggested.

"We haven't had lunch, and my phone battery is on fumes," I said. "Is it okay if I run home first?"

"Better pick up something to eat on the way and go straight to the hospital," she replied. I could tell by her tone this was serious.

What I didn't know at the time was that Brian's blood sugar was off the charts. Here's why: Your pancreas makes a hormone called insulin to help your body turn food into energy. Except Brian's pancreas wasn't making enough insulin, so the energy from food (also known as glucose or sugar) wasn't being used by his body. Brian wasn't going to the bathroom
a lot because he was drinking so much water. He went because his body was trying to expel excess sugar. Then he'd get dehydrated and thirsty.

Taking so long to get a diagnosis made matters worse. His body thought it was being starved, so it started sucking energy from his fat and in the process produced acids. His urine contained large quantities of acids called ketones, which were building up in his body and poisoning him.

"I kept thinking it seemed like diabetes," I told the certified diabetes educator at the hospital. "But we have no family history, so I didn't pursue it." Turns out I wasn't the first mom — and likely wouldn't be the last — to assume that connection was critical.

"Practically everyone who comes in here says the same thing," she responded. "A lot of kids' diabetes goes undetected to the point that they end up in the ER, so don't beat yourself up."

Of the 80 people in the U.S. who are diagnosed with type 1 diabetes every day, only 15% have a family history. On the flip side, about 40% of the population carry the genes that predispose them to type 1 diabetes. But those genes need a little push to activate the disease. Environmental factors, such as viruses, can combine with the risk genes to create the push that causes the body's own immune system to attack and destroy insulin-producing beta cells in the pancreas, explains George King, MD, research director at the Joslin Diabetes Center in Boston.

Type 1 diabetes comes on quickly — Brian had been perfectly healthy at his annual checkup three months earlier. And the disease is on the rise: The prevalence of type 1 diabetes in U.S. children has increased 21% over the past eight years, and scientists aren't sure why. While it traditionally affects mostly Caucasian, non-Hispanic kids, the rate of children of color being diagnosed with type 1 is growing.

At the hospital, Julie, the diabetes educator, explained that for the rest of his life, Brian would need a shot of fast-acting insulin with every meal and another shot of long-acting insulin every night (although these days he uses a pump instead to get a slow, steady infusion of insulin). She taught Brian to check his blood sugar by pricking his finger with a lancet, read nutrition labels in order to count carbohydrates, calculate how much insulin he'd need and handle an insulin pen. As Glenn gave our son his first shot in the hospital, I counted my blessings that Brian wasn't afraid of needles.

When we left about three hours later, the staff sent us home with books, instructions, prescriptions and a diabetes kit with insulin pens, a blood-glucose meter, a log journal and more. I was convinced that if we adhered to the instructions, Brian's diabetes would be no more than an inconvenience.

However, driving home, I wanted to cry for my sweet Brian, the boy who rescued crickets trapped inside the house. Brian, who always ended a phone call with "I love you." He'd have to deal with this disease for the rest of his life. His carefree existence was over. The work of coping with a chronic health issue wasn't starting at 50 with a bad back or 40 with high blood pressure, but at 14.

The months following Brian's diagnosis were the hardest of my life. I threw myself into reading about diabetes and monitoring my son's blood sugar levels. Although Brian had a great attitude and tried to follow instructions, he struggled with an added challenge: absentmindedness. His forgetfulness led the hospital's social worker to recommend that he be evaluated, which resulted in an ADHD diagnosis. The double whammy of dealing with both challenges made it hard for us all.

Even with the most compliant patients, it's nearly impossible to keep blood sugar within the ideal range every day, all day. Exercise, stress, hormones, illness, growth, food and other factors influence blood sugar levels, so daily shots can only do so much. That's why I was vigilant, spending at least an hour a day communicating with teachers who noticed when he was dazed due to low blood sugar, coaches who needed to know he'd be late for practice, the school nurse, the school psychologist, his pediatrician and more. With tuition bills for two kids in college and a chronically ill child at home, the stress was mounting. At one point, my oldest son asked Brian how he was doing. "The worst thing about diabetes is Mom," he quipped.

Not only was I nagging my son, I was wearing my own nerves as well. After my second illness in two months, my nurse practitioner suggested talking to a therapist about the guilt, sadness and tension I felt regarding Brian's diabetes. "When?" I asked. I hadn't had time for a haircut in months. How was I going to find time to talk to someone about how I was feeling? By November, in desperation, I called the number for JDRF (a global organization for funding type 1 diabetes research) that I had found in a packet from our first hospital visit. I learned about a local support group for parents of kids with type 1 and immediately began attending monthly meetings. They saved me.

Yes, the other parents confirmed: Being a type A personality mom with a forgetful, disorganized diabetic teen makes for difficult family dynamics. Yes, the daily struggles of diabetes and ADHD would be our new normal — and having one kid with both illnesses was no picnic, they agreed. Just hearing someone else acknowledge that this was really hard reassured me. I wasn't being a drama queen because I was feeling overwhelmed. What we were going through was truly challenging.

After getting sick a third time, I started experimenting with delegating more to Glenn, like leaving it to my husband to make sure Brian checked his blood sugar prior to lights-out. In the spring Brian asked if he could join the 30-Hour Famine, a hunger-awareness movement in which kids fast for 30 hours. During the fast, they'd devote a day to community service and sleep on cardboard on our church lawn under tarps. Did I mention I'd also be out of state at a conference that weekend? You can imagine my reaction. But I was working on trusting more. So I did.

Since Brian needed to eat, he wasn't required to fast. Still, I ran it by the school nurse and his medical team. I instructed the event's organizer on signs of trouble and asked his best friend to set an alarm on his phone to remind Brian to take his shot. And I had faith my husband could handle anything that might come up.

When I returned from my conference, I learned that everything had ... gone fine. That weekend taught me to let others look out for Brian. I recognized I had to model for my kids how to take time for yourself and lean on people for help. By the time the one-year anniversary of Brian's diagnosis rolled around, he had switched to an insulin pump, a small, computerized device that delivers the hormone continuously through a small tube into his system. His blood sugar lows and highs were not as drastic. I eventually realized that (without nagging) Brian knew what to do before bed so he wouldn't experience symptoms while asleep. Finally, I stopped holding my breath. But in doing so, I wasn't neglecting Brian. I was allowing him the independence he had absolutely earned.

Originally published in the November 2014 issue of Family Circle magazine.