A Mother, Her Son and Type 1 Diabetes

If she couldn’t manage her own metabolic disease, how could she help her son with his?

Posted in , Sep 19, 2013

Christy Hoss with her son, Andrew

The principal shifted uncomfortably in his chair. “I’m sorry,” he said, “but I’m concerned about Andrew going on the class trip to Yosemite.”

My hands clenched in my lap. This could not be happening. “He’s been looking forward to it for months,” I said. The five nights in the wilderness were both an end-of-school celebration and an outdoor science lab, the highlight of the year for my son’s entire sixth-grade class.

“It’s just too great of a risk,” he said. “We’ve had some bad experiences with diabetic children in the past and I can’t ask the teachers to look out for him. The trails are steep, slippery. If he got light-headed...”

“I’ll do it!” I blurted out. “I’ll volunteer to be a chaperone.” After all, if it weren’t for me, Andrew wouldn’t be in this mess.

I didn’t have diabetes when I was Andrew’s age. No one in my family had ever been diagnosed with it. I wasn’t overweight. I was a lifeguard, an athlete. I was fit, happy, carefree.

But in my sophomore year of college I was constantly thirsty. I couldn’t drink enough. Then in class I couldn’t read the blackboard, even from the front row.

I’d just gotten married. “Something’s wrong,” my husband said. “You need to get this checked out.” By then, I was so weak, I could barely function.

The doctor ran some blood tests. When he returned to the exam room his face was grave. “Your blood-sugar level is off the charts. You’re lucky to be alive.” I stared at him in disbelief. What was he talking about?

“Christy, you have Type 1 diabetes. Your body isn’t producing insulin, which you need to metabolize sugar. Diabetes requires careful, frequent monitoring. It’s not curable, but the good news is it’s manageable.

"It shouldn’t at all limit what you can do provided you make some changes and stick to them.”

I was put on a strict diet plan and shown how to test my blood and give myself insulin shots. After a short hospital stay I felt better. But at home I struggled.

Getting the right balance of insulin and sugar was a constant juggling act. I had to manually calculate the correct dosage of insulin, using a chart. But it wasn’t precise. Any physical activity made the insulin kick in faster.

My first day at home I was vacuuming when I felt like I was about to faint. I slumped onto the couch. This is impossible, I thought. There was so much to think about! I’d forget to test myself, skip a snack or take too much insulin.

Everyone else could eat what they wanted, yet I had to constantly monitor myself.

Somehow I made it through college and got a job. I went camping and hiking with my husband. Eventually I was able to afford an insulin pump, which delivers insulin continuously.

It was great no longer having to give myself shots, but by then I’d come to resent even the smallest demand from my diabetes. Sometimes I cheated with an extra snack, out of spite. All I wanted was to be free of it.

When Andrew was born, a perfect, healthy baby, I couldn’t thank God enough. He grew up tall and strong.

Then that past December I’d noticed Andrew drinking glass after glass of water. He woke up two or three times a night to go to the bathroom. And he was irritable, way more than your typical 11-year-old. Deep down inside I knew I had passed on my Type 1 diabetes to my son.

“Lord, how could you let this happen?” I cried.

The doctor confirmed my fears. “There’s a routine you have to get used to,” he told Andrew. “But you can do it. Just look at your mom.”

I vowed to be the perfect role model, to encourage and support Andrew, to overcome my own resentment at my disease. But instead it became a daily battle, a wedge between us. He resented my frequent reminders to test himself.

Things only got worse when he got his insulin pump. He quickly learned how to cheat the system, helping himself to an extra snack or two and then trying to make up for it with an extra dose of insulin, without bothering to check his blood-sugar levels. Just as I had sometimes done.

I worked at Andrew’s school as a teacher’s aide. Anytime he looked shaky I got a call. He hated me rushing to him in front of the other kids. Of course he did. I hated it too. And now his diabetes might keep him from the class trip.

I had to do something. That’s why I impulsively offered to chaperone. The principal looked skeptical. “I have diabetes too. If something goes wrong I’ll know what to do,” I said.

The principal finally agreed.

By May, Yosemite was all Andrew could talk about. I knew he hadn’t thought once about all the times we’d have to stop to test our blood.

I packed tons of snacks and juice boxes, dozens of testing strips, extra bottles of insulin and syringes in case our pumps failed. I tried not to think about how heavy our backpacks would be.

The second morning we set out on a seven-mile hike up the Mist Trail, 1,900 feet to the top, alongside two roaring waterfalls.

The rest of the group, 26 sixth graders and five adults, began working their way up the trail. “We need to test our blood sugar,” I reminded Andrew. “Now?” he said. “Everyone’s leaving!”

He was practically jumping out of his boots with frustration. Inside I was a bundle of nerves. I tore through my pack for the box of test strips, digging through juice boxes and breakfast bars, insulin bottles and syringes, growing more frantic and discouraged by the second. Lord, I prayed, I can’t do this.

Finally, I pulled out the test strips and handed one to Andrew, then pricked my finger. Instantly a droplet of blood sprang up on the tip, a deep, brilliant red in the mountain sunlight. I looked at my son, a dot of blood on his finger too. Our blood. The wellspring of life. What I’d given to him. What we shared.

I looked up above the towering pines at the crystalline sky. I breathed in the crackling air and felt a divine peace.

My insulin pump revealed the test results. “I think we should eat a granola bar,” I said. Andrew looked at me, his hair tousled, his cheeks already smudged with dirt. He looked handsome, strong, healthy.

“Sounds good,” he said, and we punched the grams of carbohydrates we’d be eating into our pumps. I remembered how when I was pregnant with him I’d been so careful. I’d never taken any shortcuts with my diabetes, never cheated.

I did it so I would have a healthy baby. And I did. One who happened to have the same disorder I did. Not curable, but manageable. I’d managed it. And he would too. Together. And with God.

We finished our snack and I shouldered my pack. It felt light as a feather. I knew I wasn’t lifting it alone.

Too soon, it seemed, we left the peace and tranquillity of the wilderness behind. And back home, Andrew and I struggled anew. Month after month I clung to the memory of that beautiful moment in Yosemite, trusting that God was there, a memory that gave me strength and hope.

The next summer I heard about a 10-day camp for juvenile diabetics, where Andrew would learn more about diabetes and how to care for himself, while hiking, swimming and singing campfire songs with kids just like him.

He met other role models, people who showed him step-by-step how to manage his diabetes. Andrew recently graduated from high school and has spent three summers working as a counselor at diabetes camp. A role model. I couldn’t be prouder of him.

In a strange way, diabetes connects us, a disease that has also brought blessings. Blessings I’m reminded of daily, every time I prick my finger.


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