Christmas List

Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.

As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.

Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.

For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.

A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.

Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?

Me: Yeah, I guess so. Is that something you really want?

Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?

Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.

(long silence, Henry regards the back of the book)

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Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?

Me: Well, some people say yes, and some people say no.

Henry: So, is diabetes a disease?

Me: I think you’re the person who gets to decide that. So, what do you think?

Henry: I think diabetes is just diabetes.

 

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Half His Life

Mr. Neideffer, my Algebra II teacher, tapped his knuckles loudly on the board. He looked at me expectantly, prompting me with more loud taps against the blackboard, “Well, Rhonda, what’s the answer?”

Rhonda is my mom’s name, and some 25 years ago, Mr. Neideffer had my mother as a student in Algebra II. He called me Rhonda so often that I eventually stopped correcting him and just answered to my mother’s name.

On this day, we were studying direct and inverse proportions, and while I didn’t know the answer to his question, the irony of the lesson was not lost on me. Instead of focusing on Mr. Neideffer’s question, I thought about the age difference between my mother and me. When I turned 25, my mom would be 50, and I would have been alive half as long as she had been. When I turned 50, my mom would be 75, and I would have been alive three-fourths of the time as she had been. We would always be 25 years apart, but as we got older (an increase) the difference between how long we’d lived on the earth would decrease.

In the diabetes community, people often celebrate their diaversary (diagnosis + anniversary). While we talk about it, we don’t celebrate it yet, as we’re waiting to see how Henry wants to mark this day.

Since the invention of insulin, every diaversay is no doubt a marvel; however, I can’t help but feel somewhat sad because it marks another year of living with a chronic disease, which is hard work that we do everyday. Yet, another date makes me sadder: December 15, 2016.

This day marks the midpoint, where Henry’s lived as many days with diabetes as without. Everyday after December 15th is an inverse proportion: the amount of time he didn’t have diabetes decreases compared to the time he will have it.

Not uncommonly, someone will tell me that we’re lucky Henry got type 1 diabetes so young because he won’t know a different life. While I want to believe this, I can’t. I think of the greater proportion of time his blood vessels will be exposed to high blood sugars, the greater likelihood of complications. If I got diabetes right now, I’d be in my 70s before I’d have lived half my life with T1D. Henry turned 6 this year.

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When I become too forlorn about the burden of type 1, and what that means for my son, I remind myself that the miracle is he turned 6—that 96 years ago, before insulin, people with type 1 could expect to live 2-3 years after diagnosis. The miracle is everyday after January 11, 1922 when insulin was first delivered to a person with T1D, and that miracle includes today and the one after.

I Can’t Count All the Snows

“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.


But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.


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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.