Resisting the Spectacle of Being a T1 Kid

Sometimes, T1 kids don’t want to talk about their condition. Should you encourage them to share or give them space for privacy?



 

Just a Little Sweet

There is something about the rare moments when you can watch your kids quietly from a distance, observing them as they interact with their friends. I’m often surprised by what I learn about their personalities when they realize Mommy is not hovering over them. It’s hard to provide that space, as learning not to interfere means suppressing my natural maternal instincts, especially for my T1 child.

Zayd was diagnosed with Type 1 diabetes a few days after his second birthday. He is my baby, my first born, and his diagnosis brought out the fierce mama bear in me. I wanted to make this go away, to pull him back in my womb where he could once again be safe, but I couldn’t. Instead, our life became consumed by insulin shots, needles, finger pricks, and carb counting. Throw in erratic toddler eating and sleep habits and you can imagine how chaotic it was. I couldn’t let go for a single minute. After all, diabetes doesn’t ever let up.

During one play date when Zayd was younger, I was sitting in a corner reading a book when Zayd came running in, followed closely by his friend, “M.” Zayd’s friends were mostly past the curiosity phase of his diabetes, but M. insisted that Zayd show how he tested his blood sugar. Zayd didn’t want to do it. They were at an impasse.

“It’s lunch time, you have to do it anyways,” I told Zayd.

“Fine,” said Zayd. “Sit,” he pointed to the chair.

M. obeyed. I was amused by the dramatic tone and decided to watch quietly. Zayd prepped his meter, pricked his finger, and asked M. to close his eyes.

“Tadaaaaa!!!!” He waved his finger excitedly as a small drop of blood oozed out and M. looked on in wonder. “There you have it. Now can we play?”

But M. was full of questions. He wanted to know why Zayd had to check his sugar so often, what insulin was, and why his body needed it. I could sense Zayd’s frustration with the barrage of questions. I wanted to intervene, but Zayd spoke first.

“Look, I have diabetes. My body cannot make insulin like yours. I need to give myself insulin,” Zayd said. “Now, can we go play?”

If this incident stands out in my memory after so long it’s because Zayd has never taken the initiative to explain his diabetes before or since. He ignores my not-so-subtle prompts when people ask questions. He wants me to come to his class at the beginning of every school year to read a book about Type 1 diabetes so that he doesn’t have to explain it. He doesn’t even want to participate in the local diabetes walk.

Zayd has never known life without diabetes. For him it’s extremely personal, and he doesn’t really care if the people around him have questions about it. His family and close friends know about it and, for now, that is enough for him.

shutterstock_92005496_Child_Alone_300pxThis attitude has led to trouble a few times. In school, Zayd will keep running around in gym class even if he is feeling low. He doesn’t want to miss out on anything. A couple of low readings in the 40’s made him realize that he is going to miss out if he comes in low and needs to be treated for it. It’s scary for me, and I’m torn in two directions when I hear about his lows. I don’t want him to pass out in school, but the last thing I want for him to do is to stop participating because he fears a low.

If I could have my wish for the future I would imagine Zayd as a strong, independent, confident person who is not dodging questions about his diabetes but is actively involved in raising awareness of the disease. That’s my hope. But I will not force him to talk about diabetes. He doesn’t have to go to fundraisers and participate in the local diabetes chapter. He can deal with it on his own and discuss it on his terms.

He also has accepted that he can’t keep his diabetes entirely to himself. He wants to be just like the other kids in his class, and he can be. He can participate in tennis and ski camps. He can have sleepovers and movie nights with hot chocolate and endless popcorn. He can do all of that and more as long as he is aware of his blood sugar and takes responsibility for it. That means he will tell me or another responsible adult if he is feeling low, high, or sick. He will ask for help if he needs it, even if it means getting curious glances and questions. He must trade some privacy for the chance to do all that an 8-year-old kid wants to do, and it’s a trade he’s willing to make.

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Fizza Humayun studied Biology and Marketing at Baruch College in New York City. She now lives in Los Angeles and is a mother of two children, one of whom is T1.