Food for ThoughtApril/May 2010 Issue

Balancing Act: Celiac Disease

Keeping both kids front and center

Katie with brother Mike, waiting to order<br> at a diner that serves gluten-free food.

Katie with brother Mike, waiting to order
at a diner that serves gluten-free food.

This past Christmas, my wife and I gave Katie, our 12-year-old daughter, a new cell phone. Her excitement upon opening her gift bordered on hysteria.

My son Mike, who is 10, did not get a cell phone. After his sister’s ear-popping squeals died down, Mike made a great case for having his own. “Dad,” he said, “I have type 1 diabetes and celiac. If anyone in this family needs a cell phone, it’s me!”

His logic was iron-clad, of course, but I explained to him that since Katie is older, she gets to do things first. She gets the cell phone first, she’ll learn to drive first, and she’ll (gasp!) date first.

But the real reason why Katie got a cell phone goes beyond simple chronological age. It was a small reward, a way for us to recognize the sacrifices Katie makes day-in and day-out.

Years ago when Mike was diagnosed with type 1 diabetes, our family had to make adjustments to our schedules to accommodate his condition. For example, we couldn’t leave him alone at soccer practice for fear that he’d ‘crash’ on us (become hypoglycemic). So my wife stays at the fields while Mike’s team practices.

Unfortunately for Katie, she has to stay with mom at Mike’s practices, too. She also has to stay at Mike’s basketball practices. And his guitar lessons. On the other hand, for Katie’s sports and other outside endeavors, we find ourselves dropping her off so we can run errands we never have time to do.

Since Mike was diagnosed with celiac disease, the sacrifices Katie makes seem to have grown exponentially. No longer do we grab a quick bite at Katie’s favorite fast food chain. Most meals must be prepared. No longer do we steal away for a day trip. Everything must be planned for and packed. ‘Spontaneity’ is a concept this lively 12-year-old girl is becoming unfamiliar with.

And if that weren’t enough, we find ourselves putting an additional level of almost parent-like responsibility on Katie. When my wife and I go out for an evening, Katie is identified as the babysitter’s ‘go-to’ person to help manage Mike’s food intake and glucose levels. When the kids are outside playing together, we rely on Katie to keep an eye on her brother and look for signs of low blood sugar. And Katie needs to know what to do in case he crashes.

We’ve read that the rigors of both celiac disease and diabetes management often make the affected child a more responsible and more pragmatic adult. But what long-term effect do these rigors have on the siblings? Are they more responsible, as well? Or are they more resentful?

While only time will tell, I am beginning to sense that these experiences are having a positive effect on Katie. I see that she is a better student. I see that she seems to enjoy being the ‘go-to’ person and happily takes on responsibility. I know that she is more aware than most kids her age of the challenges others face and that she has a big capacity to love and care.

But the most telling sign that these circumstances are helping Katie develop into a vibrant young adult is how she has grown in the past few years. She has a sparkle in her eye and a special bond with her brother that many siblings don’t have.

Yes, we’ll still reward Katie with material things now and then because she deserves it. But we know our words and actions are more important to our children than any trendy item could ever be. So we need to work extra hard at making sure that our appreciation of Katie comes through loud and clear, each and every day. Not just for what she does—but, more importantly, for who she is.

With this in mind, I handed Katie a draft of this essay. She took it and read it in silence. When her eyes lifted from the page, they were filled with tears. “Thanks, Dad,” she said.

Thank you, Katie. 

Tom Charla lives in Glastonbury, Connecticut, with his wife and two children.

 

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