Thursday, February 22, 2007

A Burden with Every Bite


Balancing goldfish crackers, apples, and insulin shots.

A burden with every bite
Grappling with a child’s diabetes
By Louanne Moldovan
February 14, 2007

In our home, food wields great power. It nourishes, of course. It also instills fear, worry, hope, and dread. It must be handled with great care, as it is conscientiously counted, weighed, measured, and timed. One moment, it is approached with anxious urgency; another, with grateful relief. It requires occasional bargaining, negotiating, cajoling, and even pleading. Now, I am a grand swindler; next, a mad scientist.

These intense emotions reside in the act of feeding our nine-year-old daughter, Alex. Just after she turned five, Alex was diagnosed with Type 1 diabetes.

When Alex’s doctor pronounced her test results positive, her father, David, fell to the clinic floor. It was Christmas Eve, and the hospital stay remains in my memory as a surreal, sleepless, three-day boot camp in diabetes training. When we prepared to leave, the doctor likened our departure to going home with a newborn. But without the joy.

From her first spoonful of organic brown-rice cereal, Alex was raised on healthy, natural food. For her, the idea of treats invariably outweighs the amount she actually eats. Alex can enjoy the occasional ice cream, sometimes even with a cone. Her endocrinologist reminded us of the importance of letting her be a child.

For Alex, eating a treat might result in high blood sugar, but this is less harmful than the psychological and emotional toll its forbiddance could cause. I will always remember the first birthday party we attended after her diagnosis. I made sure her slice of cake was a small one. She stared at it in awe; then, with a quiet joy, she ate every crumb. To finish, she picked up the plate and licked off every shred of frosting.

Alex receives insulin injections for each meal and most snacks. We have to carefully calculate the number of carbohydrates in her food and then draw up the appropriate amount of insulin. This is where the total carbohydrate figure listed under a package’s nutrition facts is critical. Protein is a “free food,” and does not need to be counted.

Instead of “picky,” Alex prefers to call herself a “selective” eater. As a professed vegetarian — she is a big animal lover — her menu is somewhat limited. We routinely use a scale, measuring cups, and our tired brains to compute the number of carbs Alex will eat in her meal or snack.

But Alex, being a child, doesn’t always eat what is given her. If she doesn’t finish, we go into a repressed panic, offering any variety of potentially appealing carbs. This is surely one of those times where my more laissez-faire approach comes into play, as I suggest an (organic) cookie or half a piece of toast, while her dad proposes a chunk of banana or cup of milk. Only rarely does she wish she could eat more, but not enough to warrant getting another injection.

Restaurants, parties, holiday meals, or event vendors present special challenges, as we are reduced to guessing as closely as possible what the carbohydrate count might be in a certain food. This hasn’t gone very well for us; we usually wind up with frighteningly high blood sugars. Again, with my more lenient attitude I will try not to make a big deal about an extra piece of bread or drink of lemonade.

However, there are consequences to pay for even the slightest excess of carbs. When Alex has low blood sugar, she feels faint, weak, and hungry. When her blood sugar is high, it is as though another personality overtakes her. She becomes whiny, emotional, and inconsolable.

One day Alex told me, “Mommy, when I’m low, it’s in my body. But when I’m high, it’s in my feelings.”

Later, when I berate myself for my indulgence at Alex’s expense, a silent, uneasy concern over such long-range complications as blindness or heart, liver, or kidney disease looms in my mind.

The other night, when I was about to give Alex her sixth injection of the day, she looked up at me and said, with utter conviction, “Mommy, don’t give me a shot. Please don’t give me a shot.” She was not whining, she was not wailing. Soberly, simply, she made her plea. And she repeated it again, and again.

Our child would simply like to be able to grab an apple or a cracker and eat it spontaneously — without interruption, without it being weighed and sliced down to an acceptable amount, without poking her finger or injecting her arm, without grave consideration.

I could only hold my daughter in my arms and tell her I was sorry. And I wept, tears that had come before, that will surely come back again, as reliably as hunger in an empty belly.

An award-winning screenwriter and recipient of the 2005 Oregon Book Award for drama, Louanne Moldovan is the founder and artistic director of Cygnet Productions, a literary cabaret theater company in Portland, Oregon. Currently, she works as a writer, actor, and director for several production companies in Portland.

The Needle
Alex’s father, David Morrison, founded The Needle, a small shop that donates all proceeds from its sales of used books, household items, and vintage oddities to juvenile-diabetes research and education. 1420-A SE 37th Ave, Portland, Oregon. 503-234-7662.

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1 comment:

Chris said...

Wow..talk about "in a nut shell"
That was amazing.
It is weird how when i read an awesome thing like that i want everyone who is not affected by this that knows us to read it.
Nice