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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Fundraising for Gales Creek Camp! Part 2

Thanks to everyone who has donated to Gales Creek Camp so far! Look at the Six Degrees badge to the right to see how many donations we have and how much we have raised! This is great and exciting news! The only bummer is I have no idea who donated...if you want to be anyomous, thats cool, if not, please leave a comment in the comment box for this post.

Also, when you make a donation, you have an option to send an e-card to me. Please consider doing this so I can thank you!

If you are interested in learning more about Gales Creek Camp visit their website

www.galescreekcamp.org

Fundraising for Gales Creek Camp!

Check out my new charity badge at the top of my blog! I recently discovered this cool fundraising contest from another D-mom and decided to check it out for myself. I was excited to see that I could fundraise for Gales Creek Camp - which I hope to send L to this summer.

So, if you are feeling generous, please make a donation by clicking on the link on the badge. The six badges that have the most number of donations between January 18th and March 31st at 11:59pm ET will get a matching grant from Kevin Bacon of up to $10,000.

Not Content Just to Survive With Diabetes

Wednesday, January 31, 2007
The Oregonian

T he day his 2-year-old daughter, Becca, was diagnosed with Type 1 diabetes, was the worst day -- and the best day -- of Ralph Yates' life.

The fact that he was a successful doctor and an Iron Man triathlete didn't mean diddly. He couldn't cajole Becca's body to produce insulin.

He was just as angry, sad and worried as the rest of the parents in the pediatric intensive care unit, hovering helplessly over their offspring, wishing they could turn back time.

"The things that were so important to you before," Ralph Yates says, "lose all significance."

The family's goal: Keep Becca healthy. Maintain normalcy.

So, Laurie Yates baked birthday cakes with artificial sweeteners. She bought art supplies so her neighbors could give a trick-or-treating Becca something besides candy. And she attended every field trip, class party and swim meet, ever ready to give Becca an insulin shot or a snack if her blood sugar got low.

To keep it fair, the Yateses were as intensely involved in their other child's life, too.

"They're amazing people," says son Trevor Yates. "And the fact that Becca is such a complete and successful person is in a large part due to how they raised us."

For more than a decade, Ralph and Laurie Yates coped with being on edge. The couple slept with their bedroom door open. They regularly checked to make sure Becca was breathing. And when she stayed overnight somewhere, Laurie Yates showed up every few hours to check her daughter's blood sugar.

And yet, the Yateses couldn't always stop a sleeping Becca from slipping into a diabetic seizure. Becca even wrote a school essay about what it felt like to almost die.

"It broke our hearts," Laurie Yates says. "Every now and then, the disease kicks you in the teeth to let you know it's still there."

Eventually, the couple had enough of feeling helpless. In 1995, they organized a bike-riding fundraiser. The first year, Summit To Surf (www.summittosurf.org ) had 187 riders and raised $21,000. Last year, the 11th annual event had 1,300 riders and raised $317,000.

Ralph Yates is on the board of the American Diabetes Association's National Research Foundation, which is meeting in Portland this weekend. He is also the region's campaign fundraising vice chairman.

For three years, Laurie Yates has been chairwoman of the Portland Diabetes Expo, which will be Saturday at the Oregon Convention Center. (See www.diabetes.org/oregonexpo ) She also co-chaired last year's American Diabetes Association auction, the national organization's largest single-night money raiser.

Over 12 years, the couple has brought in $3 million for diabetes research. They regularly solicit large donors, speak at conventions and encourage researchers around the country to keep looking for a cure.

And though Becca is a 25-year-old college grad who has lived on the East Coast for seven plus years, they still worry daily about her health.

"When you deal with a chronic illness, you need to know there is hope out there," Laurie Yates says. "And you, sometimes, have to make that hope happen."

Becca Yates considers her parents unsung heroes. But they say the same about her and other diabetics, who are chased by death every day.

Notes Laurie Yates: "There is no 'time out' when they are exhausted, overwhelmed, or need a break."

A hero, then, is all a matter of perspective. Whether you make lemonade or curse the bitter taste. Whether you merely survive with diabetes or fight to find a cure.

"If bad stuff has happened to you, make it mean something," Ralph Yates advises. "Then there's some value to what you've been through. Otherwise, it's just a bunch of sad stories."

S. Renee Mitchell: 503-221-8142; rmitch@news.oregonian.com