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Tales from the Front
by Karen Straus

Reprinted with permission of Diabetic Cooking Magazine. © 2004 Publications International, Ltd.

This is the story of an extraordinary family doing amazing things to give a beautiful little girl an ordinary life. Because three-year-old Hannah Leigh is too young to tell her own story, her father, Doug, speaks for her. Doug, who's a school teacher, also writes on her behalf, keeping a written family history of her diagnosis with type 1 at the age of 2 1/2. Hannah's story follows, in the words of her father and mother, Mary, a nurse.

Shocked! Stunned! Saddened! These were the emotions I felt on Thursday evening, November 14, 2002. That's the day Hannah was diagnosed with diabetes.

I wanted to kick myself for the mistakes I had made with Hannah over the past several weeks. Why did I tell her she didn't need any more water to drink? Her body's cells were craving fluid, yet I told her "no more water" because she had been wetting the bed.

At bedtime, I told her no when she said, "Daddy, me hungry." I put her to bed instead of giving her something to eat. I didn't know that her body was literally starving itself to death.

Hannah's potty training was the first clue that something might be wrong.

At the end of summer 2002, we felt her potty-training days were over. We cancelled diaper service and began using pull-ups. All of a sudden, Hannah began drinking all of the time. She would always want "more." She began to go to the bathroom more frequently, and after she used the potty, she would wet her diaper—it seemed as though she could never stay dry. Nightly, she would wet her bed. We didn't know why this was suddenly happening. We became concerned.

These were the warning signs that Hannah was sick. On November 14, after a check-up, Hannah was diagnosed with diabetes. Her lab tests came back with a sugar level of 730.

We spent the weekend trying to understand, and educating ourselves about diabetes. Initially, her blood sugar had to be checked four times a day, and she received three insulin shots daily. Her carbohydrates had to be carefully regulated, so I have become a "professional carb-counter." Hannah's target range for blood sugar is between 80 and 100. Her ketones, diet, and medications are documented and reported daily to her doctor.

A year after her diagnosis, the family has seen tremendous changes in Hannah. Today she's an active, outgoing, beautiful little girl who is special to the many people whose lives she touches. She's the mascot of 12-year-old brother Ryan's soccer team and the honorary member of a Scout den. She has hiked with her family on an Alaskan glacier, and is enrolled in gymnastics. And she's an affectionate sister to her younger brother, six-month-old Evan.

In addition to her parents, Doug's mother, Elizabeth, is an important part of Hannah's care team, spending two and three days a week at their home helping with Hannah and newborn Evan.

Once Hannah's blood sugar was under control, her parents had to learn how to monitor her glucose and give insulin injections.

How does one convince a small child that fingersticks and shots are necessary several times a day? Susan Larner, R.D., C.D.E., of Bronson Methodist Hospita, helped, as did a furry friend named Rufus. Like Hannah, Rufus—a fluffy brown teddy bear—has "diabetes."

At first, when Rufus came out of his shipping box, Hannah did not like him. She ran into the other room and got her older teddy bear. By the end of the evening, though, she and Rufus were getting along great, with Hannah teaching him to do gymnastic moves such as head stands, bridges, and forward rolls. Then she wanted to give him his evening shot.

Using Rufus as a surrogate, Hannah learned about fingersticks and shots. She soon was practicing testing blood sugar and giving injections on Rufus' colorful patches that mark potential shot and testing sites. Hannah now reminds Rufus when it's time for his evening shot, which is really a way to let her dad know that she feels ready to have her own shot administered.

Thanks in large part to Rufus, testing blood sugar and getting shots aren't traumatic for Hannah. They're part of everyday life—if Rufus can do it, Hannah can do it, too. Hannah willingly gives her finger for testing, reminding her dad to "wipe my finger first." Both Hannah and Rufus put on a special band-aid when they are finished.

Another important factor that helps make fingersticks and shots "normal" and non-traumatic for Hannah is giving her some choices, such as the timing or location of the test or shot, says Larner. Hannah reports blood-sugar lows herself, letting her mom and dad know that she needs to eat or drink.

For children as young as Hannah, who are just learning verbal skills, it is important to have a key phrase that communicates symptoms, says Larner. When Hannah says, "I need to eat," Doug or Mary grab the meter and check her numbers.

Hannah is made to feel special, but not different. Her diabetes is important in her life, and accepted for what it is. What the parents refuse to do is hide behind it.

I have never been more proud of someone than I am of Hannah. She is a very strong, tough, little girl. I have seen her darkest moments—"Daddy, me hungry"—and now I see the bright future ahead of her. Her life story will not be about diabetes; it will be the story of a child who happened to have diabetes.

Please don't talk about "fighting" or "beating" diabetes. Type 1 diabetes is not a game; there are no winners. If a cure were to be found, we would celebrate. Until then, it is a medical condition that we have to manage for Hannah. No one is responsible for Hannah having diabetes. It's just part of her life, and we love her for who she is.

To learn more about Rufus and Ruby, the diabetes teddy bears and children and families with diabetes, visit www.childrenwithdiabetes.com.

July 5, 2004



                 
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Last Updated: Wednesday March 16, 2005 16:45:12
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