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Life with diabetes intense, emotional for children and parents

Former Miss America Nicole Johnson and her 4-year-old daughter, Ava, share a story at their home in Seminole on Wednesday. Johnson is leading a project called Bringing Science Home to help children with diabetes and their families cope with challenges that go well beyond the physical struggles the condition presents daily.

JAMES BORCHUCK | Times

Former Miss America Nicole Johnson and her 4-year-old daughter, Ava, share a story at their home in Seminole on Wednesday. Johnson is leading a project called Bringing Science Home to help children with diabetes and their families cope with challenges that go well beyond the physical struggles the condition presents daily.

When I collapsed with a diabetic low in the home supply store while holiday shopping a couple of weeks ago, my 65-year-old father was faced again with the great pain in his life. He couldn't make my diabetes go away.

He couldn't operate my glucometer and pump fast enough to stop the collapse. He didn't know the steps necessary to protect both my physical and psychological health in this moment of embarrassment.

And he couldn't escape the sense that a parent should not be helpless in the face of a threat to his daughter's life.

• • •

The holidays make this stress even more present. So much of this season's celebrations are built around food, bringing even more diabetes challenges: physical, emotional, psychological.

The continuous holiday food extravaganza is one example of how this time of year can lead to pain and conflict for the person with diabetes and their family.

It sounds simple, but it's hard to explain repeatedly that you can't have Aunt Ruth's pumpkin pie, or Sally's Christmas cookies. It's hard to stop the holiday meal and measure out your child's carb count while everyone's waiting to eat.

This column is for all the parents who find themselves helpless before a child's chronic disease. I'm here to tell you the disease is not your fault. You are always doing the best you can do. Even though it may go unsaid, your children appreciate you.

• • •

Last year, the University of South Florida and I began asking parents of children with Type 1 diabetes how they live with the disease. What is it like to have a child who needs help every day to live? The answers are always intense and always emotional.

Without exception, all parents voiced the struggle of being Dr. Mom or Dr. Dad. They cried out for resources to help them manage the struggle. A disease like diabetes doesn't go away. It is exhausting, it wakes you up at 3 a.m., and it follows you everywhere you go — to school, to the ball field, to ballet, to the holiday party — everywhere.

Parents are afraid to sleep because their child might have a life-threatening diabetic low overnight. They struggle over whether to let Susie play at a friend's house after school, since no one will be there to help with her afternoon insulin shot. They debate how much responsibility Jack should have for managing his own diet and blood sugar levels — because mistakes can be deadly.

The care required is much more than that received in a medical office. It is physical, it is psychological, it is emotional, it is learning to be an effective advocate.

The need for emotional support is intense, both for parents and the child. Parents live in a swirl of silent sorrow. People with diabetes face a lifelong battle with their disease, and also with its emotional impact every day. Friendship with others who understand the struggle helps.

• • •

USF Health is embarking on a quest to better understand the intricacies of these struggles. Through a new project called Bringing Science Home, we aim to learn how youth with Type 1 diabetes and their families cope, and which of their needs are not being addressed. This project has a research phase, a product development phase and a teaching phase. Transformation of the system of chronic disease education and patient interaction is the goal.

When I was Miss America, it became clear to me that the challenge of diabetes reaches far beyond the person with the physical condition. That became more of a reality when I had my own child.

My daughter doesn't have diabetes, but she is affected by it. When she was just 3, I had to teach her how to call 911 in case Mommy couldn't get up. At times she even pretends to have the disease herself.

And my parents continue to struggle with how to care for and support their adult child with diabetes.

Yet even these experiences have a positive side; they were the genesis of this exciting project.

Years ago I coined the term Type 3 diabetes. This is my way of identifying the caregivers, all the people who live with diabetes. You are a part of us. You are part of our struggle. Please don't give up, because we need you to survive.

Nicole Johnson is the executive director of Bringing Science Home. She has had Type 1 diabetes since 1993, six years before she was crowned Miss America. She holds a master's degree in public health from the University of Pittsburgh and is a doctoral student at USF. Bringing Science Home (www.bringing sciencehome.com) is funded by a gift from the Patterson Foundation.

Type 1 vs. Type 2

Type 1 diabetes, often called juvenile diabetes, is a condition in which the body stops making the insulin you need to survive. In Type 2, once known as adult-onset, the body can't use the insulin it does make effectively.

Life with diabetes intense, emotional for children and parents 12/17/10 [Last modified: Friday, December 17, 2010 3:30am]
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