It was a normal pregnancy. It was a normal delivery. Nell and Michael Valentine both had children from previous marriages, but this child — Gabriel — was created by their shared love for one another. Together, their co-mingled DNA created life.
Nell Valentine stood at the patio door of their Starkville home Wednesday afternoon and watched her husband playing with Gabriel. She is always watching, always worrying. Being a mother is a full-time job, but the devotion Gabriel requires is so intense that privately, her husband admits he’s in awe of her strength.
As she watched them play, she said she couldn’t do it without Michael. She calls him her angel.
Gabriel, 3, has a rare genetic disorder, junctional epidermolysis bullosa, which makes his skin so fragile that the slightest bump or friction causes it to blister like that of a burn victim. The esophagus, stomach, lungs and other body parts are sometimes affected, and fingers sometimes fuse together.
There is no cure; there is only wound care. More than half the affected children die before age two. Few live beyond 30, and the Internet is filled with memorial pages for those who did not live that long.
People call them “butterfly children,” because their skin is as fragile as a butterfly’s wing. Only one in 50,000 children are born with the disorder, and only one in 3 million children is born with the type Gabriel has. It’s caused by a recessive gene, and Nell and Michael Valentine carried that gene. There was no way they could have known; there is no test that could have predicted this future of pain — and enduring joy.
Nell Valentine’s eyes glistened with tears as she talked about the daily realities of Gabriel’s world, but when she walked outside to join her husband and son, there was no trace of sadness. She smiled as she pushed Gabriel in a special swing that has an enclosed seat to keep him from falling.
Gabriel was singing, making up silly lyrics along the way. Tickled by his own mischievousness, he started to laugh, high-pitched, toddler giggles that seemed to bubble up from somewhere deep in his soul, enveloping his parents with the love that sustains them.
Life is what it is, Nell Valentine said. And this is their life.
A daily struggle
They realized something was very wrong almost immediately after Gabriel was born. He was given a vitamin B-12 injection, and when the nurse pulled the bandage away, his skin ripped.
At first, they thought he had an adhesive allergy. After a year of misdiagnoses, they finally had an answer. Like all mothers, Nell Valentine wanted to do what was best for her child, so she spent every spare moment learning as much as she could about EB. Because it’s so rare, she often has to help doctors understand.
Slow-healing wounds cover much of Gabriel’s body. His naval is still open from birth. His chin is red and bloody from sores he incurred as an infant, when normally harmless baby drool inflamed his fragile skin.
It is a daily struggle to keep new wounds from forming and keep the current wounds clean to prevent sepsis. Every day, sometimes several times a day, his padding and bandages must be changed. Every night, Nell Valentine spends an hour and a half or more bathing Gabriel, debriding his wounds as he cries.
A typical day begins with medications and bandaging, then she takes Gabriel’s older sister, Alex, to Armstrong Middle School, and she takes Gabriel to preschool at First Presbyterian Daycare, where she has taught the staff how to tend to him.
There are some who say he shouldn’t be out in public, and they make cruel remarks about his appearance, but she believes isolating him from the world, depriving him of social interaction, would be even greater cruelty than he already endures.
So she takes him to daycare and reads a story to him before she leaves. Then, she goes to her job at Mississippi State University, where she researches reasons children begin smoking and ways to stop teenage tobacco use. She examines information collected by the Mississippi Tobacco Data Unit and tries to figure out things like whether smoking bans have an effect on tobacco use.
“She’s tireless and devoted,” Michael Valentine said Wednesday morning. “She spends all of her time and efforts taking care of children. Her devotion to our three-year-old is amazing.”
But he is equally amazed at how much time and devotion she gives to his two children, 18-year-old Heather, and 13-year-old Griffin; and her own daughter, from a previous marriage, Alex.
She takes Gabriel to all his medical appointments, and even when he’s at the daycare, she’s only three minutes away.
Either she or her husband pick the children up from school, then they come home, begin the bath and bandaging routine, eat supper and go to bed. There’s little time for anything else.
She never complains, Michael Valentine said. She doesn’t complain when she has to get up in the middle of the night to change bandages, and she doesn’t ask, “Why us?” Recently, she herniated a disk in her back when she lunged after Gabriel to prevent him from falling.
Through her own pain, she kept going to alleviate that of her child. More than anything, she wants him to know he is loved.
He sleeps each night nestled between his parents where they can tend his needs and soothe him with kisses. She spends every moment she can with him, because she knows the time may be so very brief.
“It breaks your heart when your child is hurting,” Nell Valentine said. “You gulp and say, ‘What can I do to make it better?’ Our little boy is so loved. That may be the best thing for him.”
In the little spare time she has, Nell Valentine works as a passionate advocate to raise awareness about EB. She talks to other mothers online, sharing tips and offering comfort. When she found a doctor who had written a book about EB, she drove to Vanderbilt University in Nashville to meet him.
She lives with the knowledge that everything she does still may not save Gabriel’s life. She doesn’t take a second of the day for granted.
‘You fall in love’
But this is motherhood. It is a bond like no other.
“It’s falling in love in a much different way,” she explained. “You fall in love every time they smile, every time they pick flowers for you, every time they accomplish something on their own. It’s watching a part of yourself grow and thrive.”
The family romped in the backyard, tossing a soft football as Gabriel loped after it. He tripped and fell and lay crumpled on the soft grass in a fetal position as his parents rushed to him. His father placed his hands carefully on his body, trying to find a wound-free area to grip as he picked him up.
Gabriel whimpered, and Michael Valentine lightly tickled him until the tears were replaced with a smile.
As the sun slipped behind the trees and darkness began to descend, a sound rang out across the suburban landscape, soft at first, then louder, carried by the wind. It was the sound of laughter. Beautiful, musical, infectious laughter.
It was the sound of a child that is loved.
Carmen K. Sisson is the former news editor at The Dispatch.
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