"Mama? You know, when I see a little girl my age who has soft, beautiful skin, I pray that she is thankful to God that she has nice skin." The Baby is six years old. She loves High School Musical, The Beatles, The Monkees, kittens, ballet, working in the garden with mom, reading books, singing opera, wrapping Christmas presents and cuddling. She has beautiful curly golden-brown hair, a graceful, active body, a fabulous laugh, and gorgeous brown eyes.
She also has ichthyosis.
Icthyosis is an inherited skin condition that causes a build-up of dry skin all over the body. The build-up is worse on the hands, feet, elbows and knees, but the dryness is everywhere. Legs. Back. Scalp. Face. And sometimes it can be itchy. In the winter, if lotions isn't applied liberally after every hand-washing, painful, bleeding cracks appear. Because the skin doesn't slough off like it should, it can cause large scales on the legs, very thick elephant-like skin around the wrists and legs, and large flakes of dandruff. When the skin does slough off, it comes off in huge flakes or large quantities (some ichthyosis causes a rapid increase in skin growth) so that linens are always covered in a dust of flaky skin, clothes are coated, shoulders have to be constantly brushed off, and flakes get stuck in the hair, even when you use the best dandruff shampoos.
Because the hands and feet are most affected, people notice the dry skin right away. Think of how many times a day you use your hands around other people. Shaking hands, holding hands, writing, clapping, waving, touching, drawing, raising. Think of how good it feels to wear sandals on a warm day, or to go barefoot. Think of what it's like to wear shorts in the summer, or for a boy to run around shirtless. When a person has ichthyosis, none of these things are easy to do. Even when they don't draw comments and criticisms from others, children and adults alike, sometimes you just want to keep your hands in your pockets, or wear your shoes, or stay in long pants all summer.
The Baby isn't the only one in our family with ichthyosis. Out of our family of seven, six of us have some form of it. My husband Bo and four of the children, Houdin, Monet, Sweetheart and The Baby, all have noticeable ichthyosis. Bard, the oldest, has very mild symptoms, like dandruff, dry fingers in the wintertime, and Keratosis pilaris, which are tiny bumps on the backs of her arms.
But for The Baby and Sweetheart, the only girls in the family with serious presentations of ichthyosis, there are more issues than just the physical discomfort of the defect. They long for smooth, soft skin. They often tell me that they wish they could have skin like mine. The build-up of skin on their feet and hands looks rough, yes, but also dirty. The skin gives the appearance of a child whose hygiene is being neglected. Children on the playground will say, "EW! I'm not touching you!" or "You're gross!" or "What's wrong with your skin?" Many times, in front of the the children, people of all ages, including adults, will make comments about their skin, saying things like, "You need to wash your hands!" or "Your fingers are filthy!" or "Shouldn't you put some lotion on?" The assumption that the child doesn't know how to wash their hands or doesn't know how to apply lotion is demeaning and chips away even more at their self-esteem, negating all of their talents and abilities, and it certainly doesn't help me feel so good about myself as a mom. After all, one of the most important goals in my life is to be a good mother, and when comments are directed toward me about my children's care, as if I'd never thought to buy a bottle of lotion, it chips away at my self-esteem, too.
A few months ago, The Baby showed me a place on her toes where some warts had cropped up. Warts are viruses, and these viruses had probably cropped up because of a crack in her toes sometime during the winter. Shortly after, Sweetheart showed me some warts on her toes, too. As if the Ichthyosis isn't enough, these terrible things had to enter the scene, too. After one very expensive trip to the dermatologist, who said that my children's was one of the worst cases of Ichthyosis she had seen, we were laden with an array of lotions, some over-the-counter and some prescription. It would take a serious effort, but they could have somewhat "normal" skin, she said, if they faithfully followed a certain skincare routine.
For two weeks, we did follow the routine faithfully. A bath, then an application of this kind of cream to the face, and this kind to the elbows and knees, and then this kind over that, and then the discomfort of sleeping in plastic gloves covered in cotton ones.
But little by little, the warts disappeared and the children saw some major improvement in their skin. Little by little, patches of clean, soft skin showed through. And lot by lot, we ran out of the array of very expensive creams. When it was time to order more, I found that the one cream that helped the most had been discontinued. None of the creams can be purchased in any local store--they all must be ordered. And so, because of unavailability, money and inconvenience, the routine was broken, and the hope for "normal" skin slipped away again.
The discomfort of the skin itself is frustrating enough, but now, with Monet in a private school setting for the first time after years of being home educated, the social discomfort of having Ichthyosis is almost overwhelming. Even in a small Christian school, ridicule runs rampant and alienates and breaks young, fragile, insecure hearts. And this, in turn, infuriates the protective mother-bear mama who has to suppress her rage and advise wisely and gently. She isn't always successful. Sometimes, she just wants to go scratch someone's eyes out.
We take things for granted, don't we? Not just big things, like seeing eyes and hearing ears and working limbs and beating hearts, but little things, too, like soft, beautiful skin.
Please take the time today to talk to your children about people they know who might have something about them that seems strange and different--their eyes or their hair or their clothes or their skin--and how hard it is to live with those differences every day. Teach them good manners in dealing with people with differences. Help them to understand that those people have interests and loves and hopes and talents, just like they do, and that they can be a bright light in someone's day if they notice those interests and loves and hopes and talents, take that person by the hand, and be their friend.
