Our Pearl

Robert L. Wagmiller, Jr.

It can be difficult to watch your child bear the burdens of a chronic condition like ichthyosis. There are moments when you feel helplessness and wish there was some way, any way, you could transfer that weight from them to you. 

But life is complex and paradoxical. Our bodies atrophy in a weightless environment. Even on short spaceflights, astronauts can lose up to 20 percent of their muscle mass because of the absence of gravity. Bearing a burden is the precondition of our strength.

Adverse conditions can at times produce remarkable things. It is the irritation from a grain of sand getting into an oyster’s shell that produces a pearl. Ichthyosis is the grain of sand that has led to so much beauty and wonder in our son Will’s and our family’s life.

We adopted Will from China in the spring of 2014 when he was 21 months old. The skin on his knees was thick and creviced. His tiny hands and feet were rough and cracked. His face, torso, and extremities were scaly and peeling. He scratched himself constantly.

When we got back to New Jersey, we began experimenting with different lotions and routines to reduce Will’s scaling and itchiness.  We tested every lotion we could find; Vaseline, Aquaphor, coconut oil, waxelene. We experimented with several different prescription lotions our dermatologists recommended.

One of the things that worked best for him was long soaking tubs in the morning and evening. To help pass the tub time, my wife bought Will bathtub crayons. He loved them from the moment he first picked them up.

Will usually draws from the time he gets in the tub until he gets out. Often, we must beg him to get him out of the tub. He draws robots, Japanese ultramonsters like Godzilla, the Bionic Booger Boy and Turbo Toilet 2000 from Captain Underpants, the Stay Puft Marshmallow Man from Ghostbusters, and mummies and ghosts. Now that he is older, he will also draw a human skeleton or the body and its organs.

In his bestselling book Outliers, Malcolm Gladwell says it takes 10,000 hours of practice to become an expert. By my rough calculation, Will is nearly halfway there already at 7 years old! Two 30-45 minutes tubs per day, for 365 days per year, for the past five years works out to about 2,500 hours of drawing in the tub alone. Add to that all the time he has chosen to draw during free time at home and school, in the art camps and after-school art classes he has attended, and he has probably spent at least another 2,500 hours drawing, painting, and sculpting.

Will’s art has come a long way from those early days when he first picked up the bathtub crayons Jenny bought him. Our family and friends and his teachers marvel at his drawings, paintings, and sculptures. This summer one of his sculptures was selected for “The Dog Days of Summer” public art exhibit in our neighboring town.

Art has become a central part of who our wonderful little boy is. It has helped him develop self-confidence and feel the pride and satisfaction that comes from doing something well. It has given him an amazing eye and astonishing memory for visual details. It has sparked his creativity and curiosity. It given him thousands of hours of happiness and filled our house with beauty and joy.

While we still wish for a cure for his and others’ ichthyosis and are ecstatic whenever a tweek to his lotions or routines relieves his itchiness and other symptoms, we also appreciate how ichthyosis is the grain of sand that produced our wonderful “pearl” of a little boy.

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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