We got a crash course in EB when my first son was born, 10 years ago. He came out with no skin on the bottom of his feet. After just a day, blisters appeared on his feet and hands, and they seemed to get larger by the minute. Blisters in his tiny mouth even prevented him from feeding.
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After a few disastrous weeks, I found a reliable source of information: other moms. Through a group called DEBRA (Dystrophic Epidermolysis Bullosa Research Assn., www.debra.org), we were put in touch with moms who understood our sense of panic. They offered reassurance along with sound advice -- how to pop and drain the blisters with a sterile needle, which bandaging supplies to use and how to cuddle our son the way he deserved.
For a long time, I felt that if I was diligent enough, I could actually cure him, so I became obsessed with each new blister, bandaging frantically throughout the day -- only to see the terror in my baby's eyes each time I came at him with a needle.
I finally realized that the disease would always be two steps ahead of me and that my relationship with my son was more important than his imperfect skin.
At last I relaxed, hopeful that I could handle it and that my son would survive with our relationship intact.
Dealing with the public was another story. Stares from strangers were typical (I stared back). Accusations were not uncommon: How could you bring a baby with chickenpox here? We've been asked to leave swimming pools and theme parks. Quietly outraged, I would explain each time: "Genetic means not contagious. I can't catch freckles from you, can I?"
At other times, complete strangers showed uncommon compassion; one woman simply took the rosary off her neck and placed it around my son's.
And of course, there are the endless questions. At one point, I printed business cards to hand out to all the curious inquirers: to explain to you about my son's skin. . . .
Today, at age 10, my boy still has blisters and scabs and also warm brown eyes and a sweet voice. Along with the sensitive skin, he has a sensitive soul that loves to play cello and chess. He realizes he's different, but he's used to the stares and even answers his own questions now.
Yet there remain the questions fluttering inside me. Will my daughter have it? Will it be harder for a girl, who is judged more by physical appearance? Or will it actually be a comfort for my son to know that -- at long last -- he's not alone?
Carol Cujec is a freelance writer based in San Diego.