After the Rain: Seeing the World Through a Special Child's Eyes
When seven-year-old Seppe Wittebolle of Belgium was ten months old his mother and father brought him to a new pediatrician to find out if his constant reflux was being caused by a digestive disorder.
"We went to see him before our 3-week summer holiday...he started measuring his head, then tested Seppe's reactions. Our local doctor had been somewhat uncomfortable because Seppe's head circumference fell off the curve, but as it clearly followed its own curve, we weren't too worried," his mother, Saskia, remembers.
The new doctor looked at them and said, "I'm getting you some appointments at the hospital -- your child's head is too small, he will be mentally retarded."
"The only thing I remember is being outside again, with my ten month old baby in my arms. It was getting dark and starting to rain. I see myself crying and asking my husband 'what is he saying?' Neither of us remembers what we did those endless three weeks of holiday. We went on day trips but we do not have memories, nor do we have photographs."
Since that day, Saskia and her husband, Francis, have gone through the slow process of uncovering the microcephaly diagnosis. Initially, since the first brain scan was normal, they were relieved and felt it meant that he would be free of problems. In time, they learned that Seppe has mild autism and is physically and cognitively delayed. Apparently, the cells of his brain did not migrate properly during gestation.
She says that she has found the process of coming to terms with Seppe's special needs to be a long one. "I've had the pain, the utter desperation, the mourning and the anger phase." Saskia recently went through a very serious scare. An area of his brain was suspected of having a tumor.
During the long wait for the MRI results (which revealed he is tumor-free) she was angry at the world. Now that the news is good, she says, "I'm so grateful for not having to take this ride on the rollercoaster. We look at Seppe having fun, and we smile."
Through it all, she has remained a devoted friend to other parents like her that she met in cyberspace. Saskia began hosting a listserve that connects many parents of children with microcephaly when the group's original moderator decided to end his involvement. She not only keeps it operating, she is a regular voice of compassion and understanding with an honest eloquence. She soothes spirits and champions accomplishments on a regular basis.
She says, "I'm not special. I'm just a mom trying to do what's best for her child. People often want you to be special, but most parents would be doing just the same if they were told their child was special needs. Seppe has given me the ability and skills to enjoy the small things in life. It's a cliche phrase but it is true. I wouldn't have realized that a word pronounced by a severely handicapped classmate of my son would not only make my day, but make my week and would become a very precious memory."
"Seppe has so many gifts, his hearing is much better than ours, he smells much better than we do, he feels nature -- he has brought me closer to the 'untouchable' things in life."
Written by Carolyn Murray
