Meeting Life's Challenges
Robin English, of Tampa, Fl., knows what it's like to live with the unknown. Her suspicions and concerns began when her daughter, Sarah, was just a baby.
"I knew there were problems from around two months of age. She was still like a newborn, couldn't hold her head up, hadn't smiled and she cried constantly," she says. "Everyone kept telling us that she was fine, that children develop at their own pace...I think that they were trying to make me feel better, but what I needed was for someone to acknowledge what I was seeing. Little did I know that when that finally happened it would not be a welcome event."
The prognostications that medical professionals offered were shattering. "We were told that she would be blind, have seizures and never leave infancy," she says. "We were pretty well crushed. All that I felt was sheer panic. It was like the entire world fell down around us. I just wanted it all to go away."
That was four years ago, and a lot has changed. For one thing, Sarah's development has proven the doctors wrong. She has a visual impairment and wears glasses, but is not blind. Fortunately, despite her microcephaly, she has only experienced seizures once. And, she is not an infant. Her development is slow, granted, but she is developing nonetheless.
"Sarah has occupational, physical, speech and hippotherapy--physical therapy on a horse," she says. "We are on a waiting list for aquatic therapy. She really enjoys the hippotherapy and I think it's been great for her."
Sarah crawls and pulls to stand, and will probably walk one day. Robin isn't so concerned about mobility, though.
"Her inability to talk has been the most difficult part of her problem," she explains. "I can deal with her not walking. One, there is always hope, and two, I can carry her. But her inability to talk or express her needs has been extremely challenging. Mostly when she is ill. She can't tell us where it hurts, and we wonder things like...does she have a headache? I don't know and she can't tell me."
"I once had a doctor ask me if it hurts when she urinates. I thought, you've got to be kidding me. My husband, Tom, said I should have told the doctor, 'I don't know, why don't you ask her?' I will remember that in the future!"
When Sarah was born, Robin and her husband lived in Texas while he served in the military as a helicopter pilot with the Army. This meant that it was awhile before their families realized the extent of Sarah's disability.
"At first they thought that 'delay' meant that she'd catch up. As time has gone by they realize her problems and love her all the more for them. I think the grandparents have the toughest time since they have to mourn not only for Sarah, but for Tom and me too."
"People do stare when we are out and I just try and tell myself that they are just curious. I don't want them to stare with pity. I can see it in their faces at times and there is nothing here to pity," she says. "Sarah is an enormously happy child. Don't pity her. I'd rather have questions than staring. Questions are a great chance to educate people. Sarah is just like any other child with likes and dislikes and when people take the time to talk to us they are able to see that. I smile at them. They usually smile back."
As yet there is no diagnosis for Sarah's challenges, despite years of testing. Robin still lives with the unknown, but it has gotten easier.
"In the past four years I have come to realize that things just are what they are and that's okay. Sarah will be who she is meant to be and I will be the best mother I can," she says. "She is a child with a handicap and I can live with that. I think at first all you see is the handicap. Eventually you see the child and all of her beauty first, and the handicap second. We will get through it, she and I."
Written by Carolyn Murray
