Small, daily miracles

2008-03-28 00:00

What do you do when a doctor turns to you and says: “Your child has a brain abnormality”? How do you plan your child’s future when he continues with the statement: “Children like this do quite well”?

Celeste and Bryan Smith have been in such an invidious position. The Smiths are Pietermaritzburg born and bred. Bryan is an electronic engineer in the city and Celeste is a music teacher at St Charles. Seven months after their second son Mitchell was born, they were concerned that he wasn’t developing as well as his older brother had. They decided to consult a neurosurgeon. After extensive examinations and tests, this is what he said to them. Only those who have been in the same position can begin to contemplate what went through their minds when they heard the doctor’s assessment of their baby.

Initially the news didn’t mean much to the Smiths as they didn’t understand the impact on their lives those words would have. “We had never been exposed to children or adults with disabilities,” Celeste Smith explains. “We had no idea what to expect or what to hope for. We had no idea of the extent of Mitchell’s disabilities. We couldn’t appreciate what he meant by saying ‘an abnormality in the brain’. And we asked ourselves: ‘children like what?’ All we wanted to know was how this diagnosis was going to affect Mitchell and the rest of the family.”

Celeste Smith was teaching at Scottsville Primary throughout her pregnancy, but she suspected there was something not quite right with her child soon after he was born. “I think a mother always knows,” she says. “Other than the fact that I had a feeling of foreboding before his birth, I noticed severely delayed milestones. I’d had my son Ayden before Mitchell and I knew what his abilities should be for his age. At six months Mitchell wasn’t able to pick up toys or focus on anything as his eyes would dart around all the time. He didn’t lose his newborn reflexes either and by seven months his hands were still in tight fists. Usually children his age begin to play in the mid-line by holding up objects with both hands while in a lying down position. Instead Mitchell’s body lay very flat. Neither could he move his arms up into this position. He also made no sounds other than crying.”

When the Smiths finally decided to take their son to the neurosurgeon, they had very real suspicions that things weren’t right with Mitchell. I asked Celeste Smith if there was any better way to have your worst fears confirmed.

“There is no way to deliver this news gently,” she answers. “The doctor was kind but matter of fact. I suppose he needed to give us the worst-case scenario to prepare us for the worst. Then, when you are given a diagnosis that is not quite as bad, you are able to accept it more readily. I do think, however, it would be useful for doctors to point parents in a helpful direction. For example, give them a telephone number of someone who has been through the same thing or an association that can give you support.

“All we wanted was to see an older child with the same diagnosis so that we could prepare ourselves a little better.”

The Smiths were lucky enough to find a couple with a child with similar disabilities. Just seeing how the parents and the child coped gave them courage to face their own future with Mitchell. They also joined a support group for parents of cerebral palsied children.

Five years down the line, Mitchell has learnt to walk and is trying out his use of language slowly but surely. Celeste Smith has written a book about her family’s experiences of living with a child with severe brain damage called So Now What? She hopes it will help parents who face similar difficulties.

“More than anything, I’d like to tell people to take things one day at a time,” she says. “We have learnt that the brain is a mystery and no one can give you an ultimate prognosis. We don’t look far into the future. We expect small, daily miracles from him, like being able to point with a hand instead of just looking at something with his eyes.”

Hearing Mitchell say “Mama” for the first time was also a miracle for Smith who attributes all the strength she and her family have to their Christian faith. She advises parents who have a child with a disability of some sort to work on their marriage. “Don’t cast any kind of blame on your spouse for your child’s disability,” she stresses.

“When you trust your life partner, dealing with a disabled child becomes a little easier. Don’t, through guilt, work so hard with the disabled child that your husband, wife or other children feel neglected. Find a support network of people who can help relieve you and, even though I’ve found it very hard to do this, ask others for help.”

Even with a good support system, life isn’t smooth with a disabled child. For one thing Smith feels on show because of the stares Mitchell gets wherever they go. So she’s decided to educate those who stare. “People change when they understand what’s wrong with Mitchy,” she says. “Most don’t try to make contact but there have been a few individuals in shopping centres who have warmed my heart without even saying a word. One man came up to Mitchy and ruffled his hair. Another woman walked up to the buggy and placed her hands on either side of his face and just said ‘Precious!’ We have some beautiful people in this world.”

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