Welcome to the Workshop on Parental Hope,
When Liesje, my daughter with Spina Bifida was born the doctor said that she was not viable. That she would die soon. He showed me anX-ray explaining to me that it was clear that she had no brainanymore. That she would never speak or recognise me, that it was better for her as well as for us parentsto leave her and not to destroy my life and that of my wife and other children.
The only thing I could see on the photo was the scull of my unborn child. A skull of a dead’s head.
He showed me photos of children with the same disability. Black and white photo’s with the eyes covered like accused criminals in the newspaper.
“No, you can not want this for your child. If you treat the child you will only prolong her suffering. This would be selfish and egoistic. She will die anyway.”
The doctor presumed an impassewithout hopeand by killing all hope, he made us passive and down. The doctor gave us an image of her disability with the aim to destroy the love,the natural love we as parents felt for our newborn child. The love so needed as a couple to survive this difficult period, the love we needed to comfort and support our child.
It was my wife, who from the very start did not believe the picture the doctor confronted us with. Her Liesje, the cute girl in the incubator was different. She looked with love to the child and saw her daughter and not only her disabilities. This made that the words of the doctor paralysed me more than her. She was a mother. And mothers are strong.
It took us 3 months to get the correct information that led to the available treatment. To come out of this paralysing hopeless impasse.
Liesje was operated much too late and that made her disabilities worse than at birth, but from that moment we saw a future: treatment created expectations and hope.
She became a happy girl, full of life, she was loved and clever, went to an ordinary school and youth movement. She probably became the happiest child of my whole family.
I learned a lot from other parents. I will always be thankful to Willy, father of a boy with cerebral palsy who was much more disabled than my child. He spoke with so much love and pride about his son that I learned to see his beauty too.
I understood that speaking proud of my child would help to overcome people’s fear to cope with her. We need to be proud of our children, believe in them, because if we do not believe, who else will?
The destructive image the first doctor gave us was replaced by stories of other persons having the same disability. Stories of persons with Spina Bifida doing sports, enjoying life, becoming a famous concert conductor or even a minister. It gave us hope. And hope is needed, because education in a long term project. Who spoils the child will create dependent and complaining adults.
In the IF self-help groups I understood that the information of the doctor
was only one view on her disability. All the people I met in the parent groups had the same disability as my daughter, all had severe forms of Spina bifida.
But they succeeded to build fulfilling lives.
-Olga is a psychologist and just graduated as a medical doctor in the Netherlands.
-Sara, Italian, is a medical doctor too,
-Guro became a minister in Norway,
-Vicky is a Guatemalan lawyer and married last month
-Eli is my IF vice president.
It all depends the way you perceive. The doctor had a hopeless medical view, reducing a human being to its medical deficit, the parents view is focusedon hope and happiness.
It is all about a vision on quality of life. What is quality of life? When you sit down and listen to persons with a disability you will see that the quality of life depends on meaningful work, on love, on friendship, maybe on a good book, on music or art. Just like for you and me.
When a mother from Dar Es Salaammeets a mother from Moshi, one will notice the similarities rather than the differences between them. They recognize the issues which bind them because their conversations are based on their aspirations and dreams and also because they can share their mutual fears. Often they exchange very simple solutions for complex problems.Tribal, social, cultural or religious distinctions hardly matter
in these deep humane contacts. The feelings of hope and despair are very similar.
Our parent groups and IF should be places of hope where we gain believe in the potentials of our children and get ideas and support to overcome the daily problems related to the disability. As proud parents it will be us who will present our kids to the teachers. Our believes will help them to give it a try. Also teachers need to believe and can gain power out of our parental hope.
Pierre Mertens
President IF
IF African Workshop 2008