Your child has been diagnosed as severely brain damaged. They cannot predict whether he will be able to walk or talk. You've heard through the grapevine about some wonder doctor, say, in South Africa, who's had some amazing results with CP (cerebral palsy) children. You will have to spend four months there, with a total cost of about $20,000.
Wouldn't most of us go ahead with this very difficult undertaking? Even if it means leaving our other children or jobs behind for such a lengthy period. And what about finances? We'd use up all our savings, borrow, anything. What doesn't one do for their child!?!
About 10 years ago, when my husband was still in Kollel, I taught learning disabled children as a para-professional. Among other things, I learned one major lesson from that experience. Those students whose parents accepted their disabilities, were much happier, well adjusted and sociable than their counterparts. I remember one child in particular, Ruchy, we shall call her, who was brighter than Malky, (also fictitious name), but was such an angry, bitter child. She got frustrated easily, and was suspicious of other children. I knew their mothers well. Malky's mother was an intelligent woman who learned to accept Malky for what she was, and went ahead with what she had to do. (In fact, the resource room was her brainstorm.) Ruchy's mother, on the other hand, was bewildered and confused. Why did this happen to her? She was always an “A” student herself, a teacher later on. She brought me her older daughter's perfect report card to prove to me.....what?! I don't know. She just couldn't accept Ruchy's disability.
It's not an easy thing to accept. I learned this (quite ironically) the hard way. This happened two years ago when my Moishie was born. Moishie was born on an Erev Shabbos, two years ago. The doctors noticed right away that he has a brain damage. He was transferred immediately to a Manhattan hospital for surgery. There they would perform many tests to determine his exact diagnosis. I found myself all alone that Shabbos, with plenty of time to think. I remember while singing zemiros to myself, I burst into tears. Will my baby be able to sing zemiros? What will he be like? Will he just be learning disabled like Ruchy and Malky, and my other former students? Will he be totally retarded? Will he be able to walk, talk, communicate...... Suddenly, all “abnormal ‘” people that I've come across in my lifetime, marched in front of me. There was my neighbor's cousin, a teenage girl with crutches, so unhappy, so self-conscious, and so, so.....nebechdig. Then there was the boy in my son's class, the one in the wheelchair. He is the smartest boy in his grade, a genius literally, but such a sad boy. On the contrary, there is the other boy in the same school who has cerebral palsy. He uses some kind of a walking aid. A happy, self confident boy. He even plays tag with his walker. Then there's Leah Miriam. I almost forgot about her. Her family is in the same bungalow colony as my sister. She's about 12 years old. When she was a baby the neurologist told her parents: “Listen, this baby will never walk or talk. Don't get too attached to her, just put her in an institution.”
They didn't listen. They kept her.
Leah Miriam has had a lot of therapy. By now she walks (using a walker), and talks (she still needs speech therapy), and loves to read. Leah Miriam's mother handles it all very intelligently. She doesn't worry about shidduchim. It's all preordained anyway. She talks openly about her daughter, (not too much though; you don't have to give people the MRI results). No wonder then, that the mothers and children in the bungalow colony feel comfortable with Leah Miriam, and have learned to accept her. They talk to her, get excited with her new accomplishments and so on. So in spite of Leah Miriam's physical and mental disability, she is a happy child. People do not cringe at the sight of her. That was it!! After much introspection, I had to admit to myself that I do (or did) cringe at the sight of someone in a wheelchair. But was it the wheelchair that made me cringe? I've seen people boarding buses on wheelchairs. That never seemed to bother me. Or the blind man who lives around the corner from our house. I see him going to work every morning while I wait for the bus. I never cringe at the sight of him either. Why? I asked myself. And I knew the answer. Because the person boarding the bus and my blind neighbor were independent and self confident. And that was it!!! I knew what I have to do for my child! MAKE SURE HE IS HAPPY AND SELF CONFIDENT! Moshie is now almost two and a half years old. He is a delightful child. Although he is somewhat different, my other children do not seem to notice. They never feel ashamed when friends come to visit. He is learning how to walk and says many words. He can say “bye bye” and “Zeide” but he cannot put the two words together yet, “bye bye Zeide”. Will he know his Gemara later on? We fervently daven to Hashem that he will, but we try not to think about it too much. Right now he's a happy, sociable child. And I'll try to keep my promise, to accept and love him no matter what! What wouldn't we parents do for our children? Don't we spend hours with therapists, doctors and so on? Wouldn't we run to South Africa, Honolulu, anywhere, so that our children grow up happy, independent individuals? My friends, the best remedy for our children doesn't cost thousands of dollars. We don't have to cross oceans to get it. We have it right at our doorsteps. We have to learn to love and accept our children for what they are. For they can sense immediately if they are a disappointment to us. Accepting our nisyonos is not only mandatory according to Torah and mussar. Accepting our children with love will make them grow self confident and happy, no matter how severe the disability. May Hashem help us all in our enormous task.
May we see much nachas from our children. They should grow up ‘L'Torah, L'Chupah, and L'Maasim Tovim, Amen!
This article first appeared in issue #5 of Down Syndrome Amongst Us