Imagine swimming the Kinneret holding hands. That’s how Ayelet Wilk has done it for the last nine years.
Meet Ayelet. She’s a petite brunette, with cinnamon hair and tawny eyes. She’s quick to share a hug with someone she’s just met, like me or a bawling toddler in the daycare center where she works. She lives with four young female roommates, is studying piano and sings Hebrew songs in a chorus.
Ayelet is 25, and she has Down’s Syndrome.
Ginger-haired Mom Rachel Wilk grew up in Connecticut until her family moved to Rehovot when she was 11. She earned a degree in special education and married South African-born accountant Mordechai Wilk. They live in Efrat and have seven children. Ayelet is the sixth.
“My first five children were dark-haired like my husband, and when I first saw Ayelet I thought – at last, maybe she’ll be a redhead like me. Her Apgar score was 9-10. But when the delivery-room staff called in a pediatrician, I asked if anything was wrong. They said there was a suspicion of Down’s Syndrome.
“My husband had stepped out for a few minutes to move their car. When he returned, he found me in a state of shock. I told him they suspected Down’s Syndrome because our baby had a single line on her palm, instead of the usual three. He turned over his hand and showed me his palm. It also had a single line.”
Indeed, one out of every 30 people has a single palmar crease that runs across the palm. It usually means nothing, but I can indicate one of 10 different syndromes. Down’s Syndrome is at the top of the list.
In Down’s Syndrome, a person has 47 chromosomes instead of the usual 46. The extra chromosome causes problems.
“I already held my beautiful baby, nursed her and loved her. She was mine,” says Rachel.
“The doctor asked me what I knew about Down’s Syndrome. I told him I was a special education teacher. ‘Terrific,’ he said and hurried home.
“For the first time, after giving birth, I went to a post-natal recuperation baby hotel. I asked to see the doctor on duty and told him there was a ‘suspicion of Down’s Syndrome’ for my baby. He told me that there was no suspicion – that my baby indeed had Down’s Syndrome.”
"The doctor asked me what I knew about Down’s Syndrome. I told him I was a special education teacher. ‘Terrific,’ he said and hurried home."
Rachel Wilk
Rachel and Mordechai named her Ayelet, reflecting a midrash (an exegetical story) that Rachel was studying. According to the midrash, as Rabbi Chiya, Rabba and Rabbi Shimon ben Chalafta were walking in the Arbel valley early in the morning, they saw the light before the break of dawn (ayelet hashachar). Rabbi Chiya said, “This is how the Redemption of Israel will be: At first it will be step-by-step, but then it will become stronger.”
With love, they would learn to care for and nurture Ayelet step-by-step.
Nothing to be ashamed of
AS CONGRATULATIONS poured in for their new baby, Rachel made sure her congratulators knew that Ayelet had Down’s syndrome. “We decided this is nothing to be ashamed of. We didn’t hold up a sign, but we made sure to tell a friend who is good at spreading the news near and far.”
Before they could focus on the full ramifications of their daughter’s condition, there was an immediate crisis to deal with. Ayelet was diagnosed with the most common heart defect in children with Down’s syndrome: atrioventricular septal defect (AVSD), a large hole in the center of the heart. The urgently needed surgery and recovery dominated most of the first year.
After that, there was lots of home physical and occupational therapy. “That often came with homework for us, but I decided that I wanted to be Ayelet’s mother, not her therapist,” said Rachel.
When they transitioned from home therapy to therapeutic group therapy, the unbidden comparisons began. “You see another child with Down’s syndrome walking better or talking better than your child and you feel frustrated,” says Rachel. “One day I came home and heard myself saying that Ayelet excelled today in the group – that she was great at eating jello. I realized that you have to accept your child’s strengths and weaknesses and go with that.”
Parents of Down’s syndrome children are vulnerable to trying the many –and sometimes pricey – “systems” and “quick fixes” offered them, says Rachel. “At the beginning, you hear of a German program, or a patterning program and you run to try it.”
WHAT DID help Ayelet with her physical development from the very beginning was hydrotherapy. Even as a toddler, she loved the water.
In Gush Etzion, where the Wilks live, the love of swimming and the desire to do good deeds have come together in a unique project called Swim4Sadna. It’s a swim across the Kinneret, just for girls and women. Because of issues of modesty, and because the annual Cross-Kinneret Swim is always scheduled on Shabbat, Vivienne Glaser, a former champion swimmer from London, started the Swim4Sadna sporting event 12 years ago, overcoming the formidable bureaucracy.
Swimmers raise money for the Sadnat Shiluv (literally “Integrative Workshop”) community for special-needs adults. Located in Gevaot, a suburb of Gush Etzion, special-needs young adults live with other, mostly young, families. Each year a project is designated as a fundraising goal. This year’s goal was a renovation of the music room.
In sync with the Sadna’s inclusive spirit, the swimathon isn’t a race. There are rafts along the way where the faster swimmers have to wait for slower swimmers to catch up.
At the end of May, Ayelet was among 424 other swimming women from Israel and abroad. The numbers also include “The Wilk Family Swimmers”: mom Rachel, Ayelet’s three sisters, aunt and cousins.
“I was scared getting in the water the first time,” Ayelet tells me in between helping with the dozen or so toddlers in the wooden hut daycare center in Gevaot. She has patience for the noise and crying, for picking up toys and getting down on the floor to build with blocks and make motor noises for tractors.
When one toddler cleverly unlatches a wooden door, she picks him up in the nick of time to save his small fingers. She sings Hebrew songs to distract and calm them when they are irritable.
“I love kids and I love swimming. I make sure that I’m the first in the water. My teacher holds my hand and together we swim the whole way across,” she says.
Step-by-step, stroke-by-stroke.
The writer is the Israel director of public relations at Hadassah, the Women’s Zionist Organization of America. Her latest book is A Daughter of Many Mothers.