Enabling open dialogue

A mother shares her odyssey to discovering the miracle of her disabled twins – and she also has some advice for how parents and those surrounding them can communicate without awkwardness.

Kids in picture (370) (photo credit: (Netanya Foundation/courtesy)
Kids in picture (370)
(photo credit: (Netanya Foundation/courtesy)
Ondine Sherman’s The Miracle of Love (Allen & Unwin Publishers; Kindle edition, $11.99) may be titled like a Nicholas Sparks novel, but the subtitle – “A mother’s story of grief, hope and acceptance” – gives the first indication that this is not typical chick lit.
Raised in Sydney, Australia, Sherman met her Israeli husband, Dror Ben-Ami, at age 19 on a short trip to Israel in the midst of her world travels. For several years, they led a storybook existence as they continued their education, got married and had a daughter, Jasmine, now nearly nine.
An unplanned pregnancy – with identical twins – shook up their world a bit, but they welcomed their Israeli-born sons with joy.
However, it soon became evident that the twins were not developing normally, and so began a painstaking process of identifying the problem. The eventual diagnosis was Allan- Herndon-Dudley syndrome, an extremely rare genetic disease. There were no known cases in either Israel or Australia, so Sherman’s husband and father plunged into the hard work of seeking information on treatments and prognosis.
Now six and a half years old, Dov and Lev cannot talk or walk unaided. “There’s been no miraculous leap forward, but they are happy and still developing in small ways,” their mother reports in an interview.
As much as she prayed for divine intervention to allow her sons the power of speech and mobility, Sherman had to learn to accept their limitations. Hence the title of the book.
“I was desperate for miracles and went to all these rabbis and doctors. I know it sounds cheesy, but the real miracle is how much we adore them,” says Sherman. “I was looking for this outside miracle, yet having these loving little boys in our family is miraculous in itself.”
The book is part catharsis, part autobiography and part chronicle of Sherman’s odyssey from a starting point of denial and desperation. It presents a frank assessment of her difficulty relating to friends and family during that odyssey. She was reticent about sharing her sadness, fear and frustration, and they in turn were afraid to probe. The book is also a sort of “how to” for people on both sides of similar situations.
“I didn’t set out to instruct anybody, because I didn’t know if there was any wisdom that would come out of my writing, but there aren’t a lot of resources out there for mothers like me, and there is a lack of understanding as to how others should respond,” says Sherman. “I wasn’t trying to come up with a message but just to say how it is. By being as honest as I could be, perhaps it will help other people in their experiences.”
She has two main pieces of advice: “Firstly, keep the conversation open. Not saying anything, even if it’s out of not wanting to say the wrong thing, is not helpful. Secondly, make that extra effort to connect with the child. One of the things that is very isolating for parents of children with special needs is that others are nervous to hold them and interact with them.”
The Miracle of Love was not the book Sherman originally set out to write. An Australian publisher suggested a book about Voiceless, the nonprofit think tank she founded with her father to raise awareness of animal suffering in Australia’s factory farming and kangaroo industries. But when she began writing, the words that poured out instead expressed what was happening in her private life.
“Initially it was just for myself. Months later, I thought about putting it out there. There is something quite healing in not having secrets,” she says. “Families experience a lot of shame about disabilities and try to put on a good face, and I wanted to do the opposite – let go of all those concerns about what people would think. It was freeing.”
Indeed, she says, the book has broken open channels of communication with friends and relatives.
“I’m getting lots of insights about how much they didn’t understand and didn’t know. I seemed to have everything together all the time, so they had no idea how hard it is.”
Some of the reader feedback was in response to Sherman’s inner conflict about how much trust to put in religious personalities purportedly able to diagnose, heal or predict the future. “One Catholic mother in a similar situation wrote that they have gotten enough holy water [from well-meaning people] to fill a swimming pool,” says Sherman. “I wanted to communicate the confusion of these approaches.”
Sherman and her family went back to Australia for a couple of years, and now reside in Herzliya. “The boys are going to a really great school and have adjusted well to Israel,” she says. “The whole system in Israel is leaps and bounds above that of Australia, so we’ve been constantly nicely surprised.”
Though she decries a general lack of good bedside manner among Israeli physicians, Sherman is full of praise for the healthcare system despite its bureaucracy.
“In Australia, there is no national unified system, while in Israel the government takes responsibility for kids with special needs,” she says. “It’s a completely different ethic.”
Her family is taking advantage of programs such as a sibling group for Jasmine sponsored by the Kesher Information Center for Parents of Children with Special Needs.
“Now we’re in a different stage than the period I wrote about,” she says. “There are different challenges. For instance, we’re applying for an accessible vehicle and the boys have to be poked and prodded in order to prove the need, and that triggers a lot of emotions.
Our house is still filled with therapists and we have constant doctors’ appointments, but you get used to things. The big difference is not being in a constant panic. I am in a much calmer place where I can enjoy the boys.”
The book also illustrates that it is possible – even necessary – for parents of special-needs children to cultivate interests and activities beyond the engulfing care of their kids. Dror, a running enthusiast who has a doctorate in ecology, works with his father-in-law on the development of environmental technology investment concepts and as a research fellow with THINKK, an organization involved in kangaroo welfare research.
Sherman says that she has “taken a big step back” from the management of Voiceless, but she remains involved on a strategic level, judging nominees for grants and prizes.
She speaks proudly of the group’s achievements in Australia. “It’s making inroads. There is a big shift since we started in the area of animal protection, which was seen as fringe and radical. One of our major aims was to put it into the mainstream and get influential people involved, which we did. The issues are being discussed and debated in the media and parliament and popular culture. Of course, there is still a huge amount of work to be done.”
Sherman is contemplating a way to translate her concern for animals to Israeli society, and at the same time she hopes to interest an Israeli publisher in having The Miracle of Love translated into Hebrew. Meanwhile, Allen & Unwin Publishers will ship internationally from Australia, and the book is available in electronic form through Amazon.