As Mary Ann Shoap prepares for Shabbat on Friday afternoons, there is much anticipation of the evening and the weekend to come. In the kitchen, she and her nine-year-old daughter Molly are enjoying their weekly routine of baking a special dessert. Watching closely is Daniel, Mary Ann’s seventeen-year-old disabled son. Having just arrived home from school, Daniel, in his wheelchair, is strategically placed near the kitchen island so the family can include him in their conversation. Daniel has spastic quadriparesis — a disability commonly known as cerebral palsy — caused by an accident at birth. While he is very alert and aware of his surroundings, he is unable to walk, speak, or eat. He cannot control his movements or his verbal outbursts, and he needs help with every aspect of daily life. His devoted and loving parents, siblings, and a daily caregiver are available to him every hour of every day. Yet, despite Daniel’s significant needs, the family never misses the opportunity to celebrate Shabbat, holidays, and family milestones.
As the sun begins to set, Mary Ann adds the finishing touches to the meal and readies Daniel’s dinner (Ensure, a nutritional supplement), which is provided through a feeding tube. Shabbat begins when the family enters the dining room and each person adds money to the tzedakah box. Mary Ann lights the candles while Molly says the prayer. Daniel’s face lights up because he knows “his” blessing is coming. After saying “gut Shabbos” to each other, the family listens as Lester and Daniel make kiddush. Lester says the prayer very slowly and Daniel mouths the words. With help from his mother, Daniel holds the silver kiddush cup in his hand, then takes a sip of wine and smiles; he knows it is Shabbat. They all say the prayer over the challah, and then Lester and Mary Ann bless their children. Jewish music, via a CD Daniel received as a bar mitzvah gift, brings a sense of calm and joy to the evening’s rituals. Mary Ann offers Daniel a taste of mashed potatoes or sauce, but mostly, he passes the time watching and smiling throughout the meal. Judaism — and especially Shabbat — are central to the family’s life.
A Jewish family in a Jewish home celebrating Shabbat. Here’s a difference: a green grated ramp and the “handicapped parking” signs outside their suburban Boston home. After dinner, Lester moves Daniel toward the elevator at the back of the kitchen. The elevator was added seven years ago when Daniel became too heavy to be carried up the stairs. They say goodnight, and begin their ascent to the second floor and the bedrooms, where Lester will put Daniel to bed.
Mary Ann and Lester maintain a “normal” life, she says, whenever possible. Except for their summer vacation, Daniel goes everywhere with the family: on college tours, to restaurants, and once, on a cruise. “Danny reminds us,” Mary Ann explains, “to celebrate life. Like other families, we’re parents and children. While we have had to work hard to reach this point, we have moved on; we’re not bitter.” The “normal” did take some time to achieve. The family has had many challenges along the way: the cost of Daniel’s medical needs and daily care; the constant worry for his wellbeing; the need to give time and care to Molly and their oldest child, Alex, who is now in college. But Mary Ann, a trained nurse, and Lester, a cardiologist, have been able to devote the lion’s share of their time, resources, and energy to creating a warm Jewish home.
Daniel’s bar mitzvah was the culmination of his participation in a program created by Gateways: Access to Jewish Education, which enables Jewish children with special needs to have a Jewish education, in both day schools and supplemental settings. Daniel’s parshah, Bamidbar, is the story of the first Jewish census, when everyone was asked to contribute to the community as a way to count each member. The psalmist wrote, “The stone that the builders rejected has become the chief cornerstone.” (chap.18:22) For the Shoap family, Shabbat and their children — all of their children — have become the center and the strength of their lives.
I was humbled when asked to write this for Sh'ma when I was the communications and development coordinator for Gateways: Access to Jewish Education in Newton, MA. (www.jgateways.org) I am grateful to Mary Ann Shoap for collaborating on this article and for expressing her appreciation for the opportunity by saying, “Who knows whom it may reach and influence.”
This article was originally published in Sh'ma Magazine, June 2009. http://www.shmadigital.com/shma/200906?pg=16#pg16 To subscribe: 877-568-SHMA www.shma.com