A Place at the Jewish Table
JAN SCHWARTZ
Aon Friday afternoons, there is much anticipation of the evening and the weeks Mary Ann Shoap prepares for Shabbat
end 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 seven-teen-year-old disabled son. Having just arrived
home from school, Daniel, in his wheelchair,
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 the other children.
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.
Jan Schwartz is the
communications and
development coordinator for
Gateways: Access to Jewish
Education in Newton, Mass.
( www.jgateways.org). She
thanks 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.”
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
June 2009/Sivan 5769
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the prayer over the challah, and then Lester and
877-568-SHMA
Mary Ann bless their children. Jewish music,
www.shma.com
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.
