Rachel Siegel's new play at WAM Theatre honors something "Special" in the heart


STOCKBRIDGE >> They were on the beach in Mexico when the phone call came through. Rachel Siegel and her husband, John, found their vacation overwhelmed by a difficult decision. The baby she was newly carrying would have Down syndrome — if they chose to continue the pregnancy.

"Everyone talks about getting the news and being devastated," she said. "We were. Your whole idea of your family changes."

Their son, George, was 2, too young to understand. Looking back at that time, Siegel found her husband a rock of love and acceptance and calm.

"He's so good at saying 'all right, whatever it is today, we'll deal with it,' " she said.

Months later on another vacation, this time in Cape Cod, their second son showed up loud and healthy, and all the hovering hospital staff had nothing to do. Siegel laughed as she remembered. Because they knew already and had chosen him, Patrick's birth was joyful.

She will share the story of that time in a workshop performance of "Special," her new one-woman show, a WAM Theatre performance, Friday night through Sunday afternoon at Berkshire Theatre Group's Unicorn Theatre.

A Great Barrington writer and actor, Siegel has performed solo and has long wanted to write her own show. She has set this play set at the time the mother receives the diagnosis and along the arc of the decision that follows.

Kenan Minkoff, co-directing with Jayne Atkinson, has helped Siegel to evolve the structure of the new work.

"Every play needs an antagonist," Siegel said during an interview at her Great Barrington home.

She realized the antagonist here is the mother's mind, her idea of herself and what her kids ought to look like.

"My mind may be perfect, but my heart is imperfect," Siegel said. "What do I have to teach this boy?"

When Siegel and her husband were making the decision about the pregnancy, they became concerned about a possible defect in the heart that is not uncommon to children with Down syndrome. They asked whether Patrick's heart would be healthy.

"The doctor said 'his heart is perfect,'" Siegel said.

And she thought — mine is not.

So in the play, she reconsiders the idea of "special."

"First it's 'I'm so special' — I'm talented, I'm smart, I went to Harvard," Siegel said. "And now I'm having a 'special' child, and what does that mean for me. And then — he's special for me."

Raising a child with Down syndrome has its own challenges.

"It takes some getting used to, and it's still unfolding," she said. "For Patrick, we're lucky with health — he's healthy, funny, delightful, joyful."

At 3½, Patrick does not yet talk aloud, and as a word-loving teacher, writer and a performer, Siegel has felt saddened. Her husband is also a teacher and a linguist.

Siegel has learned a lot of American Sign Language with Patrick, and he communicates very clearly, she said; she is confident he will talk, but it will take time.

The mother in the play imagines the future, partly based on conversations Siegel has had over the years with other mothers of children with special needs.

As she worked on the play, she has reached out purposefully. She has met a group through Whole Children, an inclusive community center founded by the families of children with special needs, in Hadley.

"It's inspiring how these mothers have supported each other," she said.

Siegel talked with one mother who almost gave her son up for adoption and had a change of heart. She has also talked with a family friend who had given up her son for adoption in the 1960s, and she has interviewed mothers through Massachusetts Families Organizing for Change, another Pioneer Valley organization. Here she met immigrant families and working class mothers and saw them taking a different approach than many people in her own background, more embracing of difference and disability.

"There's so much less self-pity," she said.

Many of the women she met here have more children, challenges in health and finances, no family support and no partner, and they are positive about their kids.

"It woke me up from something I don't suffer from alone," she said. "We have a narcissistic culture, to feel like you're entitled to have your life be easy and your kids reflect all the best things about you — until you have a kid who may, but not in the ways you'd imagined."

Siegel has faced the shame and negativity in many people's responses to disability, and she has fought for Patrick. The mother in her play has not yet had what Siegel now has — time to get to know her son.

"I almost need to write a Part II about raising him," she said. "There's so much to say."

She speaks of him with depth and gentleness.

"There emanates from him a perfect love. Jérôme Lejeune, the French physician who discovered the triplication of the 21st chromosome said people with Down have a secret source of joy. It's a generalization, but in Patrick's case, it's true. He has an acceptance, peace and joy that is healing for my heart and for any family. It's not without its challenges. They are there."

She recalls a morning when Patrick's class and George's took a field trip together, and Patrick saw George and ran over to hug him.

"It's hard not to have your heart melt," she said.

What: "Special." Created and performed by Rachel Siegel. Directed by Jayne Atkinson and Kenan Minkoff

Who: WAM Theatre and Berkshire Theatre Group

Where: Unicorn Theatre, 6 East St., Stockbridge

When: Evenings — Friday at 7; Saturday at 8. Matinee — Sunday at 2

Tickets: $20

How: (413) 997-4444; wamtheatre.com

Note: A portion of the proceeds from Saturday's performance will be donated to Berkshire Festival of Women Writers. A portion of the Friday and Sunday proceeds will be donated to Whole Children and to Community Access to the Arts.


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