Well Arts show looks at raising children with cerebral palsy

COURTESY OF WELL ARTS - Five of the six women participating in the Well Arts Fierce Love project: (bottom, left to right) Susan Cushman, Danae Davison; (standing, left to right) Michelle Haines, Nicole Silverman, Jennifer Peterson. Not pictured is Ann Connor Griffin.It was many years ago now, but Michelle Haines remembers when her son was diagnosed with cerebral palsy.

The day after the diagnosis, “my vision of him changed” and she acted differently, not playing with and singing to her young Kristopher and being happy. Then the seminal moment occurred for her.

“He picked up on it,” she says, “and it made him cry.”

She had changed, Haines realized, and Kristopher had not. “Thank God I snapped out of it,” she says. “’This is the same baby, never love him any less.’”

Haines and five other mothers will share their stories of raising children with CP in “Fierce Love,” a Well Arts Institute production set to stage at 7:30 p.m. Tuesday, March 17, and four other days — 2 p.m. March 21, 7:30 p.m. March 25, 2 p.m. March 28 and 2 p.m. April 4 — at Milagro Theatre, 525 S.E. Stark St. ($10, $5 students/seniors,

It’s directed by Erica Terpening-Romeo and Heath Hyun Houghton.

The other mothers are Ann Connor Griffin, Susan Cushman, Danae Davison, Jennifer Peterson and Nicole Silverman. Each has written monologues that will be recited and played out by actors. Well Arts often works with such marginalized groups to allow their voices to be heard, and mothers with children with cerebral palsy certainly have stories flowing out of them.

“It’s a journey I didn’t plan on, but I’m loving it,” says Haines, whose son is now 31 years old and author of a theater critic blog. “We faced it and went through it.”

Cushman, family support director for United Cerebral Palsy of Oregon and Southwest Washington, a partner with Well Arts, shares a similar story about her relationship with daughter Marie Blanchard, now 23.

For “Fierce Love,” she wrote about the grief ritual when her daughter was 2 years old.

“I realized I wasn’t seeing my daughter anymore, that I kept looking at her through a lens,” she says. “I went through this ritual to look at her as she was, and support her in her development as she should develop and live in this world. Doing that ritual was very powerful.”

Another compelling short story: Cushman held her daughter’s hand all the time for 22 years and, just recently, Marie told her, “I got this,” and walked without holding her mother’s hand.

“It’s wistful,” Cushman says. “I like holding her hand.”

Cushman went to a Well Arts production last year, featuring stories from Northwest Down Syndrome Association parents, and “it was stunning to see the commonalities (to CP parents).” Last November, the six women started their writing group with Well Arts advisers, and the culmination of 10 weeks of writing and rehearsals will be in “Fierce Love.”

Says Cushman: “Every time I watch rehearsal I cry.”

The mothers have children with varying degrees of cerebral palsy; the CP angle was important because, Cushman says, the Portland area saw seven deaths stemming from CP in a recent year and a couple more last year.

Cushman says it’s therapeutic for mothers to put their thoughts on paper as well as educational to relate stories about raising children with cerebral palsy.

The most important message to pass on is the fact that people with CP are not intellectually disabled and they need to be treated respectfully, Cushman says. Other people’s perceptions, anxieties, ignorance and unwillingness to communicate appropriately need to be addressed.

“If society was built differently, there wouldn’t be barriers,” she says.

Haines acknowledges that “the really hard fight is behind me now” while raising a child with CP. “It was so long ago, things were so different,” she says. When Cushman called her, “I thought I didn’t have much to offer,” she adds. “It turned out that I had a lot to offer.”

She adds: “Even though things are different, it’s still the same thing, the same feelings, the same fears, all of that. Meeting these moms was the greatest thing. We clicked immediately. The process was phenomenal. It became sort of therapeutic. ... I had never written a word in my life, but I always wanted to, because the experience was so positive with my son. It’s not always a horrible nightmare to find out your son has a disability.”

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