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June 9, 2011
Originally published on Gateways' website, May 2011.
This year the Murphy family is looking forward to celebrating the Seder in their Milford home. Which will be a huge improvement over last year.
Last year Frank and Elisa, their younger daughter Hannah, a family friend and an on-duty Jewish nurse had Seder on aluminum trays at the nurses' station at Children's Hospital. A few feet away, 11-year-old Rachel was attached to multiple machines all working hard to stabilize her seizures and keep her vitals strong.
Seizures are just one result of a stroke Rachel suffered at 18 months. Brain, muscle and nerve damage also confine Rachel, now 12, to a wheelchair and restrict her speech, movements and eyesight.
But despite her challenges, this is shaping up to be the year when Rachel gets to participate in her family Seder in brand new ways. Thanks to Gateways and Rachel's DynaVox ? a computerized device providing dynamic voice output for people with speech and communication impairments.
Now in her fifth year in Gateways' Sunday morning Jewish Education Program, Rachel is able to follow along in class with her trusty DynaVox. There the user-friendly visuals her dad downloads from Gateways' online Resource Bank circumnavigate the visual and speech challenges that used to prevent her from participating in class. The device literally gives her a voice. "She's able to connect with what she sees on the screen and what it means," says her dad. "And that opens up infinite possibilities."
What's more, over and above the technology that's allowing her to learn in new ways, just being in class on Sunday mornings presents Rachel with a new world to inhabit, says Frank. "It takes time to figure her out and see the real Rachel inside," he adds. "Gateways teachers and teen volunteers are gifted and caring and being with her buddies gives Rachel a sense of community." The family will also long remember the video Rachel's Gateways classmates made for her when she was in the hospital.
"Gateways provides that key part of her Jewishness she would never otherwise have," he adds. "Now when you show her the picture of the Sh'ma, Rachel covers her eyes. It means something to her. And that's huge."
Something else that means a lot to Rachel is music, specifically Jewish music.
Indeed, recognizing and responding to music "may be the most profound way she interacts with her world," says her dad. Every Sunday morning she wakes up singing the Gateways welcome song, The Week is Here. "And now we sing Gateways songs at our holiday events. They're very much part of our family."
Compared to last year when she wasn't able to sing or even know it was Passover, Rachel and her family are hoping for a joyous celebration. "Last year we were like the refugees in the Passover story," says Murphy. "Now we pray everyone is healthy so we are free to celebrate together in our own home."
The Murphys are ready: They've got a CD of Uncle Eli's Passover songs, a box o' plagues they filled with plastic cows sporting "boils" and some cheap sunglasses signifying darkness ? along with the digitalized version of Gateways' hagaddah Rachel's dad has downloaded onto her DynaVox. (Click here for Gateways' Seven Strategies for a Successful Seder for ALL Learners.)
"If we weren't part of Gateways, Rachel would have a DynaVox but there would be nothing Jewish on it," says Frank. "Now she has prayers, stories, and a hagaddah that she can understand -- pieces of the puzzle that make up the whole of her Jewish experience. It's as if Gateways, connecting us to other families and tapping us into the reservoir of Gateways talent, is the hub with our families and temples the spokes."
Just a few months ago, the Murphys set the date for Rachel's bat mitzvah: May 5, 2013. "Sometimes I have to laugh at what a multi-cultural undertaking Rachel's Jewish education is," muses her dad. "The gentile software engineer father at the kitchen table struggling with the Indian software on Chinese hardware, all working together to make this bat mitzvah happen."
But none of it would be possible without Gateways, Frank insists. "There would be no alef-bet, no holiday symbols, no prayers, no path to a meaningful bat mitzvah. There would just be a gaping hole in our daughter's identity."
"For a child with disabilities there's a lot of brokenness and, by making Judaism accessible, Gateways brings about a wholeness for her and for us."