We are 2, that’s right, TWO, days away from Rochester’s 2017 Listen To Your Mother Event on Saturday, May 13th , 7:30pm at Lyric Theater. So, as we wrap up our walk down memory lane from performances past, we thought it fitting to share two (see what we did there?) more stories with you from 2016’s cast; the first byway of video and the second through written word. These pieces embody the authenticity, hilarity, sadness and joy that is motherhood and LTYM. We are so hoping that you’ll join us in this year’s journey; for more information and last minute ticket sales, please visit http://listentoyourmothershow.com/rochester/
First we (re)introduce Linda Lowen. Linda is a radio producer, writing instructor, theater reviewer and freelance writer/editor. She co-hosts “Take Care,” a weekly health/wellness radio program produced by WRVO Public Media and distributed nationally through PRX, the Public Radio Exchange. She dreams of writing a young adult novel situated in a magical small town and/or and a memoir about her Japanese-Jewish upbringing. More on Linda and her mother (including a photo) is at www.lindalowen.com (click on About/Kinda Personal). Click the link below to experience Linda’s performance.
Lastly, we (re)introduce Sally Bittner Bonn. Sally is a writer and arts administrator, with a background in theatre. She works as the Director of Youth Education at Writers & Books and has been leading creative writing workshops for adults and children for over a dozen years. Her favorite job, though, is as mother to her son Oscar. Sally’s prose and poetry have been published in various journals and anthologies as well as on Rochester’s Poet’s Walk on University Avenue. She was in the 2016 cast of Listen to Your Mother, Rochester and is thrilled to now be on the 2017 production team. She is slowly but surely working on a book-length memoir about the challenges and joys of raising her son—who happens to drive a power wheelchair. Sally has spoken to college classes, health care professionals, educators, and parent groups about raising a child with special needs, advocacy for the disabled, and how creative writing fits into all of it. She lives in Brighton with her husband, David and their son, Oscar. She blogs from time to time at www.oscar-go.org. We hope her story inspires you as it did us…
I have never wished my son could walk. I always assumed he would, until I learned he wouldn’t. All kids learn to walk, right? But our baby wasn’t meeting his gross motor milestones, and so at 14 months, after several appointments and evaluations, he was diagnosed with spinal muscular atrophy, or SMA, type II, and we were told he would never walk. So, what use is there in wishing for something you know will never happen?
We take it for granted, this walking thing. But I’m okay with it, the fact that my son doesn’t walk. And from him I’ve learned that walking is not the most important thing I do, either.
I’m not saying getting the news wasn’t devastating. Because it was. After waiting almost two weeks for results of the genetic blood test, the three of us—my husband, our 14-month old, and I—were called into the neurologist’s office. She examined Oscar briefly, then said, “So, a diagnosis of spinal muscular atrophy means…” and I didn’t hear anything she said after that because even though she had called us in on New Year’s Eve, I still hadn’t seen this coming. After the appointment we sobbed right out loud through the hollow caverns of the parking garage, with our boy in our arms.
We cried for days, for weeks, really. We held our boy, our happy smiling boy, our boy who was still exactly the same boy he had always been, even before we had ever heard of SMA. We told family and friends what we knew—that Oscar had this thing called SMA that is kind of like muscular dystrophy but not exactly. We told them we were sad, very sad. But we also told them we somehow knew we’d learn more about being human from him than we ever could have imagined.
We picked ourselves up from the cold tile floor and began to put our lives back together, in this new shape. Oscar started physical therapy, in our home, delivered entirely through play. With the guidance of this amazing physical therapist we brought equipment into our house—a stander, supportive seating systems, and various things on wheels including, eventually, a tiny wheelchair for Oscar who was by then 19 months old. Hands on the wheels, he could hardly propel himself more than a few feet at a time across a smooth floor, but still it was a tiny taste of independence.
Six months after diagnosis we went to the national SMA conference, like deer in the headlights. We saw gaggles of teenage girls talking a mile a minute, making friendship bracelets and steering clear of their parents—and, they were all in power wheelchairs. We met doctors and learned things about genetics, clinical care, and equipment. We went to a research session that talked all about the incredible advancements happening in the world of SMA. Possible clinical trials. And at that session we watched other parents ask when the cure was coming. And in that moment we realized a cure was not our goal, had never been our goal from day one, and that it never would be, not for our boy. For the greater good, sure. Of course. But not for our Oscar. Somehow in this process we realized that our goal for our child was still as it had always been. To nurture him, to love him for exactly who he is, in every moment of every day. Not to fix him. Not to reach toward making him different from what he is, has always been.
And so it has always been. We bought a ranch house in the suburbs, and a mini-van—two things I’d never have imagined for myself. But these two things give my son what he needs: access.
And then there is Oscar’s power wheelchair. The first time he sat in it, and put his hand on the joystick, he took off. At age three, beaming ear-to-ear, he zoomed away. Away into the neighbor’s yard. Away from his parents. He zoomed across the grass, independently, not being pushed by someone else. And then when he was ready, he came back.
One might imagine the occasion of a child getting a first wheelchair to be sad or heavy or difficult for a parent. But for me, that was unequivocally one of the happiest days of my life.
And so we soldier on. Yes we face challenges that other parents don’t. And that is complicated. But the love I have for my son is not complicated.
He is seven now and our goal is the same it has always been. To raise a happy, well-adjusted child who is proud of who he is.