A Friday ritual. A photo – no words – capturing a moment from the week. A simple, special, extraordinary moment. A moment we want to pause, savor and remember. If you’re inspired to do the same, leave a link to your ‘moment’ in the comments for all to find and see.
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.
Only 10 more days before 13 local literary connoisseurs come together to bravely share with us their stories. Rochester’s third annual Listen to Your Mother event is right around the corner on Saturday, May 13th at 7:30pm at the Lyric Theater. Tickets to the event can be purchased by visiting http://listentoyourmothershow.com/rochester/ .
Did we mention attending LTYM with your loved ones makes fabulous and touching Mother’s Day gift?!
This week we dig back into our archive and (re-)introduce you to a LTYM 2016 cast member, Sara Treadwell.
Sara left a career in social work in order to start The Light Room Wellness Center where she assists clients with the restoration of harmony and balance through a form of energy healing called BioGenesis. She enjoys reflecting on the many ways our children help us to find our inner Buddha through her blog RaisingZen.wordpress.com. Read Sara’s beautiful written word from LTYM 2016 below.
“Am I My Child’s Mother?”
I was sixteen when I had my first child.
It was not what I expected or planned but it was the way my life was supposed to go.
It was no accident.
My first decision as a mother was not what name to give my baby, but what mother.
My first task in motherhood was determining WHO would be my childs mom. I wasn’t sure that the answer to this was me.
I am not talking about deciding if I wanted to be her mother, but if I was supposed to be her mom.
I knew the moment I found out I was pregnant that I would make any sacrifice necessary to be her mother. But was I supposed to be?
This is not a question most moms ever have to ask themselves, but for the ones who do, there is a special kind of awareness that forms, a unique bond with their child. A special shift which opens our eyes to the reality of motherhood beyond ourselves.
Imagining the child you carry with a different mother takes a special kind of courage and strength. Envisioning your baby reaching success without your guidance and input is humbling and heartbreaking.
I knew that I was being asked by the powers that be, to bring this child into the world. But who her mother would be was a separate question.
Maybe it was me. Perhaps I was going to get to see her grow.. But only if that was best for her.
Maybe, there was another woman, another ready mommatobe waiting to mother my child. Perhaps she was dreaming of holding my baby, her baby in her arms and singing her to sleep at night.
Starting out motherhood by having to question if you are even supposed to be the mother to your child is difficult. It is frightening, and sad, and liberating in a way.
I felt the physical ties with this new little life, I wanted to be there to help assist her to adulthood, but I also understood that just because I brought her into this world does not mean, unequivocally, that I was going to be the one to raise her.
I never once doubted that this child was given to me so that I could allow her safe passage into this world. And, as her mother, all I wanted, from the very first moments, was for her to have the life she was supposed to have.
If that meant giving her to another family, although I knew it would break my heart, I would do it. If that was what was best for her then yes. I would give my child to another mother.I would let her go. Because she was not mine. She was never mine.
That is the thing we often miss. Our children are not “ours”. We, as mothers, are given the honor of witnessing the miracle that is new life. We assist children into the world and then we are offered the privilege of witnessing their journey.
What I have learned over the past sixteen years since my first pregnancy, what I somehow instinctively knew back at the very beginning, is that as mothers, we are offered front row seats to witness the transformation of a tiny seed into a mighty oak.
We are given the privilege as mothers to assist these leaders of tomorrow on their own journey. And if we are honest, if we are really honest, being a mother has very little to do with us. Being a mother is about learning how to surrender, how to let go.
It is the earthly opportunity to experience the divine. To love a creation so much that it hurts, so much that even before you have met them you would be willing to sacrifice your own desires for what is best for them. Being a mother is about allowing autonomy.
I remember the moment.
The moment when I knew she was on her way for me.
That I was the only mother she was intended to have. I was getting into the car to go to an appointment and all of a sudden I began feeling this swirling energy around me. And I saw images of my child growing up, happy. They were images of her with me and my family. Learning about our family history, hearing our inside jokes. I could feel it.
She was coming to be raised by me. And I cried with relief and happiness.
No one that ever saw us together could deny our purpose in each others lives. We were destined for each other. We were just what the other needed. And it has been an honor. Witnessing her life. Simply an honor.
Motherhood is difficult when we become caught up in the outcomes of our children’s lives instead of the journey.
Motherhood is about surrendering. We are teachers guiding these young souls on their paths, we are students learning about the world and ourselves through them,
But as we teach and learn, we must surrender, and the best way to do this is to simply offer unconditional love to others …and to ourselves.
In recent years when my second and third pregnancies arrived I didn’t question who their mother was. But I also didn’t forget that they were arriving to fill their own destiny independent from me and it remains my honor to witness their paths.