This past June 15th, in Los Angeles, a very important man in my life died at age 82. I silently mourned the passing of John Tracy. Although I had never met him, his life and the dedication of his mother, had a vast influence on me and a huge impact on my family.
John Tracy was the son of Spencer and Louise Tracy, Spencer being the actor of 40's Hollywood fame and fortune. Many of us think of Katherine Hepburn when we think of Tracy. But the truth is that from his very early days as an actor in Grand Rapids until the end of his life, he was married to Louise, a strong and dedicated woman whom he'd met on stage as a stock actor.
As their 10-month old son lay sleeping, Louise slammed the porch door by accident. John didn't wake, or even move. With the sixth sense that motherhood bestows, the nagging seeds of doubt that had plagued her sprouted and the doctors confirmed her suspicions. Young John Tracy was, in fact, deaf.
Her journey to learn all that she could about deafness and the rearing and education of deaf children ultimately led she and her husband to found "The John Tracy Clinic," a world renown center for families of children with hearing loss.
This is where I came in contact, if only by reputation, with John Tracy. Living in London with two older children and five-month-old twins, I was settling in to ex-pat life in 2000. Exhausted and sleep deprived, with thighs of steel from running up and down three flights of stairs in our skinny London townhouse, I experienced those same nagging moments of all parents of children with a disability.
Was my baby girl processing everything that was going on around her? Was there something wrong? Was she slower than her siblings had been? Sometimes she turned to us; sometimes she seemed spacey, not as plugged in as her twin.
A failed routine hearing test at nine months took us on a journey of discovery that our daughter, the one with the ready smile, the biggest snuggle, the sweetest disposition, was in fact, hearing impaired. "Deaf" was the word they used in the London hospital. And that was a very frightening word.
I'd never thought too much about deafness. Oh, I'd read the Helen Keller Story and knew that pivotal moment when her tutor had held her hand under the pump, signing the word for "water" as it washed over her hands.
But for any parent that has come face to face with their children's newly diagnosed disability -- whatever it may be -- it is as if a polar ice cap has settled across your heart. Like a human shield you wish you could take all the hardship, and difficulty, the teasing, the questions, the unkind actions and little cruelties of everyday life from your children. You wish you could deflect them like a superpower. But life doesn't work that way.
So instead, legions of mothers do what Louise Spencer did, they set out on a quest to learn and know everything they possibly can, to become the experts and tireless advocates in order to give their kids the best possible outcome. Some people, like John Tracy's mother, turn their own grief and confusion into something positive and productive.
Louise Tracy was amazed at how little information was out there for families. She traveled extensively to learn all there was to know about techniques that would help her son develop speech and language skills that would allow him to be a part of the "mainstream" hearing and speaking world. She was determined that her son would have a full and happy life, no matter how severe his disability. She and Spencer sang to him, read to him, talked to him, and with time and patience, guided John into an understanding of language and an ability to lip-read. Ultimately, John learned to speak as well. In those days, deaf children and families were often members of deaf communities, attended deaf schools and used sign language as their primary means of communication. Their deafness set them apart from the rest of the world.
I have never forgotten the quote Helen Keller gave when asked if she would rather be deaf or blind. "Blindness separates you from things," she had answered, "Deafness separates you from people." As a mother, the latter pronouncement was much more chilling to me.
In 1942, Louise Tracy took what she learned and generously decided to share it with the rest of the world. By then, her husband had become a bonified movie star with a contract at Fox Film Corp. She became a crusader, founding the only organization in the world to provide free services for the parents of infants and preschool children born with hearing loss. You read it right, those services were, and still are, completely free of charge to the parents of deaf children.
I cried a river of tears when I learned the news about our daughter. I grieved, and mourned the loss of Nora's hearing on her behalf. I blamed myself and railed that my daughter's future might be circumscribed by some genetic combination of her parents' chromosomes.
And then I dried my eyes and got to work. As a mother and a communicator, I instantly reached out over the miles of friends and colleagues to share the news about Nora's hearing impairment. Instantly, our friends and family reached back. Someone had a friend who knew a friend who told me about the John Tracy Clinic and I was determined to leave no stone unturned. I made a phone call.
The patient, wonderful woman who spent a transatlantic hour with me sobbing on the phone answered all of my questions, gave me hope and set me on a path to discover all I could humanly do to help my daughter learn to speak, listen and absorb language.
For one year, a thick packet arrived each month with information, exercises, language tips, and games to play with my then one year old. Physically removed from my support system back home, the folks at John Tracy Clinic became the lifeline that I needed to feel as if I were putting one foot in front of the other during a mountaintop squall.
In addition to the therapy and the hearing aids and all of the other things I had thrown myself into on Nora's behalf, what Louise Spencer had started for her own child, had positive repercussions for my own family more than sixty years later.
Any of us who determine that something is "amiss" with our most precious commodities, our children, understand what it means to take this journey of discovery, acceptance and advocacy. Cerebral Palsy, blindness, autism, childhood cancer, these are but a few of life's cruel and whimsical fates. This is my evidence that God is not in the details. I'm not saying he doesn't exist, you zealots and atheists out there. I'm saying quite the opposite. But I think that he doesn't exist as one giant fickle finger of fate, choosing who is afflicted and who is not. If he did, he wouldn't be so arbitrary when assigning imperfections. He would have struck down Idi Amin with a fatal heart attack or given Charles Manson testicular cancer. Perhaps Hitler would have simply self-combusted before he could ever conceive of Auschwitz. No children would ever die from illness, accident or starvation.
Today and for years to come, I will watch my hearing impaired daughter, whom they once called deaf, take the stage that will be her adult life. Yes, there are lots of questions from other kids about "; those funny things in her ears." As her Mom I certainly won't be able to start every school year reading a book about hearing aids to the class to help educate them about Nora's hearing impairment. She is learning her own sense of self-assurance about her capabilities. Most importantly, she has learned to speak up and say when she doesn't hear something, a triumph for a hearing impaired child trying desperately to fit in. I am so proud of her for her confidence, her self- assuredness.
I think back to a lesson plan from The John Tracy Clinic that helped me to teach Nora to speak up when she didn't hear something, to admit when she didn't catch all of the words. This sense of empowering her to be unashamed of her limitations, especially among her peers, was one of the most valuable lessons I learned that year.
"Mommy, will I have to wear my hearing aids always?" she asked me the other night. "You will sweetie," I said, "this is something you were born with. And you are doing beautifully, I am so proud of you."
Nora, I am quite convinced, will be a girl who is defined in the end, not by her disability, but by her different ability. When she recently chose the ear molds for her hearing aids, she refused the flesh colored option that would blend in with her ears, choosing instead the pink and yellow tie-dyed version. Rather than hide her impairment, my daughter had decided to boldly incorporate it into who she was. I'd bet that John Tracy would have approved, if he were alive today.
On my refrigerator in London I had posted a quote from Louise Tracy that helped ease me through particularly dark moments during those early months of discovery, when my husband was so often on the road reporting in the wake of September 11th. ''What you can do for your child will help all deaf children, and what you do for all deaf children and their parents will help you and your child. What you get out of life you must give back."
I would have liked to speak to Louise Tracy. I'll wager that any parent of a child with a disability would have liked to meet her. She represents more than her share of turning lemons into lemonade. I'd like to think there is a little bit of Louise Tracy in all of us.
For more information about the John Tracy Clinic or to make a donation, go to www.jtc.org
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