A Family’s Quest to Hear and Be Heard

 

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“Severe deafness.”  “Profound hearing loss.”  These were the words heard by Jennifer and Bill Rosner within hours of each of their daughters’ births.  Imagine knowing that your children could possibly live in a world without music, voice, laughter and words, when yours was filled with violins, singing, humor and talking?  Unthinkable. 

I learned of this family’s odyssey through an Evite a few months ago:  an electronic invitation to a reading and book signing of If a Tree Falls, hosted by Jennifer’s sister in a Washington, DC suburb.  Since I travel there frequently, she included me in the guest list. Unfortunately, I was not able to attend, but I quickly ordered the book.  The holiday weekend gave me the time to devour it.

As a mental health professional working with parents of children with disabilities for over 40 years, I have listened to and read countless stories. Few have touched me as profoundly as Rosner’s. She takes us on a roller coaster ride into the land of the hard-of-hearing, a fractured battleground where those committed to signing are pitted against those sold on inclusion in the verbal world.

My first thoughts compared the Rosners’ experience to those of parents whose children are diagnosed with autism. Unlike autism, hearing impairment is now routinely diagnosed immediately. Infants are whisked off for hearing tests, and the die is cast.  Confirmation comes two weeks later, with a clearer picture of the seriousness of the problem. With autism, many months of worry, fear, denial and angst usually precede confirmation. Which would you prefer:  knowing immediately that your child faces challenges, or having a year to bond before the diagnosis?   Tough question!

There the contrast ends with a fork in the road.  In autism, those espousing behavioral plans debate those who evangelically preach diet and nutrition. Faced with severe and profound hearing loss, the Rosners immersed themselves into the worlds of signing versus speaking aloud. How to choose?  

After much debate, Jennifer and Bill decided that they were “talkers.” “We were constantly debating, questioning, arguing, doubting, agreeing, wondering aloud. And we were hearers, in the hearing world. A soundless, wordless world was unimaginable.”  They made the difficult decision to bring their daughters into their world.  

Baby Sophia was fitted for hearing aids, and baby Juliet received a cochlear implant on her first birthday.  Then they waited.  Would each girl hear and eventually talk? 

Living this emotional soap opera was insufficient for Rosner. Armed with information from geneticists, family trees, immigration records, and her fertile imagination, she takes the reader back over 150 years to the origin of her children’s deafness.   A chromosomal abnormality, asterisks marking those who could not hear, and a missing name all combined for her to conceive how sisters, brothers and parents were torn apart.  We travel in our minds’ eye to an Eastern European shtetl, where not only being Jewish, but the double whammy of being deaf, isolated ancesters.

All families hide secrets, but this one was in plain view: a mother with hearing aids and a poor ability to listen, was an experience I could identify with only too well. How many readers struggle with the burden of not being heard, and are shushed as I was, because talking about the elephant in the middle of the room was not “nice.”

Thank you Jennifer for opening Pandora’s Box for YOUR girls, and hopefully for others who want to know what was previously “unknown.” Simple, yet profound, this memoir shows how one family answered the question, “After the diagnosis, then what?” I hope that this book will be read widely in the disability community, as it offers hope, love and tenacity when the future looks bleak.

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