Memoir of a Decade-Long Journey

By Terese ‘Teri’ Urban, Virginia H&V

I write this memoir in tribute to my daughter. Never could I have imagined the journey I was to embark on a decade ago.

Our first child was born on a beautiful, sunny spring day. My husband, Mike and I had decided on a name a few months into my pregnancy: Veda, a female derivative of David. The name means knowledge or wisdom and was a perfect name for our perfect child.

Veda’s birth story was typical and uneventful. However, within the first few hours of her life, we were told she did not pass her newborn hearing screen. The nurses performed an otoacoustic emissions (OAE) test on her three times before we left the hospital 24 hours later. I left with a pink slip instructing me to call a pediatric audiologist for an appointment within two weeks. So, I did.

This appointment was Veda’s first outing at two weeks of age. We had a lot of questions and were hoping for answers. This is a blurry memory of mine as I navigated the world for the first time as a mother. However, I do remember walking up to the building, feeling that this would not be the last time that Veda and I visited this place.

By now, my in-laws were visiting, ecstatic to meet their first grandchild. I had no idea what to expect at that first ABR appointment and looking back, I am not even sure I prepared myself for what to expect. Deep down was fear of what I may be told, so I decided to wait for test results to deal with those feelings. I was told Veda had a mild-to-moderate hearing loss and needed hearing aids. I walked out of the office holding back tears, my mother-in-law by my side, offering to take me out for ice cream. I got home, immediately locked myself in the bedroom with Veda, called my husband at work and explained to him that he needed to come home and that I did not want to get ice cream with his parents.  Our baby could not hear.

Then, something happened, and my life paused as the doorbell rang. A few of my childhood friends sent me flowers. I cannot tell you what the card said, however, what I remember was “Sorry Your Baby Can’t Hear”. I became upset and at that moment, the flowers resembled mourning for something that was lost. I decided right then, when Veda was one month old, that I need to embrace this part of Veda, and accept and figure it out quickly. So, I did.

I would be lying if I said I figured it out quickly and looking back, we had many roadblocks. Our first pediatrician told us early intervention was for poor people and a geneticist insisted that Veda’s genetic condition, Connexin 26, was not progressive. I recall many moments; the sorrowful look an elderly couple waiting in the audiology office gave me when I told them Veda couldn’t hear, a photographer for Veda’s first birthday photo shoot who persistently tried to cover up her hearing aids by fluffing her hair over her ears, Veda’s preschool teacher telling me that the hearing aids had been squealing all day as she shrugged her shoulders and walked away. Something shifted that day. The advocate, who had been brewing for three years, bubbled to life. Something had to change. And it did.

The day it happened is a day my husband and I will never forget. It was such a pivotal time in our journey parenting a deaf child and looking back, we are fortunate it even happened. During an IEP meeting, her Hearing Impaired (HI) Consultant asked us if we ever used sign language with Veda.  She asked our permission to sign with Veda in class the next day, and sure enough, we received a phone call letting us know Veda would not take her eyes off the HI Consultant.  It was recommended we meet immediately and write an ASL interpreter into her IEP. So, we did.

That exchange in the IEP meeting shaped the path we walked forward. Unbiased sharing about communication choice and presenting options to us, the parents, and to Veda was paramount.  We saw the power of advocacy, of knowledge, that allowed for better communication and better understanding of the world around her. Perhaps most importantly for Veda, the door to Deaf culture opened up and she stepped right in as a four-year-old and never looked back.

In our decade long journey, we’ve had two hearing aids that no longer provide benefit and gave way to bilateral cochlear implants, attended three different elementary schools in three different states, had four educational interpreters, five audiologists, six Teachers of the Deaf/Hard of Hearing and seven Speech and Language Pathologists.

Today, Veda is a thriving and inquisitive child who identifies as a proud deaf girl.  Recently, I shared my muddled feelings with Veda about her first few months of life. When she discovered I cried over her diagnosis, she gave me the most puzzled look. Words did not need to be exchanged as she silently gave me a hug. What I would have given to see a glimpse of her comforting me in those early months.  My husband was right (there, I said it) when he said Veda would be fine. It would all be fine

A few months ago, I was conversing with a stranger at my children’s gymnastics class. She had so many questions about Veda’s technology and communication methodologies. I flashed back on how much I had grown from those early years when I was reluctant to talk about my baby’s inability to hear with strangers in a waiting room, now happily sharing how cool it is to have a deaf child with strangers. As class ended, the woman said, “Wow, what an interesting ten years you’ve had. You should write a story about it.” And so, I did.  ~

Authors note:  To this day, my childhood friends insist the flowers were sent to bring sunshine to my life.  I can only continue to thank them as they pushed me to accept reality and be the mother I am today.

H&V Communicator – Fall 2020