A Mother's Story

A Mother’s Story…Learning, Accepting, Embracing

This work is reprinted with permission from the American Society for Deaf Children, Endeavor Fall 2017.  

by Sharon Lynn Clark, mother of SJC

A few weeks ago, I was sitting at one of the tables at the YMCA here in Frederick sharing a hummus and pretzel container with my daughter who turned 6 on March 22. She was having a ‘six-year-old moment’ where she had only feisty, contrary comments to make. For example, as I was looking for a spoon in my purse to eat the rest of our hummus, I realized that I didn’t have one, and she said, “I knew you didn’t have one.” A few minutes later I saw that a few tables away from us was a woman tutoring a small child. I told my daughter, SJC, the woman was teaching the child and that Mommy does that, too. My child responded with, “She’s better.” I decided to engage and asked her, “How do you know that she’s better - maybe I am.” SJC said, “No.” Conversation over. A few minutes later she walked over to a nearby television showing the upcoming weather forecast and she accurately read and then told me, “On Thursday it will rain.”

     Do these snippets from our conversation remind you of a sixish-year-old who is living in your house, who you saw at the playground or at Target, or even on television? The answer, of course, is probably yes.  Now let us play a little game.  Go back over the dialogue between my daughter and me and every time I wrote the words, “SAID, TOLD or RESPONDED” imagine that the word is “SIGNED”, and that will be our reality. My blond haired, brown eyed daughter debates, discusses and asserts her opinions, (like the lawyer I jokingly say she is), and reads above her grade level, writes letters to her family and friends, decodes compound words as a fun after-dinner activity, just because she wants to (her idea).  She plays tee ball, runs, takes hikes and does everything that the ‘typical’ child does and she is also Deaf and communicates using American Sign Language.

A little bit of history: That first year…

    My daughter – SJC- was born on March 22, 2011 and is my perfect, typically developing beautiful, happy, healthy, precocious, willful, independent daughter.  Before becoming a mother, I remember hearing people talk about how the love for their child surpasses that of any other relationship. I remember that from the moment I first heard her heartbeat, I was consumed with an immeasurable love that cannot fully be explained. Many of you can probably relate to our bond that is unlike that of any other I have experienced in my life. Everything about her makes me a stronger and more content human being and I would not now, nor would I have ever, changed anything about her.

            SJC’s father and I found out that she was Deaf on the first day of her life when an intern informed us that our daughter failed her newborn hearing screening test. Failed was the word she used. “It could be the fluids that are still in her ears,” we were told, but about three weeks later a test called an Auditory Brainstem Response (ABR) test confirmed that indeed she has a ‘Severe to Profound’ hearing loss. I will never forget the day when the audiologist at GBMC hospital in Towson, Maryland told us that SJC might not ever hear or speak like other people.

    I was 35-years-old when my daughter was born and I will admit that I was in shock when I first heard this news. In fact, the word ‘shock’ doesn’t really capture the emotion whereas the sign for shock in American Sign Language more accurately does. Take your index finger from one hand and touch it to your temple. Then take both hands and quickly open them with your palms down as if you are dropping something suddenly in front of you because you are startled by a piece of news.   

In that moment, as a brand-new mother, I felt as if her words were an alarm startling me awake and jostling me into our new reality, one that SJC’s father and I never could not have expected or planned for in any way.

     We would later learn that SJC was born with a sensio-neural hearing loss in her inner ear because her cochleas had not fully formed. She also did not have a functional auditory nerve. There was no genetic cause found, nor one in general.  It just happened.

   That first audiologist also gave us information about cochlear implants, an assisted listening device, implanted into the cochlea (which looks like a snail in our inner ear); which is more advanced than a hearing aid, and informed us about the potential risks and benefits of the implantation. Almost once a week for the next year, we brought our child to the Listening Center at Johns Hopkins University and seriously thought about the possibility of the implants. We struggled with the decision for many months. On the one hand our baby daughter was perfect, but on the other hand, we asked about whether she ‘should’ hear, ‘needed’ to hear, and would be better off with hearing in a society where the majority hears and speaks.

    However, during these first few months of her life, we also began to cling to the abundance of resources that we had at our disposal. In large part, those resources came from the second family we have created at Maryland School for the Deaf, in Columbia Maryland and now here in Frederick. At just a few months old, Sarah began to attend an infant class and her father and I attended an American Sign Language class every Monday morning and a parent group every Friday. I began to immerse myself in the language and I felt supported by the teachers and other parents at the school.

     I communicated with Deaf people even when I knew approximately four signs. I did not care and I did not feel embarrassed for my lack of knowledge. Our teachers wanted to educate us and they could see how passionate we were about learning to communicate with SJC. I wanted to learn everything I could because that is what she needed and deserved. Learning, accepting, and embracing our new reality is what I needed as well.  

     After approximately one year at the Listening Center, during which we underwent different assessments, hearing aid tests, MRIs and CT scans, it was finally time for us to meet with the surgeon who might perform the operation. Dr. Charles Limb informed us that the tests confirmed that both of Sarah’s cochleas had not fully formed and that is why she did not hear. Because of this, he could implant only eight or nine of the electrodes compared to the ‘normal’ surgery of 30 electrodes. Furthermore, he was not certain that the surgery could fully or definitely change her hearing level, though he recommended moving forward with it for whatever benefit it could provide.

    When Sarah was first born the idea of the cochlear implant felt like the proverbial light at the end of the tunnel, primarily because I did not know anything about American Sign Language or deafness. I do not remember meeting a Deaf person before my own child was born. We were scared and felt ill-equipped to handle our situation, but we were learning.  In the few short months of being exposed to the Deaf community, we had changed.  Hearing the words “could be,” “might be,” “not sure what the effectiveness will be,” describing the proposed cochlear implant surgery felt like potential blood on my face.  There was no way that we could imagine placing our baby on an operating table in anyone’s hands, even if those hands belonged to the most capable surgeon in the country.

     As the doctor shared this information and the side effects with us, I realized that I was in a very different place – emotionally- from a year earlier.  I was now immersed in ASL and our child was thriving. Our extended families were learning. We attended conferences, developed relationships with people in the Deaf community and we were confident that given the support that Sarah needs and deserves she would continue to thrive in every way.

Back to Present Day

    Earlier I wrote about all the things that I did not know. For many things that was true- I didn’t know about deafness and signing. And, as a brand-new mother, I had a great deal of fear. It felt like there was much uncertainty in my life. When SJC was first born, I did not know how to communicate with her.  That was hard.

     And then…I began showing up to everything… to my ASL class, parent class, home visits with teachers, and other events in the Deaf community- showing up to be courageous.  And I started to learn to sign.

     I remember the moment that SJC signed for the first time. We were sitting at the top of the stairs next to my bedroom and suddenly I felt as if my heart would stop. Why?..,as –six-years-olds ask all day long… “because it was working”. My daughter was fine. Of course, she was fine. She was far beyond fine. She was and is precisely who she is supposed to be. All along, the only thing I needed to do… was have acceptance of that truth. When I surrender to what is meant to be, then that is when greatness can occur. Everyday I am called upon to be courageous, to learn something new. Aren’t you?

    I am beyond grateful for the opportunity to write this article. I have wanted to share our story since SJC was born. My hope is to widen the dialogue between the Deaf and hearing communities because, in my experience, each community can be immeasurably enhanced.  In the last six years, I have learned that people are hungry to learn to know more about the Deaf community - from the nine-year-old boy who attached himself to SJC on a three-day retreat and began to learn sign language, to the parents and children at the theater arts classes where my sister teaches in New York City, to all the people that we connect with at museums and playgrounds and stores in all the various places where we go.

   Finally, for all of you who are confronted with situations which you never could have anticipated or planned for, I want to say my daughter inspires me every day to be - and become more than I believed was possible. We are all interconnected.   Though I used the word ‘typical’ earlier in this column, there really is no such thing as ‘typical’ or ‘normal.’ There is no one way that any person is supposed to be.