Keep Opening Until the End

By Sharon Lynn Clark

“Most of us feel brave and afraid at the exact same time.” — Brene Brown

We’re about to become exceedingly honest and vulnerable and admit things that might feel uncomfortable to share but don’t worry it’s going to be… I’m not sure what it’s going to be, but I think it’s going to be fascinating and I’ll go first. Ready, set, go:

When my daughter was born, and her father and I found out that we had a perfect, beautiful, healthy, and happy baby girl and she was also Deaf — I was scared. You know what- that word really doesn’t cover it. I was terrified. I was in love with her; the kind of love that cannot be explained nor compared and I was flat out terrified.

Why? Oh I don’t know…did it have something to do with what I thought or not even thought, just sort of maybe heard about but not from anyone in particular just in the background hum of society for the previous 35 years of my life about people who are Deaf? Did it have something to do with very subtle, hushed, low-key- as the teenagers are saying now-stereotypes about what it ‘MEANS’ to be Deaf.

This is going to be a space where we talk about that. I’m going to take us on a journey… I know… I apologize. That word and reality tv but read on: this is going to be a journey of disclosure, of respect, of saying things I/we “think but maybe do not say.” Thank you, Jerry Maguire, because otherwise we live separate, we build walls, we, well, build cases against each other because sometimes that could feel easier than just asking a question. A question is so vastly different than an assumption. I can assume things too.

Now about courage: I am here to be courageous. If you are here: so are YOU. I suppose it takes a good bit of vulnerability to actually admit that I had absolutely no idea what I was supposed to do, be or feel when my daughter was born on what was 9 years ago on March 22.

It takes courage to admit that where I am now is only a direct result of tiny itty bitty at times barely recognizable action steps since the day she was born. And there are still many moments when I don’t feel like I know what I’m doing but somehow the path always appears, frequently right in the middle of feeling like I cannot do the hard things. You’ve probably felt that before, right? To quote Tara Brach from an online guided meditation and talk that I attended last weekend, “Hard thoughts are real but not (necessarily) true.”

I will never forget the day that Sarah’s father, and I took her for her Auditory Brainstem Response Test or ABR. She was a 1-month-old, healthy and content baby. It would be proven that she was ‘Severe to Profound’ Deaf. As the auditory technician hooked things up to her to see what she could hear and not hear I was still in a state of shock and disbelief. Various thoughts and feelings were racing throughout my entire being:

‘What was going on here? What are we doing here? Who are these people? I do not understand this. Any of this. All the things these people are telling me bares zero similarity to anything I thought I knew. Reality has shifted and I am feeling like the ground keeps shifting beneath my feet. With all I read while pregnant I never read one word about any of the wires and machines and truly kind technician HERE. In 9+ months it was never suggested that I also read a book about Deafness. I saw not one commercial or TV show with adorable babies who were also Deaf.

Hmm. Interesting.

And then the test was finished. And she said things. I do not remember everything she said. But she gave us a diagnosis. Severe to profound. Deaf.

Today — and for several years now — that ‘DIAGNOSIS’ and the meaning that word conveys matters not one bit. Her ‘diagnosis’ showed us where to begin and that was necessary. She is profoundly confident, strong willed- multiplied by 10, analytical, opinionated, and sweet. This year she is profoundly 9 years old which means she is putting her father and I through our paces. She is exactly who she is supposed to be, and she is my greatest teacher.

But in that moment, in that dark, small room, I can recall that I kept digesting those words again and again and again. Because I don’t understand this and our egos — or my ego at least — likes to feel like it’s got a hold of things; like it knows things for sure.

I remember asking the audiologist, “Does this mean she’ll never speak?” And I cried. More than a little. In the arms of a stranger. And that is the truth. That was the truth for that moment.

She gave us information about Maryland School for the Deaf and cochlear implants that continued the feeling that I was walking on clouds in the sky, but not actually clouds because clouds would be something I could recognize.

For our family it was the right choice to allow Sarah to be solely who she is — which is a Deaf person. She is also Jewish along with 100 other things that define her — like all human beings.

Here’s what’s up: I Do NOT want our child to be a hearing person — I want her to be herself. I want her to have high self-esteem and be a ‘regular kid’ who giggles with her friends. Truth: I want to be like her: resilient and brave and confident.

I want to ask you to keep reading, to be open to new ideas, to chipping away at our old ideas that maybe do not serve us, to continuing to be brave, because I deeply desire to tell a new story about this topic; yes, new as in never been told before. This new story is going to be about how being Deaf is not a disability as that word has been defined in our dictionaries. The human, my daughter, of whom I speak, has no, “physical or mental condition that limits a person’s movements, senses, or activities. She also does not possess a, “disadvantage or handicap.”

And there is this: A note hanging on my refrigerator, written by my daughter, probably months ago. “Keep opening until (the) end.” She created a little fan book of sorts, and this was the first note of several. But tonight, as I write this, on my home on a Saturday evening in June, I cannot help but read these words with a different meaning than she intended. But that’s what always happens right? My child — our children — enable us to see the world, our lives, in ways that never could have occurred without them.

Written by SJC

I’m trying daughter: Every day, to open more and more. I must quote Rainer Maria Rilke’s powerful words:

I live my life in widening circles
that reach out across the world.
I may not complete this last one
but I give myself to it.

In light of what has been occurring in the world the past several months there is a part of me that feels like maybe I should hold off on writing this, like maybe this isn’t the ‘right time’ and that I should be more concerned with sanitizing and distancing myself from others. But I realize that this time — when all I have is time — is when I must continue to write these words.

As I write this, I remember a young lady who sat across me — at a table- in our local library when COVID just began in March. She shared that her classes at Penn State had just shut down. One of the stickers on her laptop of says, “Inhale Courage. Exhale Fear.” I told her that I really liked that, and I could relate. Most definitely. Can’t you?