A Day in the Life

Silence....

What does it mean to a hearing person? To me it is a time when my children's voices are quieted. A time when I find a moment of aloneness. Even then I can hear the background. I hear the mechanisms of life. The tick-tock of the clock. The hum of the ceiling fan, the kitten meow in the distance. I am aware of the life around me, even when it is silent.

What does silence mean to my son?  don't know, although I sit here pondering it. What does he hear? He is profoundly deaf. Supposedly he cannot hear anything. But what does the sound of true silence sound like? I have never heard it. What is it like not hearing your mother's voice? The sound of tinkling bells? Classical music? A baby's laughter? My son cannot hear the daily chatter of our lives. He won't hear his name called at graduation. He won't hear his future wife say I do. He won't hear his children call him dad.

The knowledge of this is almost too much to bear. There are days I hate the sound of music. Simply because I can hear it while he can't. I rail at God over the unfairness of this. He had residual hearing and even that was taken. He remembers what it was like to hear, he remembers whispers, echoes of sounds. To know what you are is missing is worse, I think, than to never know. Yes, I am grateful that he knows our names, he knows the sound of his name. I am so happy we had the foresight in naming him Benjamin. Such a strong consonant. If only I had a hunch, a hint that we would lost all his hearing, I would have worked harder, faster, teaching him the words for everything. We would have worked from sun up to sun down. Every day. Instead suddenly it was all gone. He thought the television was broken, he wanted it fixed. We took him to the doctor and he got angry when the doctor didn't fin his ears. He is mad at me because I won't buy him a cd player like his brothers and sisters.

My daily life is a series of questions. They mostly begin with why. Why did this happen? As I go about my day I am constantly saying to myself comparing things. I can hear this...but he can't. My children are talking about this ... and that...but he is missing out on the chatter. I hope that one day I will have the answers to my questions.

Some people say that deafness is not a disability. I still have not come to grips with that yet. Most days I cannot see the light at the end of the tunnel, I am stuck in the middle of the darkness and I feel it is a huge disability. Other days I only see the beauty.

He is beautiful. All of my children are, but why is he on my mind so much? Why do I immediately think, "how will this affect him?" Not my family as a whole, but him. Our lives revolve around him and his needs. I constantly call out to the children, "Where is Ben?" "Is he OK?" "Does he have what he needs?" And the other children like the troopers they are simply comply. They have empathy, they have compassion. They think about other people's feelings, and care if someone gets hurt. But am I hurting them in the long run?

Once when my son was a toddler we thought about respite care. A 'professional' said siblings of special needs children need to have time without them around. Time to be normal. I was offended at the thought. It was almost as if it wasn't fair for the disabled person, they don't get "time off for good behavior." Why should the family?

 

This was written April 11, 2004. Benjamin was 9.

Copyright Pamela Roy All Rights Reserved.