I hear him in the morning, banging the walls with his hands and bouncing up and down on his crib’s spring mattress. He babbles and sometimes softly giggles. He will cry but it isn’t the same kind of cry you would hear from a two and a half year old. It’s a quiet cry, and as his mom and the one that wakes up to his sound every morning, I am accustomed to this cry from my child that can’t hear very well. I open his door and call out his name and he continues to play with his back facing me. He rocks his head and claps his hands and is startled when he catches a glimpse of me out of the corner of his eye. The surprise is known as I see his smile pull up towards his eyes and his dimples cave into his cheeks and feel his quiet, beautiful laughter flood the room. I had been standing there watching him for a while.
He was only a couple of months old when he left the hospital and what I had once thought was chaos became a natural routine for our family. Day after day of doctor appointments quickly filled up the calendar, and I wasn’t sure why we were seeing *this* person, or much less remember why we saw *that* person. Piecing it together even after two and a half years seems unpredictable to say in the least. The puzzle pieces continued rearranging themselves and when one door closed, another door opened for more appointments or other specialists for another diagnosis or concern. Even after surgeries, and even after getting lab results back confirming genetic testing for Silas’ syndrome, the hardest most confusing diagnosis to this date for myself is his loss of hearing in one ear, his permanent severe hearing loss in the other, and that he is affected by ANSD (auditory neuropathy spectrum disorder). It is something that I try very hard to navigate but continuously feel as though I am failing with. Many of Silas’ conditions are invisible to the eye, but I do believe this one is the hardest one to explain, because it can only really be explained by him. I wish I could ask him, “Can you hear me?” and know his answer.
I listen to other parents of children with hearing loss. “Mine started talking at age 2.” “And mine started talking at age 6.” “My child has never spoken. My child is nonverbal at age 18.” I think too far ahead. I wonder when and if we will ever speak in sentences to one another.
I am not sure I ever understood how very much I take for granted each and every day. I sit here listening to the birds outside. I listen to my washing machine running all the way in my basement, the water flushing through the pipes. The sound of the fan down the hall and the wall clock ticking are just a couple of other distractions. Every time a car begins it’s way down my road and people close their car doors, I hear all of it. I hear dogs barking a block away and can even hear the wind rustling through the leaves. I put my hands over my ears and try to understand what my son’s world must feel like.
Out in public, nice strangers will come up and say hello to him, drawn in by his smile. They will say hello over and over, and out of habit I will say, “Silas, tell them hi!” I know that he can’t. Can he hear them, or can he just not speak the words? It is a frustrating feeling as a parent not knowing the best route to take to help your child. It is frustrating talking with professionals that want so badly to help and try their hardest but really can’t tell you anymore than what you’ve already been told or have tried. You aren’t really sure what questions to ask or how to advocate for more information. Picking up the phone to ask for help seems easy, but what you really want to do is cry out, “Somebody! Anybody! Help me to understand my son!”
I watch him play. He grabs the toy car and moves it across the carpet, up his arm, to the table. He reaches it up in the air to motion for my attention. On most days, he uses whatever communication tools are available to him. He motions the word “light” with the opening and closing of his hand. On and off. On and off. He reaches to the wall and wants me to take him to the light switch. He smiles and softly giggles at his interaction with me and the light, and I see in his smile that he is overjoyed by my understanding him. He mouths, “La la la,” and I know he has been absorbing the words leaving my mouth. He rolls the ball to me in the hallway. He swings his hand to motion for me to “throw” and forms a circle with his hands to let me know that it’s the ball he wants. He claps because although he might not hear me well, he has communicated his wants and I have responded. He is happy. So incredibly happy.
I spend days yearning for words, spoken out loud, just the sound of his voice. The voice that is somewhere beneath the halfway-muted growls, cries and babbles. I repeat myself over, and over, and over. “MA-MA! MOM. MMMM. You can do it Silas. Say ‘Mommy!'” He brings his thumb to his chin and in an emotional reaction, tears form in my eyes. I quickly realize he has been saying my name this whole time. He calls to me, in his own way. In this beautiful language that we both can understand.
I am instantly filled with warm fuzzy feelings thinking about my child. This child that continuously amazes me, and yet I sometimes fail to see all of his potential and victories because I am too consumed by my own fear of failure in teaching him. “Have I done enough today? Is he learning? Am I giving him the tools?” But I watch him and realize he is the one who will be teaching me. So, so much.