What Matters

by Stephanie Christensen

 

The doctor slaps the large black-and-white images onto the illuminated X-ray reading panel, and my mind travels back to the time I sat holding the sedated body of my son, then three years old, in the hospital’s waiting room. As I fought back tears, I wondered at the strangeness of embracing the still small form that normally squirmed with life. Soon the nurse came, lifted him from my arms, and placed his tiny body inside the oppressive white machine that enabled the doctors to see inside his head in order to discover just what lay behind the deformed ear, and whether anything could be done about it.

My mind travels further back, to the long nine-month time frame when I speculated, after two sons, if my baby was a girl this time and, more importantly, if it was healthy. Sometime during the first trimester of pregnancy, the doctors offered me a fetal test to determine whether my baby would have problems. I understood that there were some parents who feel that a ‘less than perfect child” is better off not being born. At the time, I decided the test wasn’t for me. I felt that whether my baby came “defective” or not, impeding its birth was not my decision. My decision was to raise and love the child in whatever condition it came.

Now, sitting next to the audiologist in the dimly lit soundproof booth, I watch Ben, my eleven-year-old son, through the double-paned window where he alternately fails and triumphs at deciphering the sounds coming to him through the earphones placed askew on his head as the doctor switches the sound back and forth between his left and right ears. Not much has changed in the even years that have passed since I sat and watched a younger Ben through the very same window. Though he is almost completely deaf in his right ear, his left ear still compensates wonderfully for the difference.

The audiologist asks me how Ben is doing in school. I remember worrying before he started kindergarten that he might not be able to do anything children his age do. Would his functioning ear fully compensate for his hearing loss? How would he handle the attention that would inevitably be drawn by the deformity? After all, kids can be so cruel. Most distressing, however, was the fact that external abnormalities often indicate internal complications. The doctors warned us that kidney problems often accompany auditory conditions. In addition, they did an angiogram to check the blood vessels in his brain for abnormalities. Their reports revealed things like “no evidence of intracranial mass, hemorrhage, or extra-axial fluid collection,” but I worried about the things we didn’t know about, things-psychological things-that we couldn’t see. The doctors examined him as thoroughly as possible but informed us we would just have to wait and watch closely for future complications.

I wonder if Ben can see me through the booth’s windows. Can he see the mixture of love and anxiety on my face as I watch the blank expressions that cross his features when the sound is switched to his right ear? I think about how, really, his inadequacy can’t count for much because at home we don’t focus on his deficiencies. Instead, we focus on the things he can do.

Day after day, I sit on the couch and watch his body sway to the music he creates as he deftly draws the horsehair bow across the strings of his violin. Ben has an ear for music, and within a year’s time he’s sailed past other students, mastering movements from Bach to Boccherini. As I listen to the struggles other mothers face with getting their children to practice, I marvel how his self-motivated, seven-days-a-week week dedication to practicing has earned him the glowing approval of Mrs. Brown: “Every teacher dreams of having a student like you,” she beams and then adds, “and I got you!”

I reflect upon how grateful I am for those who see the good in others. To most, Ben’s friendly, sunny disposition hides the fact that his features are a bit unlike their own. “I’ve never even noticed a difference!” is something I often hear when someone discovers the visibly smaller, deformed ear. Now, as Ben and I listen to the doctor and consider the pros and cons of the reconstructive surgery required to rebuild the eardrum, I reflect upon all that the past eleven years has brought us and seriously consider if the difficulties are worth it.

One early morning I noticed the bathroom light on. I walked down the hallway to see which of my four sons was there. Eight-year-old Ben stood gazing at his reflection in contemplative consideration.
“I don’t like my ear, Mom. It’s so different from my normal ear. It makes my face look weird,” I stood behind him and studied the noticeable contrast between his right and left ears. For a moment, my heart ached over the trials that had come and that would come because of Ben’s difference. And then I remembered that good had come and would still come because of the difference.
“Why did I have to be like this?” he asked.
“You are beautiful, Ben,” I responded, “And I love you, everything about you.” I wondered if I could even begin to express the joy that he’d already brought into my life.
“It’s really what’s in here that matters,” I counseled and I laid my hand against my chest, knowing that words couldn’t possibly take away the hurt he felt. I gently kissed his cheek and hoped he would feel my sincerity.

In so many ways, I am reminded that it’s not about the ear or his outward appearance. I am reminded of the things that really matter. On Saturday’s, it’s a time-honored tradition for the brothers to go with Dad to get treats after the soccer games that have nearly become an obsession for our family. Dad, the-coach, had to be there early one Saturday, and I had come over separately in the van. As his three brothers, without second thought, piled eagerly into the truck in anticipation of the post-game goods, Ben hesitated, turned around, and started towards the van.

“Do you want me to come with you?” he tenderly asked. I knew full well the sacrifice he was making.
“You go on ahead with your dad and have fun,” I replied.
“Are you sure, Mom? I don’t have to go.”
“You go on with your dad,” I smiled, touched by his concern. “I’m just fine.”

Last month, our family was assigned to speak at sacrament meeting.
“Now which one is the third one?” a friend asked following the meeting.
“Oh, that’s Ben,” I replied.
“Ir was so cute the way he would speak and then look up to smile at everyone,” she commented, noting the difference between Ben and his more somber siblings.
“He’s always smiling,” I had to admit.
One day, after his brother Chad had had a particularly rough morning getting ready for school, I demanded angrily, “Turn around and leave Chad alone. NOW, Ben!” as we drove to piano lessons.
“I’m just trying to make him happy again, Mom.”
Humbled, I glanced in the rear view mirror to see Chad’s tear-stained face brighten as they played the hand-over-hand game in the back seat.

Almost halfway through third grade, Ben arrived home from school each day and seemed out of sorts. Uncharacteristically grumpy, he complained about practicing and snapped at our family over trivial issues. I wondered what was going on with him. Then one day as he rummaged through the kitchen cabinets for an after-school snack, the truth came out.

“Some of the kids at school were making fun of my ear. They asked what’s wrong with me.”
“What did you tell them?” I asked.
“Oh, just that I was born that way. . . . Mom, I really don’t like them talking like that about me.”
“Maybe we should talk to Mr. Oyler about it.”

“I don’t know.” he hesitated.
“Mr. Oyler is a good teacher, Ben; I think he’d want to know.”
The following week, Ben explained that Mr. Oyler had asked a quadriplegic man to visit the classroom. The children talked about differences and about seeing the good in others.

My pre-kindergarten concerns about his ability to compare academically faded entirely as Ben’s yearly straight-A report cards and predominantly positive social experiences repeatedly reflected his capacity for excellence. Were the deafness and deformity really cause for concern?

On our trip to Texas one summer, I noticed that as our flight descended into Austin, Ben didn’t look so well. He’d had a cold for a week; and now his skin was turning a pasty gray, and he was complaining of a sick stomach.

“My ear feels funny, Mom.”
“Open your mouth like this,” I advised, stretching my jaw open as far as it would go. He tried.
“Nothing’s happening. ”
“Plug your nose and try to make the air go out through your ears.”
His face turned a slight shade of pink with the effort.
“Nothing. Mom, I feel so dizzy.”
As the color quickly drained from his face, I reached instinctively for the airsick bag in the seat pocket.

At my sister’s house, Ben seemed to be feeling better. As he and his cousins played in the family room, I wondered how he was and called out to him. No response. Thinking he was just doing the usual tune-Mom-out-because-I’m-busy thing, I called again, a little louder. When he still didn’t even glance my way, I walked to stand behind him and, in a normal tone of voice, tried to get his attention.
“Ben, do you hear me?”
A look of confusion clouded his expression as he turned to face me.
“Did you say something, Mom?”
Becoming concerned, Nicole and I tested his hearing. We whispered to him, and I became alarmed as he struggled to read our lips in order to help him decide what we were saying.

Dr. Donahoe informed us that his “good” eardrum was highly inflamed, filled with fluid and dangerously close to rupturing. He explained that the decrease in cabin pressure on the flight had affected Ben’s equilibrium because of infection and could have caused the drum to burst. Over the next week, I faithfully administered the antibiotics and nasal spray the doctor had given us and we practiced the nose-plugging technique we’d need to survive the return trip. As we flew uneventfully back to Utah, I contemplated the seriousness of the situation⸺Ben might have been left totally deaf.

After carefully contemplating the X-ray images, Dr. Park informs us that the surgery to restore hearing is possible, but not risk-free. My heart pounds at the prospect of Ben hearing in surround sound. I imagine what it will be like for him to hear Bach and Boccherini with both ears. I watch Ben’s body stiffen slightly as the doctor removes the wax buildup from the tiny blind pouch that should be his ear canal. Dr. Park describes the surgery as “delicate.” He will have to drill through bone and graft skin from Ben’s arm in order to create a new canal. Because the structures of the outer and middle ear are so misshapen, there is a slight risk of damage to the facial nerve during surgery, not to mention the risks⸺from paralysis of the vocal chords to even death⸺associated with general anesthesia.

It’s not an easy decision. As I weigh the pros and cons I realize that it’s not about the ear really. Ben’s rich, happy life testifies to that. I will continue to focus on raising and loving him, and maybe, someday, when he is ready, he will know for himself if it’s worth the risks to hear with two ears.