Maria, the mother of a blind student, describes how she felt about her son's premature birth and diagnosis.
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When I look at my nine year- old son, I see my husband’s face. His square jaw, his chiseled cheekbones, his light brown hair, his delicate, perfectly proportioned nose. When my son turns to the side, however, I see myself. He has my ears. I have big ears. My father has big ears. Our ears don’t stick out from the sides of our heads, they are not malformed, but they are big.
I wonder if this physical trait is shared among us because we are all musicians: my father, a music teacher for 30 years, plays the saxophone, clarinet and flute; I teach the violin and piano; and my son has been dutifully taking piano lessons for four years now. It makes sense that for musicians, large ears would be an asset.
I think back to the first time I saw his oversized ears. Nine years ago I wasn’t concerned about piano lessons, I was just praying he’d survive. That’s because he was born prematurely, weighing only one pound, three ounces. I was just over five months pregnant when I was put on strict bed rest at Lankenau Hospital because of pre-term labor. After three weeks, the contractions couldn’t be stopped and my son came into the world sixteen weeks before he was due. I’d never seen a human being so small. It amazed me that his whole tiny body was already formed, from the wisps of hair on his head to his fragile little fingers and toes. Oh, and those precious ears.
Because he had arrived so early, my husband and I did not have a name ready for him. After four days the neonatologists were getting impatient. "We need a name for this baby," they told us. "The nurses can’t keep calling him ‘Baby Boy Number Seven’ when they talk to him through the incubator."
My husband and I scrambled. I’d been reading the Bible for solace and comfort during my weeks on bed rest, so we consulted the greatest story ever told to come up with a name.
"What about ‘Simon’?" my husband said, popping his head up from the Book of Acts. "There are a lot of ‘Simons’ in the Bible."
"It’s a good name." I said. "Simon was the man who helped Jesus carry the cross. Let’s go with that."
We proudly reported our son’s name to the head neonatologist.
"Simon says!" he answered, teasing us with a smile.
I hadn’t thought of that, but then again, in the game, Simon Says, Simon is always the boss. I wasn’t concerned about the potential teasing. I was glad to have a name to call my little guy who was so delicate yet strong.
"You’re gonna be OK, Simon," I whispered into the portholes on the sides of the incubator. "You’re doing a great job, little guy, just keep growing." Even then, when he was one pound, those ears must have been listening.
Soon after naming him, we researched the name ‘Simon’: "He Heard," from Hebrew. I wondered how this meaning would pertain to my son in his future. I found out a few months later. The doctors and nurses had warned us about the rollercoaster ride that was the life of a micro preemie; the medical staff was encouraging (and bordering on saintly), but they did not give us any false hope. My husband and I sighed with relief when Simon seemed to dodge each potential illness that the hospital staff anticipated: no brain bleeds, no chronic infections, and no life-threatening heart issues. We celebrated each milestone that Simon achieved: breathing without the ventilator, graduating from a feeding tube to a baby bottle, and the most visible accomplishment– gaining weight. After two and a half months, Simon was no longer dependent on oxygen to breathe and he had grown to five pounds. Then, one evening as we left the house for our nighttime NICU visit, the nurse on duty called us to say that the pediatric ophthalmologist would meet us there when we arrived. The eye doctor explained that, earlier that day, Simon’s eyes had been routinely checked for a condition called Retinopathy of Prematurity. The results were not good. Simon’s retinas had completely detached. He would be blind.
My husband and I felt the sharp dip of the roller coaster that we thought we had eluded. We insisted on a second opinion, and on this occasion my parents were present for the results. The doctor came to the same conclusion-that our little fighter would never see. My mother asked if she could donate her eyes to Simon. The doctor solemnly shook his head. Again, we scrambled. We scoured the Internet for information and we eventually found an extremely gifted retina surgeon in Detroit, Michigan. We were told that people came from all over the world to see this doctor. Once Simon came out of the NICU, we flew to Detroit every two weeks for surgeries and subsequent check-ups. After three surgeries, Simon was able to see light. This may not seem like much of an accomplishment, but in the blind world, being able to see light means a lot: it means that you can distinguish daytime from nighttime; that your circadian rhythm of sleeping and waking is not disturbed; and that light can be used to orient the space around you, whether it’s the light from windows in a room or fluorescent ceiling lights to guide you down a hallway.
Simon is now a healthy, chatty nine year- old with a sharp wit and long pianist’s fingers. He reads Braille and walks with a cane. He attends Saint Lucy Day School for Children with Visual Impairments in Juniata Park where he is mainstreamed with sighted students. And he’s still got those big ears. Those ears that my father gave to me and that I gave to Simon. Those ears that help him to distinguish the voices of his favorite radio sportscasters on 610 AM WIP. Those ears that detect the smallest sound when I think I’m silently gesturing to my husband. Those ears that fill my heart with joy when Simon tells me that he doesn’t need to see my face because he can hear me smile. I know that those big ears will serve him well throughout his life. He sees with those ears and I’m proud to share them with him.
Maria Ceferatti teaches private violin and piano lessons, instructs classroom music at Saint Lucy Day School for Children with Visual Impairments, and is the music director of Acting Without Boundaries, a theater group for young performers with physical disabilities.
This essay first appeared in Philadelphia Stories in 2011.
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