Sunday, May 1, 2011

eSpecially Parents: Elisa's Story

Samson was born pink and healthy, with a content disposition that made those first days with him dreamy. His earliest weeks home were a wonder. His presence in our small house was bigger than life. Every flat surface was covered with his things – diapers, wipes, burp cloths, sterilized bottles, and the many lists that I made to record every ounce of formula he drank. He didn’t cry, as I was assured in birthing class, to let me know he was hungry or wet. I came into motherhood on a pretty thin line of confidence. I did what I could - I trusted God – I followed His direction, learned to trust my fragile instincts, and fell hopelessly in love with all of my heart.

The earliest days were peaceful, almost pastoral. Samson napped in a cradle handmade for him, and I put it near a window close to my desk. As I worked, the sun would filter through the leaves outside the window, bathing his sleep with dappled light. After that hottest summer, shorter days turned colder and the first falling leaves swirled in the wind. In the quiet autumn I took my son on long walks in his carriage and imagined it would always be as it was then.

Samson’s first Christmas came with a brief flurry of snow and a jolt of reality. A few days later, I took him to a six-month well visit with the pediatrician. In the exam room a nurse checked vital signs and took some measurements. My joy must have been quite apparent; the nurse reached and touched my hand and gave me a warm smile. When the doctor came in, she seemed concerned about my son’s head circumference that she said was disproportionate to his other measurements. My husband and I are both small people, so I didn’t pay much mind at the time. But the doctor insisted on a cat scan to rule out craniosynostosis, which meant that the soft, membrane-covered space between the bones at the front and the back of a young baby's skull may have closed prematurely and would inhibit normal brain growth. She also looked into our son’s eyes for a long time and seemed even more concerned about their misalignment.

Our doctor scheduled a cat scan for early the next morning. I remember feeling frightened at how insistent she was to schedule the test so soon. Then we waited for what seemed like forever to get her call in the following days. As it turned out, the test did rule out the premature closing of the skull. The relief we felt then became just a short-lived irony. What the scan did reveal was structural abnormality within the brain itself. There is a small bridge-like structure – the corpus callosum - that enables communication between the brain’s two hemispheres. The cat scan indicated an abnormality with the connection in our son’s brain. Immediately we were scheduled for an MRI, which would show a more detailed image of our baby’s brain.

I remember how bitter cold it was walking through the hospital parking lot. The lightness I felt months before was gone, replaced by anxiety and dread at what the first of many tests would reveal. My memories of that day are clouded, intermixed with the loud pounding sounds of the MRI machine. I cannot get the chronology straight in my mind. It was all fog and blur, and soon it would not matter. Within a few days and a visit to a neurologist from the University of Pennsylvania Hospital, our new little family entered a separate world from the idyllic peace we’d established, to a place with a different truth.

The neurologist described calmly that our son’s brain was missing an essential structure responsible for bridging communication between the right and the left hemispheres. Agenesis of the corpus callosum is a neurological disability in which developmental milestones such as sitting up independently, walking, and talking are delayed. Children with agenesis of the corpus callosum fall behind their peers quite early in childhood without the typical skills of abstract reasoning, problem solving, and social development.

Without the ability to effectively communicate, children with the anomaly often remain in worlds without peers and the fulfillment of friendship.

What I’m left with now is a strength that comes from a promise I made with God. I have a pretty daunting mission. Yet, I am reminded daily that “to whom much is given, much is expected.” So many days I grow weary of this role and even question why God would choose me for this assignment. Then there are just as many days of the brightest light when a kind woman behind me in line at the market will smile at my son, grab my hand, and remind me that I am blessed to have such a child. There have been kind people like that woman who seem to enter my life just in time to catch me before I fall too deep into self-pity.

Samson is thirteen now. He’s a strong and healthy child with a funny and quirky personality. I know he struggles daily with his communication and expressing his needs and his desires. I have become his primary playmate, and I’ve watched younger children grow up around him and eventually develop out of his ability to comprehend.

Outside of our inner world, we are constantly reminded that Samson is different. When he was very small and not yet able to walk, he’d power down the slide into my protecting arms, as others moved to the other side of the playground safe from the possibility of a social encounter. We’ve learned to live in the everyday reality that some people will never know him, never gaze into his eyes, never hear how ordinary words sound like music when he speaks them.

Afternoons in Springtime, through open windows I hear the shrill voices of children in the street. None of them will come to knock on our door. But it’s the social gatherings with friends and family that are the most difficult. Sometimes, in summer, after it gets dark, the other children run through the backyards to catch fireflies. Samson just watches through the screen door. He cannot keep pace with them. Sometimes I can pretend it doesn’t matter. But I know he’d rather be running through backyards clutching an empty jar with holes punched in the lid. I know he’d rather smell the same air, catch the same fireflies that he only sees from the porch door, through lonely eyes.


Read more about the eSpecially Parents Series here.

2 comments:

  1. Thanks for sharing.. Great stories

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  2. you know after reading this I am not sad for Samson who is a loving, tender, lively little boy, but I am sad for those who will never get to know him and be able to feel the love he has so much of to give!
    I love you with all my heart Samson!
    Aunt Linda

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