Poems & Essays

13 Jul

A Lane of Our Own

General/Column No Response

Standing in the foyer at the back of the church that August morning, my six-year-old son Alex, gel hardened into his dark brown hair, wearing the smallest tuxedo I had ever seen, waited his turn. He was the ring bearer in the wedding of his oldest cousin; I was his assistant. When the white lace dresses of the flower girls in front of us became more distant, it was our cue. I reached for his hand and together we started to walk down the aisle. But after a few steps, it started.

“I want to go home Mommy-,” I heard him say softly (or maybe I imagined it?). I gently squeezed his hand, forced a smile, and we continued the walk.

“Mommy, I want to go home-” he repeated. I hadn’t imagined it. I started to wonder if people could hear him, or could see the sweat sopping through the capped sleeves of my black cocktail dress.

“Mommy I—.” But he didn’t need to finish. I turned us around and together we walked back down the aisle. Yet, I was never more proud.

Alex was born weighing a little over a pound; a ” micro preemie” of premature babies. His diaper could fit into the palm of your hand, yet it still was too big for him. Health issues invaded the days, weeks, and months to follow, while wires and tubes would connect him to machines that would do for him what I couldn’t. It was three months before I could hold him in my arms.

His body healed, but as time went on, the jumpiness he first showed while in the Neo-Natal Intensive Care Unit did not go away. He seemed anxious and angry always–at change in routine, at parties, at loud noises and new noises. He once ran through a set of bushes at his pre-school because of how the sound of the front door buzzer felt to his ears.

Eventually, we had a diagnosis, a title for this unpredictable film we were living in: Pervasive developmental disorder, not otherwise specified, or PDD-NOS. I thought it would be like treading in the shallow waters of the autism sea, except that wasn’t it at all. My curious, sensitive boy, who knew all the letters of the alphabet and asked the best questions, struggled with simple tasks. Because of his sensory issues, “fun” was work for him.

During the first year of his diagnosis, I kept thinking about a picture book that I read to my class when I was a teacher, an African folk tale titled, “Why the Sun and Moon Live in the Sky.” The Sun, who sought adventure, was enchanted by the Sea and invited her to visit the home he shared with Moon. Moon, who loved things in their place, was reluctant to welcome Sea, fearing she would wreak havoc on their home. Once the Sea came, she took over the house, forcing Sun and Moon to climb up to the roof of the house. They eventually sought cover in the sky, never to speak again. I realized now that the tale said nothing of the stars or of learning to swim.

Being part of a wedding party is a big deal for any child, but even more so for a child like Alex. This ring bearer business was a plunge, as each step we took to prepare unfolded into smaller steps. First, there was the haircut. It started with his behavior therapist bringing over a platinum blond wig for Alex to practice cutting. On another day, an assistant teacher at his school, who moonlighted as a hairdresser, visited our house. She opened up her kit of shiny metal and explained all her tools to him, building up enough trust to cut his hair the following week with minimal tears.

Then, we did a run-through of the church. This was not the church we usually attended, and I’ve learned that it takes time to build comfort in a new space. So we visited the church, twice, and talked- about the doors, the lights, and whether we heard an echo. I guided him; he guided me.

There were several other challenges: wearing new clothes (stiff), and new shoes (with laces!), and taking photos, as he winced a little every time the shutter clicked. But Alex worked through each of them. Now walking down this aisle in the church, in a room filled with many strangers, I heard his voice, with fear rising in it, and I decided to turn him back around.

Later at the reception, a family member, her eyes pooling with sympathy, remarked that maybe it would have been better if my daughter was chosen to be in the wedding party instead of Alex. “She would have done it!” the person said. But Alex did do it, I thought to myself. I wished I said it out loud, but that voice would come later.

The morning after the wedding, when Alex made his way downstairs, I wrapped my arms around him and told him how proud I was. “I never want to be a ring bearer again.-That tuxedo is stupid!” he replied, but he hugged me back. I breathed him in, along with his accomplishments over the past few months, these solid and precious nesting tables, each one tucked into the other, some invisible to others but no less valuable.

We didn’t talk about his stint as a ring-bearer much after that. But a few months after the wedding, the couple sent Alex a thank you gift—a Christmas ornament with the picture of him walking down the aisle. It was in the shape of a star. He was smiling.

 

 

Anne Marie Cellante is the mother of four children- a set of 10 year old triplets with special needs (two boys and a girl), as well as a “neuro-typical” seven year old girl. She taught elementary school for ten years, and in many ways still considers herself a teacher. She resides with her family in Tarrytown, NY.

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