9/11 Was A Tragedy, But My Son Isn’t

11-towers-burning. jpg

photo-of-baby-Max-from-love-that-max

At the end of summer, about the time when the nights turn cooler and I spend my weekends scouring stores for school clothes and supplies, I start thinking about 9/11. As the 10th anniversary approaches, it’s on my mind even more.

When 9/11 happened, it was the biggest tragedy to ever occur in my life. Fifteen months later, I gave birth to my first child. He had a stroke at birth. And suddenly, my baby became the biggest tragedy of my life…or so I thought.

*  *  *  *  *  *  *  *  *  *

“I didn’t hear the first plane hit, but I heard the second one.” That was the ticket seller for the ferry talking on the morning of September 11, 2001. I was en route from Hoboken to my job in New York City; it was a blue-sky day, one filled with possibilities, and I’d decided to take the ferry instead of the bus. Right before I left, Katie Couric had announced on the Today show that a plane had hit the World Trade Center. “Accident,” I thought, and left the house.

I had asked the woman in the ferry booth if she’d heard the plane crash into the tower. When she mentioned a second one, I knew something was terribly wrong. But I boarded the ferry anyway and went straight to the upper deck.  As it crossed the Hudson River the towers came into view and the other passengers and I stood in silence, gaping. The upper floors were burning, smoke billowing out of windows. It was a shocking sight and yet, I thought the good firefighters of New York would handle it.

The horrors of the day unfurled as I sat in the office conference room with colleagues and we watched the news on TV. “Did the tower just fall?” I asked the guy sitting next to me. He nodded, and I felt sick to my stomach at the thought of all the people inside who had probably lost their lives. Even now, it’s hard to comprehend that thousands of people—office workers, firefighters, other rescue workers, plane passengers—died in the final 102 minutes of the World Trade Center.

During the week that followed, I mostly sat on my couch, watched the news and cried as people spoke of loved ones they had lost and cameras panned over Ground Zero. I kept hoping workers would find survivors buried in the wreckage. Many young men and women who lived in Hoboken had worked in the towers, and “Missing” signs emblazoned with their photos were plastered around town. The signs stayed up, growing ever tattered. The faces haunted me.

For months after, I’d roam the web and read articles about the families of the survivors. I’d scan lists of names of people who had been killed. Once, I attended a session at the office about coping with grief. My husband and I didn’t personally know anyone who had died, but what happened felt no less personal.

It was the biggest tragedy of my life.

*  *  *  *  *  *  *  *  *  *

Six months later, I learned I was pregnant. My son, Max, was born in December 2002, looking perfectly pink and healthy. The seizures started the next day. An MRI revealed he’d had a stroke—a large stroke, a bilateral one, that caused damage on both sides of his baby brain. My husband and I were devastated; we’d had no idea babies could have strokes. That was something that happened to seniors and men with bad cholesterol, not newborns. Only it turned out strokes in infants isn’t that uncommon, a 1 in 4000 occurrence.

A grim pediatric neurologist told us that Max might never walk or talk, that he could have cognitive impairment, and even vision and hearing issues.

“I don’t want a handicapped child!” I blurted, my mind crazed with despair and disbelief.

“Well, you could sign a Do Not Resuscitate,” the doctor said.

Max stayed in the NICU for two weeks, unconscious for a good part of it. A very wise doctor urged us to get him as much therapy as possible. A young resident spoke kindly about the “plasticity” of babies’ brains, and how they had much potential to regenerate. A good friend brought us a copy of Dr. Seuss’s “Oh, The Places You’ll Go!” and I read it to Max as he lay in his incubator, my lips pressed up against a vent hole.

After we brought Max home, on seizure medication, I watched him obsessively for any sign of distress and called our local Early Intervention office to get him enrolled. Meanwhile, I struggled with depression; I couldn’t get past the tragedy of my son. I refused to talk with friends on the phone. I shoved the “Congratulations on your new bundle of joy!” cards and presents into a closet. I felt no joy, only grief.

One night, after my husband arrived home from work, I handed Max to him, went to bed and sobbed uncontrollably. Dave walked in holding Max.

“This is my worst nightmare,” I wailed.

“Honey, look at him, he’s beautiful,” said Dave. “Does he look like a nightmare?”

His words calmed me down. No, to be sure, my boy did not look like a nightmare, with his big brown eyes, long lashes and chubby cheeks. He was a child who needed all the help I could give him. I knew I had to stop mourning the baby I did not get—and give everything I could to the one in front of my eyes.

*  *  *  *  *  *  *  *  *  *

Max’s challenges became clear early on: His arms and legs felt stiff and his hands were typically clenched. He didn’t babble. Even sitting up proved to take major effort, months in the making. Eventually, he would be diagnosed with cerebral palsy.

And yet, Max amazed us all. He smiled at two months old. He commando crawled, like an army soldier, at 15 months and crawled on all fours at two. He took his first steps at 3, on his third birthday, as Dave and I stood in his room and wept from happiness.

As the years passed and Max kept progressing, I moved on as well. I felt less sad about the stroke. I no longer considered Max defective. I saw him for who he was: my child. A child, in many ways, like any other kid.

Today, at 8, Max doesn’t just walk—he runs. He speaks some words, and uses an iPad with a speech app to help him communicate. His sight and hearing are fine. He is a sunny, bright, determined, purple-loving, spaghetti-obsessed kid who charms everyone he meets. Miracle, yes; tragedy, no.

9/11 remains the tragedy of my life. Ten years have passed and yet, the senseless deaths of children, fathers, mothers, brothers, and sisters still seem like a recent nightmare. Nothing can compare to the horror. Nothing.

Someday, Max might be able to understand what happened on 9/11. When that time comes, I will explain it to him. We’ll visit the Reflecting Absence pools at Memorial Plaza, and I will read off the names of victims. Surely I will kiss his head‚ as I so often do, and feel very, very grateful for my beautiful boy.

9-11-memorial-pools-rendering-Michael-Arad

love-that-max

Twin Towers/Lil’ Mike

Rendering of memorial pools/Michael Arad

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  1. by Katy

    On August 25, 2011 at 4:18 pm

    Damn, Ellen, you’ve got me crying with this one.

  2. by Holly

    On August 25, 2011 at 10:05 pm

    Ellen, you have such a way with words. I have tears rolling down my face. You are one of the strongest, most honest women I know and I so proud to call you my friend.

    More than that, Max is so lucky to have you as his mom.

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    On August 26, 2011 at 9:08 pm

    Beautifully written!!!!!!!!!!!!

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    Ditto. Tears. Thanks. My son has Down Syndrome. Tears & much much joy. Your son is adorable. Mine too. :)

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