Article: Loving My Son, After His Death

Article: Loving My Son, After His Death


By Nora Wong
Dec. 2, 2016

I can feel their unasked questions. People wonder how I can still stand, still walk, still laugh. But they don’t ask. You can’t ask that of a mother who has lost her child. My son, Daniel, died three years ago at the age of 22. When people ask me, “How… are you?,” that pause, that inflection, tells me that’s really what they want to know.

I am tempted to tell them that it is I who am lost, not he. I am lost in my search for him, knowing he is nowhere on this earth. And still, it would not surprise me if he were to appear by my side wearing only his jersey boxers eating a snack at the kitchen counter. At times I can almost smell his warm cheesy breath and his still-boyish sweat. But when I look over my shoulder, he is not there.

My mind invents stories. Daniel is not dead; he is lamenting the performance of his fantasy football team with high school buddies while they wait on line for ice cream at Magic Fountain. He is in his dorm room at Stanford, talking deep into the night with his friends. Daniel is lingering with new friends on the rooftop of his investment firm in Boston where he just started working.

“Where are you, Daniel?” I shout the question to the sky when I am strong enough to bear the silence that follows. “Why did you die?” Even that has no real answer. His doctors think Daniel died of new onset refractory status epilepticus, or Norse, a rare seizure disorder in which healthy people with no history of epilepsy suddenly begin to seize uncontrollably. The majority of patients die or survive with significant brain damage. There is no identified cause or established treatment for Norse. This cloud of uncertainty does not obscure what I know: My child is dead.


The instinct to protect one’s offspring runs through mothers of virtually all species. I violated the basic canon of motherhood. I failed to protect my child. That my child is dead while I still live defies the natural order.

I love my husband and our two surviving children, but I couldn’t simply transfer my love for Daniel to them. It was for him alone. And so, for the longest time after his death, my love for Daniel bruised me.

So unbearable was my occluded heart that I called out to him in desperation one day: “What will I do with my love for you, Daniel?”

My eyes were closed in grief when suddenly I seemed to see him before me, his arms bent and lifted upward in supplication. In my mind’s eye, his face was suffused with love and tinged with exasperation, a common look for Daniel.

“Just love me, Mom,” he says.

“But where are you?” I ask.

“I’m here!” he answers with frustration. And then he is gone.

I had not heard his voice since the day before he suddenly fell ill. I spoke to him while he lay unseeing and unmoving in the hospital bed. I told him I loved him. I begged him to speak to me. I begged him to come back to me. He never answered or moved to squeeze my hand. The only flicker from him over his 79 days of hospitalization was a single tear. One day a tear slid from his left eye down his cheek and disappeared beneath his chin.

And now, months after he had died, I felt him before me.

“Just love me, Mom. I’m here!”

His words unleashed a torrent. I fell forward, my tears streaming. I felt breathless with release. I could continue to love him. I would love him in a new way.

It was harder to do than I expected. I would see him everywhere, in every full moon, in each brilliant day. My spirits would soar. But there were days when a weight in my heart made each breath shallow and every step an effort.

On the worst days I sit before my laptop and pour out my feelings to the only person who can take in my sorrow and remain unbowed. The keyboard is damp when the final refrain leaves my fingertips: I love you, Daniel, I love you. I miss you. I miss you. And then I press “send.”

Daniel’s friends continue to visit us. It is a pilgrimage of sorts. My heart tightens when I see them. Their presence illuminates our immeasurable loss.

His friends reveal to me how much Daniel meant to them. Now there will be a missing groomsman at the wedding and empty air in the place of a steadfast friend. At the end of one visit, a young man asks, “Recognize this sweater?” I don’t. “It’s Daniel’s,” he explains. I suddenly recognize Daniel’s old cotton sweater stretched to fit his friend. The young man folds forward to touch the sleeves of the sweater, hugging himself. He is tall and blond and athletic. He and Daniel were opposites in looks and temperament, best friends since nursery school. He had just returned from Moscow where he was working. “I wear this when I travel,” he says, touching the arm of the sweater again. “It’s so soft.”

I encourage Daniel’s friends to tell me about their work and their plans for the future. At first they are self-conscious, and their voices are tender. They don’t want to hurt me with their future plans when there is no future for Daniel. But as they speak of the things they will do and the places they will go, their excitement breaks free. I smile into the glow of their unlined, earnest faces and I feel my son. I think they feel him too. For a moment we are all reunited.

I will carry this child for the rest of my life. He lives within me, forever a young man of 22. Others will carry him as they move forward in their lives. He will be with them when they look out to the world with compassion, when they act with determination and kindness, when they are brave enough to contemplate all the things in life that remain unknown.

I still search for him, but without desperation. I look for him in others. My search is lifted by his words: “Just love me. I’m here.”

Nora Wong, the executive director of the Norse Institute, is working on a memoir.