Remembering Rotem: parents write about the ICU experience and their grief

I was moved by an article describing the life and death of Rotem Engel, the public internet updates by his parents Dana and Oded and the internet circle that supported them as their young son struggled to live and then died in ICU. They do not know what caused his symptoms but they moved mountains to bring him up to age 6 and loved and cared for him fiercely. They poured their heart out on the internet as he was in CCU, relating how they begged their son whose organs were failing to not give up, the father's lament that he failed his son, questions as to did they do enough. I could feel again that sickening wait between endless tests to see if a failing organ will rebound and your child survive - without even knowing what comes next. The article ends with discussion of public grief writing and support on the internet and touches on sibling loss and grief work with a detailed look at how intensive the ICU experience can be if the parents wish doctors to provide every support available. Collective Coping is a painful, inspiring snapshot of the brave struggle of one medically fragile child and the love and support of his parents and the support of strangers in an Israeli internet forum.

The toughest question of all: Marshall Ward writes about Max and Beatrice Centre for Children's Grief and Palliatve Care

Reprinted from original in Waterloo Chronicle by Marshall Ward, April 25, 2007

"No matter how big or small, how weak or strong -- everything dies. We experience the sun and the moon, the wind and the rain. We learn to dance and laugh. Then we die."

- from the book The Fall of Freddie the Leaf

by Leo Buscaglia

My four-year-old daughter recently asked me what it means when people die.

Unprepared for the question, I felt the need to protect her and told her we would talk about it another time. Fortunately for me, Wilfrid Laurier University's faculty of social work provided a free public seminar last week on talking to children about death and dying.

The speaker was Ceilidh Eaton Russell, a councillor at the Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care.

Russell said most parents don't think about explaining death to their children until a relative dies.

"We prefer not to talk about it until we have to," said Russell. "Lots of caring people do the wrong thing for all the right reasons, and many parents don't want to expose their children to death and dying."

Russell said children do not need protection; they need competent guidance and honest answers to their questions about life and death.

"Children ask questions in a very direct way," said Russell. "Seizing the moment is important, and the best time to talk about the subject is when they want to."

In the seminar, I learned that if a child has been protected against sorrow, they will still react when they realize what has happened. Nobody can avoid grief; you can only postpone it.

Often, trying to protect a child will only cause them unnecessary anxiety and perhaps even guilt.

Children less than eight years of age are often interested in death and have complex concepts about it, but are not able to grasp its finality.

When telling a child that someone has died, make sure the word "died" is used, said Russell, using clear and concrete language.

"Children do not understand euphemisms," said Russell. "(Euphemisms) may help an adult feel better but they won't help a child understand what has happened. Avoid using 'sleep' -- kids worry that anyone could go to sleep and never wake up. "Also (avoid): 'We lost him' -- kids wonder where the person is and why they aren't looking for him.

"And 'passed away' is too vague for kids to make sense of."

Russell also stressed that when parents don't have an answer to a child's question, they should say so. It's OK for children to know that there are questions that adults, and even doctors, don't have answers to.

Listening carefully when a child asks a question is important, and it's helpful to understand what they know so far. Russell said kids are good at learning words and how to use them without always knowing their meaning.

"If a child asks, 'Am I going to die?' tell them that they will someday," explained Russell. "And if they ask whether a parent is going to die, they should be told that all people die eventually, while reassuring them that they will always be loved and taken care of."

I was especially touched by a story Russell told about a little girl who lost her father in a car accident. He taught her how to draw, and her mother often told her that if she keeps practising, she will always share an energy with him -- and that, in a way, her daddy is still teaching her.

Curious to know how questions about death and dying are approached at school, I asked my daughter's junior-kindergarten teacher. She lent me the book, The Fall of Freddie the Leaf.

In the book, Freddie and his companion leaves change with the passing seasons, finally falling to the ground with a winter's snow. With striking photographs, it's an inspiring and simple story illustrating the delicate balance between life and death.

At the end of her seminar, Russell shared a few books as well, with titles like Gentle Willow and When Dinosaurs Die.

"Also, sometimes kids aren't always looking for wisdom," Russell concluded. "Just a hug."

Marshall Ward is a visual artist and an independent filmmaker. Email is welcome at

Alexandra leaving

Suddenly the night has grown colder.
The diety of love preparing to depart.
Alexandra hoisted on his shoulder,
They slip between the sentries of the heart.

It’s not a trick, your senses all deceiving,
A fitful dream, the morning will exhaust –
Say goodbye to Alexandra leaving.
Then say goodbye to Alexandra lost.

Even though she sleeps upon your satin;
Even though she wakes you with a kiss.
Do not say the moment was imagined;
Do not stoop to strategies like this.

As someone long prepared for this to happen,
Go firmly to the window. Drink it in.
Exquisite music. Alexandra laughing.
Your first commitments tangible again.

And you who had the honor of her evening,
And by the honor had your own restored –
Say goodbye to Alexandra leaving;
Alexandra leaving with her lord.

As someone long prepared for the occasion;
In full command of every plan you wrecked –
Do not choose a coward’s explanation
that hides behind the cause and the effect.

And you who were bewildered by a meaning;
Whose code was broken, hope uncrossed –
Say goodbye to Alexandra leaving.
Then say goodbye to Alexandra lost."

This song resonated so strongly for me the first time I heard it, Sasha being the short form of Alexander. Anthony became the protector of Ceasar, Sasha protected our marriage. We had felt her leaving and loss, we had long prepared but still were full of questions and regrets, we felt tricked by fate, we drank in her presence, we still learn how to say goodbye.

Leonard Cohen, Ten News Songs 2001 (based on The God Abandons Antony, a poem by Constantine P. Cavafy)

Passover at SickKids Hospital and at home

We have celebrated the last two nights with the Steins and the Blumbergs, surrounded by the noises of Sasha's cousins, enjoying Mia's first Passover. Last year we laid out a seder in the Terrace Cafe at SickKids, drawing occasional glances from the hard working med students that frequent the large cafe during the quiet off hours. Sasha was just ok, she wasn't in great spirits, it was getting late. We felt it was important to celebrate passover at the hospital, knowing this would be, like every major milestone, Sasha's second and last. Toward the end of the meal we were joined by two doctors from the General Surgery team. There was a comraderie and spirit that night that I hope to never experience again in its weight and sadness; the talk of leaving bondage and singing Dayenu (Enough) quite symbolic after 4 months at SickKids Hospital and a deepening desire, with many fears, to return home.

Here we are with two of the General Surgery team.

And a flashback to Sasha at her first passover at Kenny, Cindy, Betsy, Sarah and Mandy singing Ma Nishtana and greatly appreciating Sasha's first Passover.

You can hear her little voice on this one as she explores the hagadah. Such a sweet little voice.