Julia's Life in Pictures

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. One of our regular contributors, Elizabeth Uppman, reflects on the role a hospice art therapist played in her and her daughter's life after the death of her son, Gabriel.

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Elizabeth Uppman

My son Gabriel was 3 when he died. His sister Julia had just turned 6. The following months were rough on everyone, especially Julia, who acquired a whole catalog of fears (dogs, tornadoes) and developed the habit of following me from room to room of our tiny house.

Stephanie, the art therapist from hospice, came for her first visit the week after Gabriel died. Stephanie brought clay and crayons and paints and beautiful big sheets of paper, and she and Julia sat down at the kitchen table to make art. Stephanie's visits didn't magically dissolve Julia's fears or make our going-to-bed battles any better, but for that one hour per week, Julia basked in her attention.

One of their projects was a pictorial history of Julia's life. Julia drew six scenes: her birth, our move from Mexico to Kansas, Gabriel's birth, Julia's first day of school, her fourth birthday, and Gabriel's death. The scenes are connected by round gray stepping-stones. In the middle of the picture is a seventh scene, an imaginary one, in which a white-robed Gabriel hovers over Julia. In cartoon word-balloons Gabriel says, "I see Julia." Julia says, "What, Gabriel?" Gabriel replies, "I see you."

Click here to view a larger image.

Fast-forward a couple of years. We have a new baby, Lucia, and are moving into a new house. Unpacking, I pull a picture out of a box. It is Julia's pictorial history, which Stephanie framed for us as a goodbye gift. "Hey, Julia," I say, "where do you want to put this?"

Julia dashes in from the next room, her long hair flopping. She has been videotaping the new house and wants to get back to it. She looks at her artwork – the blobby airplane, the people with no necks and cauliflower hands – and wrinkles her nose. Clearly, her artistic abilities have matured since then. "Do we have to put it up?"

"Well, we don't have to put it in your room if you don't want to."

She considers. "Can we put it in Lucia's room?"

"Why Lucia's room?"

"Well, she has to learn the story."

The picture is still hanging in Lucia's room, amid a taped-up assortment of Lucia's own art. Just now I went in to look at it. The airplane made me smile, its wings upraised like a bird's. I had never noticed that, in all three of Gabriel's scenes, he is smiling.

Elizabeth Uppman

But That's Not How It Happened On TV!

Elizabeth Uppman

In an interview, author/surgeon Pauline Chen reflects on why, at the end of life, many patients choose treatments and therapies that offer little hope for recovery. She suggests several reasons for this tendency, including this:

There was a study published looking at the outcomes of cardiopulmonary resuscitation on television medical shows. The success rate was phenomenal on t.v., but in reality very few resuscitated patients ever recover fully. These unrealistic media outcomes can influence how patients and their families view life support.

This study points out an obvious truth that is at the same time very strange: that we gather information about the world from TV, and that some of the information we gather comes from stories that we know aren't true. Take me, for example. I would never admit, with a straight face and right out loud, that I expect the same miracle that happened on the hospital show to happen for me in the real-life hospital. But in my gut, in my childish heart of hearts, I'm not so rational. My gut says: If that family on TV got a miracle, then why shouldn't my family get one, too?

So I think Dr. Chen is onto something. And it makes me wonder why. What is it about these shows that makes us trust them?

Maybe because, unlike most TV shows, hospital shows portray events that could actually happen. While you are unlikely to survive a plane crash on a spooky island in the Pacific, you might actually have a heart attack while driving your car down a busy street. And if the accident is possible, then the recovery ought to be possible, too.

But I think we imagine for ourselves the same success stories that we see on "ER" and "Grey's Anatomy" and "House" for a different, more compelling reason: because that is how our stories are supposed to go. Little Red Riding Hood is supposed to outwit the big bad wolf. Cinderella is supposed to marry the prince. And the little girl who almost drowned but was saved at the last minute by a heroic bystander – that little girl is supposed to get better. It doesn't matter whether that little girl is a TV character or a real person. She's simply supposed to get better. That's the way the story goes.

I remember walking into my son Gabriel's room in the ICU and hearing my husband say, "They asked me the question." I burst into tears. He didn't even have to tell me what the question was – I knew it was about Gabriel's death, and I knew it was part of the wrong story. The right story was the one in which the little boy recovers and goes home with his grateful parents and grows up to become a mathematician. I still love that story, actually, though it's no longer mine.

Elizabeth Uppman

Lighting Candles for Children

Elizabeth Uppman

This coming Sunday, December 9, is the Compassionate Friends Worldwide Candle Lighting. From 7:00 to 8:00 p.m. in every time zone, people will light candles to honor children who have died, creating "a virtual 24-hour wave of light." It's believed to be the largest mass candle lighting on the globe.

My family first participated in the Worldwide Candle Lighting in 2000, to honor my son Gabriel. What I chiefly remember about that first year was how my 9-year-old nephew wouldn't stop playing with his candle. We had bought scented votives, one for each family member, and had placed them in glass holders like tiny globes spread out across the dining-room table. My nephew tilted his candle to make the wax run, tipping it and twirling it until the inside of his globe was coated with wax and soot. All around him, the family murmured about Gabriel, how brave he was, how resilient, how sweet.

Worldwide Candle Lighting

At one point during these murmurings my nephew looked away suddenly, as if to avoid a slap. It startled me. I noticed how hunched his shoulders were, how heavy his head looked. For the first time I wondered what it must be like, to be 9 and to know your cousin is dead. I imagined, for the first time, what he might be thinking: Would they say those things about me, if I were the one? Would they say I was brave? Would it hurt?

This year will be our eighth Worldwide Candle Lighting. My nephew is in high school now, and probably too busy to come. I'll miss him. It would have been easy, at 9, to exchange his candle for the television in the next room -- to leave us to our grieving, to act as if nothing had happened. But he didn't. I'm grateful for his patience that first year, for his uneasy faithfulness to a global ritual.

Elizabeth Uppman

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Pictured above: David Ramos Ocasio of Cidra, Puerto Rico, daughter Bianca (left), and niece Aeris Rivera remember David's brother Alex, who was robbed and murdered while at work in the family business in 2004. They were among 500 who gathered in Parque Central in San Juan, Puerto Rico during a Worldwide Candle Lighting service. Photo courtesy of Tristan Reyes.

An Inordinate Response to Loss

Elizabeth Uppman

A dappled summer morning, a public park, a cluster of children – and me, screaming with rage. The boy I was screaming at was not even my own. I had caught him holding a bucket of water over my daughter’s sandcastle, and fury had lit me up like an avenging angel.

Through my yelling I could observe everything around me, as if the mild-mannered, everyday me were looking out from inside the new, furious one. I watched the other mothers gather their children, carefully avoiding my eyes. The boy’s mother, who had spent the last twenty minutes saying it was time to go (“…and I mean it this time!”), finally got off her park bench, grabbed him by the arm, and hustled him out of there. He grinned at me as she pulled him away, a cocky grin. But my daughter was smiling at me over the top of her sandcastle, so I went back to my magazine, satisfied.

It wasn’t until late that night that I considered the reaction of those other mothers, how wary they were of me – me! I wondered, for the first time, what had possessed me. Where did all that anger come from? Might it have had anything to do with grief?

I remembered that day in the park when I read this particularly thoughtful sports column. King Kaufman at Salon.com explores the outpouring of grief over the sudden death of Washington Redskins safety Sean Taylor. Interviewing a grief counselor, Kaufman asks: “OK, so let’s say I'm a fan of the Washington team and, hypothetically, let’s say my mom died five years ago. And I handled it pretty well. Now I hear about Sean Taylor, a person I never met and don’t know very much about... And I’ve gone to pieces over it. Am I making that up or does that happen?”

The counselor’s answer: “It definitely happens. And as grief counselors, when we see someone have an inordinate response to a loss, we're oftentimes looking at what else is going on.”

An inordinate response to a loss. Well.

A year and a half before that lovely, dappled morning, my 3-year-old son had died of pneumonia. I thought I had handled it pretty well. The nausea was more or less gone, as was the barely constrainable impulse to talk about him, and me, and the world of loss we had lived through. I could now trust myself to appear in public with all my buttons buttoned, and I usually remembered what day of the week it was and how to put gas in the car.

But that upraised bucket was too much. The universe had shown me, definitively, how easy it is to hurt small children – my children. I simply could not to allow any more of it.

I sometimes think of hunting down those mothers in the park to apologize for my craziness. I would tell them no, I’m not crazy – just grieving. Sometimes it looks like the same thing.

Elizabeth Uppman

With Alzheimer's Disease, the Losses Come Sooner

Elizabeth Uppman

Recent news reports tell the awkward last chapter of the love story between former Supreme Court justice Sandra Day O’Connor and her husband, John O’Connor. He was diagnosed with Alzheimer’s disease 17 years ago. The family recently placed him in a long-term care facility, where he has fallen in love with a woman who lives at the same facility. The O’Connors’ son, Scott, says his father acts like “a teenager in love… sitting on the porch swing holding hands.”

Alzheimer’s experts say these kinds of attachments are to be expected, and that the patient is not to blame. Kathleen Waldron, interim director of the ASU West School of Aging and Lifespan Development, says “A person who has dementia does not live in the same world the rest of us live in, and their reality may be completely different. You cannot take anything a person does with dementia personally.”

Wise words, but not easy to live by.

My grandmother has had Alzheimer’s for almost as long as John O’Connor. When I visit her at the nursing home, I wheel her down to the quiet room and sit facing her. I rub lotion into her hands, ask her how her day is. When nobody else is around, I sing. Grandma looks at me with a puzzled expression. Her eyes are curious but blank. She was once a modest person, shy and self-effacing. Now she stares straight at me, and I stare back. She doesn’t mind the kind of directness that once would have been unthinkable. She doesn’t hide anything because she has nothing left to hide.

It must be difficult for Sandra Day O’Connor to see her husband holding hands with another woman, just as it’s difficult for me to withstand the directness of my grandmother’s stare. This is not the way the person I love is supposed to behave. It’s sad – devastating, really – the things a disease can take away from us, things we thought were absolute. It makes you wonder, grimly, where the bottom line is, where is hidden that last and most precious thing that makes us ourselves, and whether that thing can be taken away, too.

Every once in a while my grandmother gives me what I’m waiting for: a smile. She smiles the way she always did, shruggingly, in a “well, here we are again” kind of way. She used to smile this way at the mistakes we kids made, the jelly on the carpet, the gum in the doll’s hair. Well, here we are again, her smile would say, and then she would hunker down and fix it.

I wish I could do the same for her – I wish I could hunker down and fix the Alzheimer’s that is erasing her story, line by line.

Elizabeth Uppman