Virginia L. Fry, M.S.
Executive Director, Hospice and Palliative Council of Vermont
With Lynne Hughes of Camp Comfort, Richmond, VA
"Children and Grief: Coping, Creating and Being Comforted"
October 17, 2001

Virginia Fry: I was named after my aunt, Virginia, who died of cancer at 26 and left two young children. I never met her and I never understood the relevance of her life to mine. I just recently re-met her children who are now in their forties, and it seems to have been part of my past to see those kids in that situation ever since before I was born. I had the great misfortune of having my brother die when he was 21 in a car crash and that is how I know how loss feels. You only belong to that club in one way and that is a club none of us want to belong to. I know what it is like to live with intense pain and not be able to speak of it. When I went back to Boston from Arizona, I remember looking at my pizza and looking at my friends from MIT who I had just played volleyball with, and thinking, how can I be eating this pizza when my brother is dead? The two realities just didn’t fit. No one wanted to speak of it. That was 22 years ago and I did what I was taught to do when we don’t know what to do—go to the library. I went to the library and looked up "death" and "dying." There were two books. Elizabeth Hoover Ross’ first book on death and dying, and The Tenth Good Thing About Barney. It is still a very good dead-cat book by Judith Furous and I still have it. But, it is about a dead cat and not about dead brothers. So, there seems to be a big vacuum.

I went, as an artist, to work at hospices as a result of my brother’s death, and found that none of our training was about children. Children were never mentioned. It was assumed that all of our patients would be elderly and dying of cancer. And yet, children watch all these deaths occur at every moment. Now, since the tragedies on September 11^th, it is even more intense, it is on ever one’s mind. I have gone from school to school in the last month—medical schools, colleges, elementary schools and daycare. That is what the kids want to talk about. And we are all really kids—we are all about eight years old when it comes to death and dying. I was the artist, so I was the person available on a hospice team to be with the kids. Everything I know about surviving death and dying and creatively grieving comes pretty much from my artist background with my father and from these kids. So, today, I thought I’d show you some slides of their artwork, tell you some stories, show you some things I brought, because the harder the subject with kids and with adults, the more colors you have to have.

I talked about coming here to a little seven-year-old whom I’ve been seeing because his father, one of my nurses, died suddenly this summer at the age of 40 leaving a 7-year-old and 13-year-old daughter. This seven-year-old, Cyrus, has a little lisp that is very sweet. He got up spontaneously, spoke at his father’s service, and sang the Beatles’s song, I Will, a cappella, in memory of his father. So, I saw him five weeks after his father’s death and one day after the attacks, and I asked him if he knew what had been going on. And he said (with a lisp), "Yes, the terrorists did it. And I said, "They did, yes." And he said, "We will never ever ever know who they are." I said, "Actually, we have a list of everyone who got on the airplane." And he said, "That is good. Do you know what a terrorist is?" See, kids can say that their mother is dying of advanced pancreatic cancer with metastasized liver, and not know what a pancreas is. They can say these words, but you have got to ask. So, he thought awhile and said, "A terrorist is a tourist who brings with him terror." I said, "I think you’ve got it." Only, this tourist lived here a long time.

Another 12 year old, who was the sole survivor in a car crash in which his other 3 family members died, had been seen by every professional imaginable in a hospital who introduced themselves and their credentials. He was so sick of them, by the time I saw him two weeks later, he told me, "You tell them: I don’t care if you are a Ph.D., MBT, ABC, CPS, Md.P. I want to know who died in your family, how long has it been, how did you get through it, and how did you make it mean something?" Those are your credentials. You have to be willing to share those with children or you are not going to be of help. So, we’ll look at some of the kids’ stories.

This is drawn by an eight-year-old girl, named Laurie, whose father was dying of melanoma. She had been suddenly throwing temper tantrums in school and at home. In school she had hit her teacher, was sent to the principal’s office. This was a big change in behavior for her. Her mother knew that it was something to do with her father being sick, but she didn’t know what to do about it. So, she asked our social worker to come and do something about it. Our social worker had been hanging around with me long enough that she was carrying a box of crayons with her. So, she went and, instead of doing the usual social worker thing ("I understand you are having some difficulties at school. Would you like to talk about it?"), she just said, "Hi Laurie. I’m Eleanor. I’ve got a box of crowns. Do you want to draw? I’m going to draw." Laurie was suspicious. She knew she was in trouble—the big guns had been called in. But, she was curious to, so she sat down and asked what she should draw.

Eleanor said, "How about your dad? I understand that he is sick and he is at home and he is not even in the hospital and that you are taking care of him right here." So, she drew him, and you can see how odd he looks. It took me a long time to learn to read children’s drawings. I have been taught how to do it. It is basically a process of asking questions: what is the darkest thing on the page (like the piece that goes over the bed)? This is a hospital, everybody probably recognizes the trapeze. When Eleanor asked about it (because if it is overdrawn, it is important), Laurie said, "He is so sick. He cannot be in a normal bed. He has to be in a hospital bed. It has an air mattress that goes up and down. There is a big metal arm that comes over and every time I lean down to give my father a kiss, it whacks me on the head and I hate that thing." Nobody knew. It comes with the bed. Eleanor went to her mom and asked if they could take it off because the hospital patient was way too sick to be using that for any pulling. So, we took it off. We learned from the kids to take off any medical equipment as much as possible. It is in the way of what is important at this time—the love and connection between the kids and whoever is sick. The other thing that is dark is what you might think is his hair. I have learned never say what the things in the picture are. Rather, I point and ask what that thing is here or there. She said, "He is so sick, he had radiation, he had chemotherapy, all his hair fell out, and he has a headache all the time." So, that is not hair; that is pain. Kids often draw the dark places in a body to be where they perceive pain. So, just point and ask. What is odd about this drawing are his feet. They are swollen. She said, "they are swollen like balloons. I am afraid they are going to blow up like balloons." Eleanor got to explaining about how thin balloons are, how we have three layers of skin, how she can put pillows underneath and help the fluid flow away from his feet. Then, she drew herself bringing tea to dad. But, she had no hands. When we asked if she brought tea to her dad and if she helped her mom, she told us that she did not and that the door stays closed all the time and that she doesn’t know what they are doing in there, but she hardly gets to see him. When we took the drawing to her mom and asked her about it, she said that her husband has changed so much physically that she wanted to protect the children from how he looks. I have learned through the years that protection, the ’p’ word, is like a swear word. The question is who is protecting whom? For children, protection always feels like exclusion; that they are being left out. If you remember being a kid, there is no worse feeling than being left out. Kids would rather see their parents dying a grotesque death than to be shut out. So, we have learned to let them in.

She drew this a month or two later when we were told that her father was dying eminently, but Laurie had not been told because no one knew how to tell an 8-year-old child at that time that her father was dying. So, we did not know how to do it. I did not know what to do. She came to my office that day, plopped down on the floor very happily, and drew this picture. I said, "Wow. You must feel so much love for your dad to draw that many hearts." She was beaming, she was so happy. But, then I asked her, "But, why is he so small?" Why questions are bad questions because kids feel like they have to have make-up a reason, or just feel badly that they don’t have a reason. Laurie just got mad. She stood up, put her hands on her hips and said, "Because he’s dying, stupid!" And, so the answer to the question, should the children know, is that they already know. They always know. They have very good barometers for the increased phone calls, the temperature in the family, how things are changing, but they don’t know what that means. Her questions were not about why does daddy have to die, but "should I still go to school, do I go to soccer practice, do I have to move to New Jersey and live with Grandma? I don’t want to do that." Those were concrete things that were answerable. That is what the kid needs—permission to ask these questions.

This was Barry, her brother, who turned 13 on this day. He asked me to draw him while he was writing a poem. He was supposed to have his Bahmitzvah on his 13^th birthday, but our nursing staff was concerned that his father would not live that long. We were an all-catholic staff and we knew nothing about Judaism. We went to the Rabbi and asked if we could hurry up this thing because he needs to be with his dad on his Bahmitzvah. So he had his BarMitzvah when he was twelve and a half. On the day that he should have had his BarMitzvah he was writing this poem:

Now that I’ve been through this tragic incident, it feels a lot different than before,

Then, I felt like it would never happen to me. I guess, unfortunately, that I was wrong.

I feel now that I want another chance to be with him—one more chance to say goodbye. Now, since he is gone, my family thinks totally different. I miss my father telling me to go to bed. For once in my life, I would love for him to have to yell at me. I really don’t know why bad things have to happen to good people.

You can hear Rabbi Kushner’s book in there. He had read it and tried to sort out why the bad things happen to bad people—the same question kids are dealing with right now.

He also wrote this poem. When the kids first came to meet with me, we asked the kids to bring something. The kids asked for a group to meet with each other because they were the only ones in their school, the only ones in their neighborhood, the only ones in their church or synagogue that had a parent die. When they accidentally met each other at a hospice cocktail party, they met each other and found out that they weren’t the only ones who had a parent that had died. They found a common bond. Twenty years ago, that was how the first grief-group started for kids. They asked to see someone else so that they could see that it really wasn’t their fault. Otherwise, if you are the only one, it is your fault. To come to such a group is a pretty nerve racking experience. So, we asked each person to bring with them something that their loved one had given them. So, Barry, instead of just bringing in a doll or something, brought in a baseball bat, a baseball glove, the ball, and a football—just a huge amount of stuff. He walked in, slammed it down and said, "My Dad was my coach, and he is missing in every sport." And so, we did show-and-tell, we still do show-and-tell in bereavement groups with eighty-year-olds. It is one of the greatest things about school. The kids could talk because they had these objects in their hands. They had this medium--they could go between themselves and their pain. And it is not enough to talk. When I wrote this book, Part of Me Died, Too, I had to go find these kids, ten years later, fifteen years later, and ask them what they remembered. They remembered none of the words. But, they remembered the objects, the drawings, the rituals, and they remembered the messages attached to each of those. That is why you pipe cleaners here, today, so that you can make something meaningful of whatever happens today. That is how we retain information.

Instead of just talking, we also wrote and did drawings and poems.

My father has been my baseball coach for six years, that is, six great years. I was great having him for my coach. He would always warm up the pitcher before the game started. Every time I was up to bat he would give me hand signals from third base on what I should do. Now when I look down at third base and see he is not there to give me hand signals, I say to myself before the pitch, "this one is for you, Dad."

He is taking that pain and turning it into a motivation to do better. He is now thirty-years-old and a hospice worker on Long Island.

Let me show you a couple of the other authors, because one of the things our culture does that is a great disservice to grief is that it makes grief quiet. I talked to high school sophomores in my area and I asked them how they felt when they came out of a funeral. They all grabbed their throats and said they feel like they were choking it down. One of the sophomores told me, afterward, "and then you’re supposed to go and eat afterward! What is that?" Shove it down some more.

If you went to a funeral anywhere else in the world than North America you would hear what grief really sounds like, which is loud. If you went to a funeral in India you would hear a hundred and fifty people doing this (high-pitched screaming and shaking of rattles). I feel better. They get it out, at the moment and at the time. I have kids who need to scream, but they aren’t allowed to scream at the funeral. So, we need to find some ways for them to scream.

Three things will happen to you in this culture if you scream: You will be segregated, you will be evaluated, and you will be medicated. Right? And you are taking grief and changing a normal healing process and your turning it into a problem, and addiction, all the things we will see if we don’t give kids another way to grieve. So, this is one of our ways. It is a scream box—just a shoebox with a paper towel tube in it. You just open it up and crush paper and get mad. I help the kids get mad. I mean, doesn’t it stink that your dad is dead? (Hitting the scream box) Do you still have to go and learn when Jamestown was settled? I mean, does that make any sense? Boom. Boom. And you just shove it. And, when you are done, you feel it. And this becomes something like the muffler on your car. If someone is upset and wants to scream, the last thing you do is cover their mouth or muffle them. I hope you never tell anyone to hit pillows. It doesn’t work. When you are mad you want to hit something that goes, smack! This is a tube that connects to your station tube—it creates an echo chamber. (Screaming into the tube) Now, that is with the mike, but it is still pretty good. Classes I go to where a kid dies, I’ll come back a couple of months later and there will be 25 of these on the windowsill. Everyone has his or her own, the teacher has his. This is how they adorn the grief of having one of them missing.

A variation on that is that is the "damnit doll." This is a substitute for pillows smashing. I asked the high school sophomores how many of them were putting their fists through walls. Last year, it was 40%, this year it was 60% of high school sophomores that had smashed their hands into a wall. I told them that they all had to quit that because they would all be in the hand clinic with me. I said to them, "you all need damnit dolls." I feel endorsed by the churches of America to use these because this is the only place that you actually can buy one—that is at church bazaars. Has anyone ever seen theses? They sell them at church bazaar. Look at them. They come with a little poem, and it goes like this:

When you want to kick the desk or throw the phone and shout,

Here’s a little damnit doll you cannot do without.

Just grasp it firmly by the legs, and find a place to slam it,

And as you whack it’s stuffing out, yell, "damnit, damnit, damnit!"

This works because it is just tube socks with pillows stuffing, but it also has two handfuls of dried beans—something with smack so that the anger has a chance to come out. Because, what we don’t remember about grief or would not like to acknowledge in this culture is that it takes a long time. It takes years to incorporate this into a life. For my kids, we never talk about resolution. We maybe talk about reconciliation, but mostly talked about flying with both wings. On the one side, your mom will always be dead, and you always are going to be missing her. On the other hand, you are a kid and your job is to be alive, and to be here, and to do the best you can do until you are with her again. You have got to fly with both wings. If you try to ignore one or the other, you are going to go straight down.

Lynne Hughes: My name is Lynne Hughes, and I am going to take off where Virginia left off because she made a great case for the fact that children do grieve—they are often the forgotten griever. It is very important that we don’t forget them. What I do is run a bereavement camp for kids, it is called, "Camp Comfort." We are located just outside of Richmond and we started three years ago. We are the only "stand-alone" bereavement camp that I am aware of, in the country—meaning that there are other ones throughout the country, but they are all affiliated with a hospice or a bereavement center. As a result, they may offer one or two camps a year, but that is not their primary focus as opposed to that is all we do, that is all we are focused for.

We started off as a planning committee, meeting in 1998, interviewing these other camps throughout the country, figuring out how they do it, what they do, what are the number of kids, what is the ratio of kids to adults, what type of activity they do. We planned for a year. I actually went and visited some camps and took notes—fast and furiously. I am a firm believer of when you are doing the right thing--and my personal belief that if you are doing the thing that God wants you to be doing--the door will get opened and mountains will get moved. People kept on literally coming into my path and I’d want them on board (even though I might not know their skills—they each had one or two special things to offer). It just kind of grew from there. It was very much a faith walk of "if you build it, they will come." We just knew that there were so few researchers out there for grieving children.

So, we planned it in ’98, and we picked two dates—May and August of 1999—and ironically, I found out a week later that I was pregnant and that I was due the first week of the first camp. So, it was very interesting process to go through of giving birth to two things simultaneously. Our first camp was in May of ’99, and I had the baby three days after the first day. I made it through it. We had 35 kids.

What we do is that we accept 30 kids (we may go a little over), and we do not charge anything for the camps. Everybody who comes into the camp has an older mentor of the same sex. The big buddy mentors sleep next to the kids, eat with the kids, and do all the activities with them for the weekend. It is really a wonderful thing to watch because a lot of these kids are attention-starved because the surviving parent or guardian is so preoccupied with their own grief. So, they get there and they have this dedicated adult and they kind of "turbo-bond." It really is a neat relationship. A lot of them keep in touch outside the camp. So, we take up to thirty kids, we do a mixture of small grief groups (which we call "healing circles") and these are led by grief therapist volunteers. We brake them down by age and we used to brake them down by types of loss, but then we found out that it doesn’t matter if you put the traumatics, or the suicides or the cancer losses together because the kids really don’t care. It’s the emotions that they connect with. And, similar age helps because they are sort of speaking the same language. We brake them down by age and each one has a theme associated with them, whether they are telling a story and they bring a picture of their loved one that they pass around, or different ones deal with emotions, with feelings, and moving forward.

We do have an arts and crafts project affiliated with each one. Some kids are really verbal and some kids are better through the art expression. They will go through their talking time and their art time and they will come back to the human circle and talk about what art project they made and what it meant to them. Their big buddies are seated behind them and are there to support them. Some of the big buddies have experienced personal loss and some have not. I think it is important for kids to see those buddies who have had a personal loss are still walking, talking and surviving, and still leading a happy life despite their loss. But, I think it is just as important that the kids see that adults that have not experienced personal loss still want to help them through it.

We have no criteria for how recent the loss is. We try to make them wait at least three months before they come to camp so that they have some perspective on how their daily life has changed and so they are not completely numb. We do camps for 7-12 year-olds, and then we do camps for 13-17 year-olds, and then we give reunion camps as well. So, the first year we did two camps, the second year we did four camps with a team camp and the reunion camp as well, this past year we did five camps and we added a weeklong reunion camp.

It is our goal to buy land and build buildings and to be the first full-time bereavement camp in the country. And, to offer 8 one week camps and then weekend sessions during the off season. This is the limit we have right now by having to use other land—we have to go spring to early summer, and then late fall while the weather is still nice.

We also do a combination of mindless, typical camp activities—they swim, they play silly games, we do outward bound where they go out into the woods and do rope courses and trust falls and do different things in healing circles and trust activities. We have a bon-fire with sing-a-longs and s’mores, and then at the end of the week, and then at the end of the week, a really powerful thing we do is have a memorial service. The kids are invited to sing songs, write a poem, and do whatever it is they want to do in memory of their loved one for the service.

The service is held on the last day of the camp—Sunday—and the parents and the guardians, at that point, are invited to come back to the audience. It is so powerful—we never really know what it is going to look like, but we know that it is going to be really moving. Typically, the parents will bring their kid to camp and say that the kid won’t talk about the person who died. We hate to tell them that, 99% of the time, these are the kids that tend to, as soon as they get in this environment, blossom and grow and are the ones who don’t stop talking. They also are the ones singing the solo at the memorial service and the parents say that they had no idea. So, the memorial service is very powerful, and it is nice to tie-in the parents and the guardians. The kids have also written a message to their loved ones on helium balloons earlier in the day, and we go out with the parents and the guardians, from the big group, and we do the "balloon release."