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This next book in our series of children's books that deal with grief has a famous author, which will often add to the appeal in buying a book. Perhaps from the media's input, I had also already heard of this book before actually getting it from the library.

The author, Maria Shriver, points out on the back that this book came from actual discussions with her 6 year old, at the time of the daughter's great-grandmother's death. I think knowing that perspective helps in the review as well, since the previous books Tear Soup and When Someone Dies was written by a hospice worker and grief counselor, respectively.

What's Heaven? is written by Maria Shriver and illustrated by Sandra Speidel. Published by Golden Books in 1999, the age listed for reading 4-8.

Although the title would imply a book all about Heaven there are definitely other topics covered.  The plot line follows Kate who comes home to find her mother sad and news that her great-grandmother has "died and gone to Heaven".  This prompts not questions about death or what "died" means but questions about what Heaven is.  The concepts specifically in question are:  Where Heaven is?,  Are animals there? and How do you get there?  I think these are questions I myself would like to know!

There is also discussion about what a funeral is and thanks to cousin Bobby, questions about the actual casket. Here's an example of a conversation Kate has with her mom: "Bobby told me we are going to a funeral where we are going to bury Great-grandma in a box. Why are we going to do that? Will it hurt Great-grandma? How will she breathe in the box? What if she wants to get out?"

As is typical of little ones, there are many more questions than answers in the book.  As parents have learned, it's more about the concept we are sharing than the specifics of each question.  This book is similar, the general message is one of hope; that after death there is a distant, safe place where all the best parts of someone goes... that it's okay to be sad and it won't last forever and that by remembering our loved ones they remain alive in us.

The illustrations are done in pastels, with a more vibrant feel than some of the grief books I've seen.  The pastel's also allow for a dream like or memory like quality, as sharp details are left out.  There are a lot of words on each page, and no paragraphs, perhaps emulating the way children can move from one topic to another in stream-less fashion.  Each page does have one phrase that is doubled in font size, I suppose then if just browsing the book you could pick up on the highlights.

If you have a child with some of these specific questions, it would be a great book! What's challenging in these types of personal stories, is that your family may not agree with all of the concepts presented.  For instance if you don't want to teach your child, "when your life is finished here on earth, God sends angels down to take you up to Heaven to be with him" Then you'd have to either skip the page or do some other teaching on what your family concept is.

In comparison with the other books reviewed thus far, this book is by far the most specific in terms of one family's beliefs and/or opinions.  And rightly so, as the author makes no presumption of being an expert, but simply using her own experience to share with others...

Stay tuned, we have a few more to review!

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As mentioned in the first in this series on children's literature dealing with grief, there is an abundance of material out there to recommend to families with children dealing with grief.  In fact, it's often overwhelming with so many choices.  Hopefully this random sample from my local library will, if nothing else, illustrate the wide variety of books out there.

Often until you actually see inside the book yourself, it's hard to know which book is the right one. In fact, if you went on just book lists, the book I'm reviewing today is by far on more lists than any other books I'm reviewing, making me assume it is very popular. Yet without reading it, as you may see, I wouldn't have discovered it's unique style, different than Tear Soup, or even The Goodbye Boat reviewed in an earlier post.

When Someone Dies is written by Sharon Greenlee and illustrated by Bill Drath. Published in 1992 by Peachtree publishers it is written for a reader aged 8-12.

The book is considered plot-less, with each page making more of a conversational statement in second person. This approach seems to lend itself to a normalizing of the emotions and issues surrounding grief.  The statements center around feeling sad and mad, but also about concepts of dreaming of your loved one, and worrying if other people around you will die too.  For example, here are some of the statements:

 "If the person who died was very important to you, you get to worrying that all the other important people might leave too.  I've never heard of it happening that way, but it's hard not to think about it"

"When people die, they can't come to your house anymore. You wonder what they'd look like now, and you do all you can to make a picture of them in your mind."

Towards the second half the author begins to task the reader to actually do some things such as finding someone to cry with and writing a letter to the person who died.

Besides normalizing grief with the second person speech, I noticed that the word "dies" is used 10 times out of  a total of 15 pages of statements.  I can't help but think even using the word is a way to normalize the experience. No metaphors in this book, death is definitely the main character.

The illustrations use a washed out almost dull tone, adding to the mellow nature of the book. One thing I found interesting is that all of the scenes are out doors in nature and the people all Caucasian, which doesn't do much to normalize to a wide audience.

I think for certain children, this type of writing style is what is needed. Due to this books popularity on many of the lists out there, it's definitely good to be familiar with it!

 Stay tuned again for more books coming up...

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"I came to learn what is means as a poet to be the person who can sit with those profound, profound, essential human experiences, and to let them happen, and to not fight them, and learn from them.   

I never would have thought before that it was a privilege for someone to let you be intimate with them as they move towards dying.   

But it was.  And I think I understood that because I was having and raising these little babies." 

Neonatology 

"[...] birth is like jazz,

from silence and blood, silence
then everything,  
jazz."

and then Autumn Passage. 

"On suffering, which is real.

On the mouth that never closes,
the air that dries the mouth.
On the miraculous dying body,   
its greens and purples. [...]" 

Crave Radiance: New and Selected Poems 1990-2010 Publisher: Graywolf Press Date: 2010 Language: English Available at: amazon.com graywolfpress.org

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If you look at any bibliography of childhood grief books, it is likely to be quiet extensive! Take for instance the bibliography on the Child Grief Education Association website, here.  The good news is that there is no shortage of literature available.

My question is, though, with so many choices- which ones are the best? This answer probably has much to do with the child's age, the questions they are asking and simply the child's personal preferences in books.  A simple title of a book won't give any insight into the intricacies of the book, thus we must rely on word of mouth or websites such as BarrHarris.org,  Childlife.org or the many other hundreds of grief websites that give a synopsis of the books. But even this doesn't give a clear understanding of what the book is like.


The best option, would be to read them all ourselves. While a lofty goal that I have not yet achieved, this week I did the best I could; I went to my local library in rural America and checked out all the books I could find on childhood grief.  Hopefully the reviews of these books, with illustrations and story plot will give you a more thorough idea of some of the children's books out there.

For this first post I have chosen a book that has great appeal for adults as well as children. I would consider it a "cross-over" book, and may in fact be more of an adult book disguised as a children's book.

Tear Soup is written by Pat Schwiebert and Chuck Deklyen, Illustrated by Taylor Bills.  Published as a 3rd Rev. edition by Grief Watch in 2005, the age level listed for reading is age 4-8.

The main character is Grandy, who has suffered a 'great loss'. She spends the pages working on her tear soup, which serves as a marvelous symbol of grief.  The universal statements packed into the book are so subtle, sometimes it takes a moment to recognize them.  For example, "It seems that grief is never clean... To make matters worse, grief always takes longer to cook than anyone wants it to"

She deals with adding memories to the pot and even the profound concept of the time that memories seem to run out, and the emptiness felt then. There are interactions with neighbors and friends, as Grandy says, "They filled the air with words, but none of their words took the smell of tear soup away." Or when she comments that, "most people can tolerate only a cup of someone else's tear soup."

The book also approaches faith issues, as Grandy "demanded to know where God was when she was feeling so all alone."

As one might guess, Grandy works through her grief until she realizes it's time to eat something else instead of only tear soup.  The book ends with a nice summary of Grandy's journey, "I've learned that grief, like a pot of soup, changes the longer it simmers and the more things you put into it. I've learned that sometimes people say unkind things, but they really don't mean to hurt you...and most importantly, I've learned that there is something down deep within all of us ready to help us survive the things we think we can't survive."

This book has wonderful illustrations and while I am not sure a pre-school child would understand the significance of all the metaphors, it would certainly provide a starting point for topic discussions. It may also serve as a great recommendation for a family with an adult who has been resistant to dealing with their own grief... by innocently entering into the realm of a kid's book, they may be surprised to have issues raised within themselves.

Stay tuned over the next weeks for more reviews of children's literature and feel free to leave your own favorite children's books about grief in the comment section below.

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This is another installment to our Gallery Series. As a reminder, I generally pick something related to palliative medicine and then begin an online hunt to find art work and poetry with this word or phrase in the title.  Hopefully this becomes a stepping point for further thought and exploration.

All art work is copyrighted to the artist (often only a screen name is known), and listed in sequential order at the end. For further Gallery posts, links are provided for convenience at the bottom.

Today's Gallery theme is "Quality of Life", so picked secondary to this phrase's essential part in the definition of palliative care.

The definition of QOL from thefreedictionary.com:
Quality of life (n): Your personal satisfaction (or dissatisfaction) with the cultural or intellectual conditions under which you live (as distinct from material comfort).


"Quality of Life" copyright Harley.


Pain roils within me, without
Despair assails me, and doubt
What is the use of all this striving for survival?
What is the quality of this persistent life?
A Fleshy form twisted into tangled knots
And mind cramped with bitter regret
The sun shines, but darkness covers me with futility
Soul stripped to the bone
Thousand-yard stare fixed on far horizon
Sane men call me mad




"Quality Of Life - Poem" (Aug. 2000) by A.K. Whitehead


I have lived a life-- or two,
depending where the line is drawn.
What has been accomplished
is, as if it were, undone,
and what remains undone 
is the heel that kicks the spur. 
Life, time, accomplishment
define each other...
and their exclusions
rising like pale mountain ranges
whose heights perceptibly increase
with their proximity

Finally a poem read by the author herself.  This is "Quality of Life" by poet Harryette Mullen. It is a part of her 5th collection, the book entitled Sleeping with the Dictionary (2002)



Art work displayed:
"Quality of Life" (2010) Sandy Brooke
"Quality of Life" (2007) spotandbones
"Quality of Life Painting" (2007) Patrick Sheridan

Past gallery posts: "Itch", "Dysphoria","Last Breath", "Pain", "Afterlife", "Restless","Stillness" and "Grief"

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I seem to find palliative care topics everywhere. Most recently it was while watching basketball. Well, while my husband was watching basketball. The tournament he was watching on December 7th was the Jimmy V Basketball Classic. During the game they advertised Jimmy V Week. So it got me wondering, who was Jimmy V?

Jimmy V (or Jimmy Valvano) was a famous college basketball coach and sports broadcaster, known for being the head coach at North Carolina State University when they one the 1983 NCAA Basketball Tournament. (He is especially known for running around after that game, looking for someone to hug.) In 1992, he was diagnosed with bone cancer.

After his diagnosis he co-founded the V Foundation for Cancer Research with ESPN. Since it was founded in 1993, the V Foundation has raised more than $100 million for their cause.

Below is a famous ESPY Awards speech given by Valvano in 1993 (the very first ESPY awards) while receiving the Arthur Ashe Courage and Humanitarian Award. This speech was given just 8 weeks before he died. It was during this speech that Valvano announced the formation of the V Foundation. He ends this speech with, "Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever. I thank you and God bless you all."




Sports stories are not my usual topic but when I saw the speech he gave, I knew it was a Pallimed Arts story. You could tell when he walked up onto the stage that he was not really doing well. But when he spoke, he had so much energy and humor that I found myself forgetting about the cancer.

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I found this story in a recent CNN article. Five year old Aidan Reed was diagnosed with leukemia in September of this year. Aidan immediately began treatment. With a new baby at home (born 12 days after Aidan's diagnosis), his father had to take leave from work to help out. Financially, things quickly got bad for Aidan's family and they even discussed having to sell there house.

Aidan loves to draw and he loves to draw monsters. (To the right is Gillman, one of Aidan's favorite monsters to draw.) After his aunt received some of his drawings, she had an idea of how to financially assist Aidan's family. She set up an Etsy account called Aidan's Monsters and began selling Aidan's art. For those of you not familiar, Etsy (one of my favorite websites) is an online forum for people to sell there homemade art, clothes, jewelry etc. Aidan's monsters were so popular that the family made $83,000 in just a few weeks. You can see more of Aidan's art on his blog.

A few things I found interesting about this story. First is the very clever use of Etsy for fundraising (again, one of my favorite websites). Aidan's aunt is only selling the pictures (prints) for $12 each and managed to sell around 7000.

Another thing was the obvious parallels people were making with Aidan drawing monsters while fighting a "monster" himself. I even read somewhere that the monsters were some kind of subconscious manifestation of his fight. Really? Can't he just be a five year old boy who really likes to draw monsters. Wouldn't that be a much more likely explanation.

Reading this story also introduced me to a series I hadn't read on CNN.com, entitled Empowered Patient. It was started by Elizabeth Cohen after her newborn daughter accidentally got an unnecessary spinal tap. She writes on different topics like how to get the most out of your doctors visit and how to talk to children about illness.

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Humans have been placing their deceased loved ones in coffins for centuries.  The word "coffin" is ultimately derived from the Greek word ko-pi-na ,(basket) which as a word appeared in manuscripts as far back as 1300 B.C.!

In the US, the design has stayed relatively the same over the years, except for that brief time in the 1800's that people were afraid of being buried alive and a crop of "safety coffins" popped up.

The same is not true in Ghana, Africa, where for the last 60 years the Ga tribe in the coastal region of Ghana have celebrated an individual's life by designing custom coffins.

When I say custom coffin I do not mean painting a traditional coffin in personalized colors or designs as the company Colorful Coffins in the UK, or Happy Coffins in Singapore does.  Although these coffins are beautiful and individualized, they still hold to the traditional Coffin form.

In Ghana, however, "custom" implies bold and different, as a handful of wood workers have created a unique craft, actually molding the wood into individual objects that represent the deceased's life.  This can range from a soda bottle, seashell, fish, or shoe to represent an item the person sold for a living. Or the coffin may be a symbol of something loved, like a cigarette, Mercedes, airplane or ice cream bar.

The colorful coffins take weeks to months to prepare and can cost a year's salary for a Ghana resident. If the deceased hadn't planned ahead enough for the coffin to be ready- the body sometimes must be refrigerated the length of time it takes to finish.  Other delays can come with family disputes on what item should actually represent the deceased.

They say that more and more foreigners are purchasing these type of coffins, thought whether the purchase is purely for art or if this trend is beginning to catch on for actual burial practices is unknown. In case you are interested eShopAfrica actually offers the Ga coffins for purchase on-line and shipped to your door. (You may also enjoy seeing other ideas)

So, what do you think?  Does the idea of personalizing your coffin as the other two companies listed above do, appeal to you?  Do you think the idea of a over-sized wooden object as a coffin will catch on in the US?

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For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important -- and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.


So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go”– it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.




We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.


Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team.

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Ten years ago, Mark Hogancamp was attacked outside of a bar by 5 men. He was badly beaten and nearly died. It took 9 days for him to wake up after the attack and as a result Mark lost most of his memories and had severely impaired motor function. For his own therapy, physical as well as emotional, Mark created his own world which he calls Marwencol.

Marwencol is a fictional 1/6 scale WWII era Belgium town. The town's inhabitants are all dolls. Mark has created a doll for himself (named Hogie) and many of his family and friends are also represented. Mark poses the dolls in various scenes and then takes photos to tell the story. His storyline: Nazis, romance, torture, a time traveling witch (?).

His dolls and props are made to be very realistic. To enhance this effect, Mark actually places his characters in his model jeep and pulls it along side him when he takes a walk, giving them authentic wear and tear.

A local photographer saw Mark walking with his jeep and asked Mark what he was doing. Mark then shared his photographs. This discovery has led to a lot of publicity for Marwencol, including an art show in New York and now a documentary. Unfortunately the documentary is only playing in a select few cities nation wide and Kansas City is not one of them. But the trailer gives you a good feel (below).



So my question, after looking through some of the Marwencol photos is, when does this therapy cross the line and become pathological? The photos are wonderful. The scenes Mark puts together are amazingly life-like. But many of the scenes are about murder and torture. Hogie's wedding scene had dead Nazis hung up in the back ground. I just couldn't help but think that the Nazis are perhaps the 5 men who took his life away. Is he really just reliving his trauma over and over rather than adjusting his life to move past it? Making his make believe world exactly what he wants his real world to be?

On the other hand, maybe this is giving him the only life that he would be able to have. Maybe without it he wouldn't have a reason to go on after the terrible trauma he went through. If living in his own world is the only thing that is keeping him going, who am I to say that it's bad?

The Marwencol website gallery posts some of Mark's photos along with his captions to tell the stories. In the last postings, Hogie and his wife Anna (apparently in the image of his ex-wife) have been assassinated. The following is the collected captions of this most recent installment. I leave you with this because I think it says a lot.

"Meanwhile the SS are downstairs having drinks. They're celebrating that the King and Queen of Marwencol are dead. Now it's easy to take over the townspeople-they don't have leaders or anything. Then Anna and I stick our heads over the railing of the balcony. We look down at the Nazis down there. And they look up and they're floored. And Anna and I hug. And the Nazis realize that they can't kill me. They can't kill Anna or I because we're going to live forever. We're immortal. I won."

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One of the things I enjoy about "the arts" is the ability to continually stimulate more art. Art imitates life, life imitates art, and art even imitates art.

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My Life Without Me has been on my To See movie list for a long time. This weekend I finally had the opportunity.

Ann is 23 years old. She lives in a trailer in her mother's back yard with her husband and two young girls. She works nights cleaning the university. After having a fainting spell at home, she discovers that she has ovarian tumors that have spread to her stomach and liver. She is given about 2-3 months to live. One of the first things she does is sit and make a list of all the things she wants to do before she dies.

1. Tell my daughters I love them several times.
2. Find Don a new wife who the girls like.
3. Record birthday messages for the girls for every year until they're 18.
4. Go to Whalebay Beach together and have a big picnic.
5. Smoke and drink as much as I want.
6. Say what I'm thinking.
7. Make love with other men to see what it's like.
8. Make someone fall in love with me.
9. Go and see Dad in Jail.
10. Get false nails. And do something with my hair.

She never tells anyone about her diagnosis. She says she does this as a gift for her husband and children as she doesn't want their last memories of her to be doctor appointments and hospitals. For the same reason she refuses any treatments or further tests. She works to complete her list, while making tapes for all of her loved ones to explain her choices and offer some final words.

She has a unique relationship with her doctor, Dr. Thompson. When he is telling her the bad news about her cancer, he sits beside her in a waiting room chair. He admits to her that he has to sit beside her because he can never look someone in the eye when he tells them they are going to die. In the end, Ann entrusts him with all of the tapes she made for her daughters as she knows he will remember to send them. He agrees to do this as long as Ann will continue to come and see him weekly, saying "Dying is not as easy as it looks, you know, but there's no need for you to have to feel terrible all the time."

The story is often run through Ann's inner monologues, what she is thinking about life and death as she does the grocery shopping, or walks down a busy street. Below is from the beginning of the movie as she is standing out in the rain.

"This is you. Eyes closed, out in the rain. You never thought you'd be doing something like this, you never saw yourself as, I don't know how you'd describe it... As like one of those people who like looking up at the moon, who spend hours gazing at the waves or the sunset or... I guess you know the kind of people I'm talking about. Maybe you don't. Anyway, you kind of like being like this, fighting the cold, feeling the water seep through your shirt and getting through your skin. And the feel of the ground growing soft beneath your feet. And the smell. And the sound of the rain hitting the leaves. All the things they talked about in the books you haven't read. This is you, who would have guessed it? You."

At then end the film, Ann lies in bed watching her neighbor (also named Ann) joyfully interact with her husband and children as the neighbor helps them make dinner. She tells them she is bed suffering from a bad case of anemia.

"You pray that this will be your life without you. You pray that the girls will love this woman who has the same name as you and that your husband will end up loving her too. And that they can live in the house next door and the girls can play dollhouses in the trailer and barely remember their mother who used to sleep during the day and take them on raft rides in bed. You pray that they will have moments of happiness so intense that all their problems will seem insignificant in comparison. You don't know who or what you're praying to but you pray. You don't even regret the life you're not going to have because by then you'll be dead and the dead don't feel anything. Not even regret."

This is a very sad but beautiful movie. (I will admit that I may have shed a couple tears at the end.) As Ann moves through her last days, you really get to feel you know her. It's an interesting perspective on dying young and poor. For what little she has, Ann accomplishes a lot in her last few days and weeks.

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Okay, I am probably late on this one since the book was published initially in 2007, but I have finally had a chance to read Pauline Chen's "Final Exam: A Surgeon's Reflections on Mortality" (Knopf, 2007; Vintage, 2008).


Dr.Chen is a surgeon who does both liver transplants and liver cancer surgery.  Most recently on faculty of UCLA department of surgery, she speaks nationally and writes a column for The New York Times.  


Her book, as the title implies is a autobiographical reflection of her experiences regarding death; beginning in medical school and moving through various training periods. We in palliative care, of course, deal with death frequently, thus reading this book you will surely find things that resonate with you as well as things that frustrate you. 

Her writing style is very engaging in its authenticity and narrative form. I read about patients that could easily have been people I have taken care of in my own training. The honest insight into her thoughts is refreshing. I enjoyed watching the transformation of her own avoidance of death, to a timid acceptance of death.

There are fundamental ideologies that she depicts that are very entrenched in our medical system as the following quotes illustrate:

"Along the way, then, we learn not only to avoid but also to define death as the result of errors, imperfect technique, and poor judgment. Death is no longer a natural event but a ritual gone awry.....By evading death, we miss one of the best opportunities for us to learn how "to doctor" because dealing with the dying allows us to nurture our best humanistic tendencies" (p95)