First of all, the answer to the question posed in the previous post’s poll is Shit. Feels a little anti-climactic now, no? Although I assure you, at the time when I first spoke it aloud, the word was volcanic. As the most forbidden term in my universe, lettin’ her rip like that tore a hole in the time/space continuum of my life that has never entirely closed again.
Such is the power of language.
And now, for a dramatic subject change (place hands firmly on each side and hold onto heads please) I ran across an interesting article after Googling the search term “do children know when they’re going to die.” The title of the piece is When A Child Is Dying and it’s written by a couple of M.D.’s working in children’s palliative care over at the Children’s Hospital of Wisconsin.
As one would expect with this topic, it’s a powerful, heartbreaking, and inspiring article, discussing both the keen awareness children tend to have of what’s really going on, as well as the higher stakes and corresponding desperation that so often comes to bear on adult decision making in these situations. Obviously, the two doctors who wrote the article are strong advocates for delivering better palliative care in cases where children are at end-stage, but evidently it can be an uphill battle as quality-of-life issues for the child vie with the powerful parental instinct to fight for life.
Read it if you dare. It highlights yet another area where 1) our collective commitment to denial about death can wreak some serious havoc if we don’t get out in front of it early, and 2) the huge and beautiful difference it can make for those we love most if we only screw up our courage and face it anyway.
One of the most helpful insights I gained while working with hospice had to do with a rather large, unexamined assumption I’d been laboring under most of my life; namely, that dying = something going wrong. (Not surprising considering that most of our medical language reinforces the perspective. Heart failure. Organ collapse. Failure to thrive. Losing the battle. Disease is the enemy. War on cancer, etc.)
However, after hanging around with the dying for a while and studying the dynamics first hand, a new and startling perspective presented itself and knocked my world off-tilt. I’m not entirely sure how it happened but as I watched one person after another…one circle of loved ones after another…migrate across the sweeping terrain of the dying season, the basic, cyclical nature of life began to show itself more clearly, and as it did the word “wrong” was gradually replaced with something else.
What was happening to these people wasn’t wrong so much as it was just time. Their time. Like someday it will be my time. And your time. And everyone’s time. (And every thing’s time for that matter. Nothing lasts forever in a physical world.) And as this new awareness grew on me I turned to the obvious, bewildering question: why in the world had I been believing, however subconsciously, that people shouldn’t die? Or that there was something wrong happening when they did? Where did that expectation come from anyway?
I quickly realized it’s because of how it feels–because of the huge losses involved and the devastating hole it tends to leave behind. Nine times out of ten, dying is a seriously hard physiological process to go through, and trying to recover after losing someone you love isn’t much better. The whole thing feels bad. Really bad. And because nobody wants to feel that way, it’s easy to mistake the badness of the feeling for something going wrong.
I admit, it sounds really strange to say that Yes, absolutely, dying is horrible and undignified and primal and full of suffering and loss and destruction…but hey! At least nothing’s going wrong.
It sounds insane and yet it’s true. Life is so weird sometimes.
But even accepting all that, it feels most wrong when a child dies. It just does. That magnitude of loss violates every screaming, primal, dangerous, protective, cornered instinct lacing our genes and honestly, I’m not sure if a rational perspective has any value at that point. Does it? I’m pretty sure I’d rip the throat out of anyone who tried to tell me nothing was going wrong if it was my child dying.
And yet…and yet. That doesn’t mean it’s not still true. Hmmm. Y’know, I think ultimately…if I was going through the loss of a child myself…I would rather be surrounded by people who accepted the inevitability of dying, were no longer afraid of it, and had learned how to navigate it gracefully. It seems like they’d be the ones most likely to offer the compassion, strength, and acceptance needed, rather than feeling conflicted, not knowing what to do, and turning their faces away in horror or outrage instead.
I guess that’s why stories like the one in When A Child Is Dying move me the way they do. I LOVE that these people are out there; the doctors and nurses and volunteers and social workers and chaplains and counselors and all the other staff working in palliative and hospice care, all trying to oh-so-gingerly raise our awareness in order to try and lift some of our burden. I’m grateful that they continue to wade willingly and skillfully into the darker waters of our lives every day.
They know that dying can be something better than most people currently believe.
copyright Dia Osborn 2012
The Odd and Unmentionable 
Dia,
Another great post…thanks!
Cal
dia
sorted my account so I can post replies
I have never nursed a dying child but I have nursed a teenager who had cerebral palsy so was effective viewed as a child by his family
its a whole seperate post in itself eh
Ah…so it was your account, not mine? Good to know, thanks.
I never cared for a child in hospice either, but I think I would have loved it in spite of the special challenges. I sure would love to sit over tea some day and trade stories!
Great post. It is so sad when a child get cancer (or other terminal illness). I really liked the book Only Spring: On Mourning the Loss of My Son by Gordon Livingston. He is an MD whose 6 year old son died of cancer.
I thought about you while I was writing this post…even though your son was grown, it’s hard to imagine that making much difference. Sounds like a great book…Amazon ho!
We bereaved parents debate that: which would be tougher, a sudden death, like my son, or a long drawn out illness. Some say having the knowledge before hand allows you to “prepare”, “say good bye” etc– but are they ever prepared, and isn’t there always the hope holding out to the end even for a miracle? To me it would be so sad to watch my child s uffer. On the other hand a sudden death can knock the wind out of you.
I’ve actually thought a lot about that, too–the difference it makes in bereavement between sudden and wasting deaths. For a while I thought of it more as a distribution of the emotional workload kind of thing–with a swift death, all of the work takes place afterwards, by the survivors, while, with a lingering illness, more of the work is done beforehand, together. With a swift death everyone is spared the burden of witnessing the additional suffering that goes with a long, drawn out process, and with a lingering illness, there’s an opportunity for closure and good-byes that isn’t usually available otherwise.
There’s a unique gift either way, which I find encouraging personally. But in the end I suspect it mostly just comes down to the people involved and what kind of skills they’re able to develop for grieving, reorienting, and rebuilding. I love what you did…immersing in the story of his life as a way of navigating the wasteland. What does it feel like now that the book is published? I’ve been curious to know how the end of the project has affected you (if I’m not being too nosy!)
Good question. I will blog about it sometime, and ponder on it some more. But briefly it’s a big burden off my shoulders. I vowed to write the story of his life as an honor and tribute to my son, and to help family, and David’s friends remember him, and get to know him better. I even felt an urgency to write it as I was sick for awhile, and I thought “I”m the only one who knows thisi stuff, so what if I die before it’s published?” I even asked a writer friend to finish the book if I died. The “burden” being off my shoulders, only means that the writing took two years, and I wanted to finish it. I’m very proud of the book and have gotten such good feedback from his friends (who especially liked the kayaking adventure and humorous events in David’s life) and from my friends who related to the last part of the book about my grief journey and journey to healing. So it has two audiences. I was so pleased when my daughter (David’s sister) was so moved by the book; she felt David came to life as I put the first part of the book in David’s voice. While I wrote it I felt so close to him, as if I was “channeling” David and he helped me with what to say. Now that it’s out, I want people to read it to be inspired by David’s life, and perhaps give hope to those who have suffered the death of a child or other loved one. So I’m spending a lot of time marketing.
Dia, as always, your posts evoke the deepest feelings and take me to the scariest places.
“What was happening to these people wasn’t wrong so much as it was just time. Their time. Like someday it will be my time. And your time.” Reading those sentences illicited a sharp tickle in my heart, the start of a feeling that I used to encounter as a child sometimes at night when I would ponder life & death. The feeling is akin to the flutter that happens when you stand at the top of a very tall building or a precipice and look over the edge. It starts in the heart and bolts through to your toes like lightening. I don’t know why…why that happens OR why those particular sentences prompted the feeling. I think it is the utter finality that comes with death and my absolute inability to accept finality.
Sorry about that! I admit, when I wrote those particular lines I KNEW I was wandering into taboo territory but I couldn’t help myself. It’s just so TRUE. Although y’know, it’s funny. I was having a conversation with a friend this weekend about the perennial pursuit of immortality throughout the history of civilization (some of our best minds have always been working on that one) and we both felt the same way…even if immortality was possible we would NOT want it. No way, no how. The idea of living FOREVER was, instinctively, totally repulsive to both of us. Strange, no?
What about you? If somebody presented you with a red pill of immortality or a blue pill of normal life span, which would you take?
No, no, don’t you be apologizing for finding the funny bone in my heart. It is only the very best writing, about the very most important topics that can accomplish such a feat. And, BTW, the post was poignant in another way, as I had just recently read some posts on the Caring Bridges website for families of children dealing with cancer. The grandson of one of my book club ladies is going through that unfortunate process.
Immortality? Great topic for another post! Just like I wouldn’t want to know beforehand how and when I will die, I would also not care to live forever…I don’t think. It would upset the whole magical circle of life, wouldn’t it? Immortality presents logistical problems, if nothing else. If NO ONE, NO THING, died? Or if just a handful of select people were immortal? That’s another question, because what fun is it if all your friends, family, kids,grandkids, are gone and you’re still here, watching the world roll along in new and incomprehensible ways? This is a great topic. I think you should expand upon it.
Never ask my opinion, cuz surely you’ll get it and more! 😉
And once again…you inspired the next post, my friend. Damn, your insights are great.
What’s wrong with children dying before parents?
Beautiful video. Thanks for being their advocate. God only knows they need them.
Has anyone ever donated to these organizations? Do you really get letters from the kids in Africa and such. Are they real? What all happens when you donate monthly to them? Is it legit? Please tell me your experiences or your opinion from knowledge about these groups. Thanks!. I’d love to do it but I don’t want to be duped! I’d love to hear from someone who really has experience in this. :-).
I haven’t donated myself, but here’s a link to a website that monitors charities in the U.S. You could look them up and see if one of them would work for you:
http://www.charitynavigator.org/
Good luck!
Dia, I read about a writing contest for women, through Pixie-Chicks (women’s writing group, on Facebook, Jane Freundship, a local woman). Anyway, the topic is on “death” and the maximum word count is 5000. The essay is due by June 1st. You might google Pixie-Chicks or facebook it for more information if you are interested.
I’ll check it out! I’ll have to think what to write though…I usually write about dying, not death. Hmmm…the juices are already flowing. 🙂 Thanks for the heads-up!
I would think dying might qualify for the topic. Perhaps they will have more description about what they want. I’m thinking of doing itoo.
I scouted around on their website and Facebook page and this is all I’ve found so far:
http://askancepublishing.wordpress.com/competition/
It’s a competition posted by another small publishing house in England that posted a link for it on Pixie Chick’s Facebook page. But the topic is health…although they seem to be looking for a REALLY broad range, including terminal care and just about everything. Is this the one you saw or did I stumble on something completely different?! That would be great if you did it, too!
I’ll try to get you a better lilnk; I think this was more specific than health. are you on FB?
Thanks! I really appreciate it…this other competition costs 10 euros which is closer to 15 with the exchange rate. (Although I found an old story I wrote in my early hospice years that might work. This other press solicits unusual approaches, and this story is definitely that.)
Where Facebook is concerned, I log in through my husband’s (neglected) page. I’m still too conflicted on the privacy issues to stand up and have an account of my own. Sneaking is infinitely preferable. 🙂