The Sun Magazine | Dawn And Mary

The Sun Magazine | Dawn And Mary

My writing group gathered for dinner here the other night. The "Sh*tty First Draft Writing Group" has five members, each of whom has suffered the death of a child, each of whom has a strong character and a love for the written word. We meet to encourage one other to write - even what Ann Lamott calls "sh*tty first drafts" - or ideas that are still in our minds, or scrawls on scraps of paper...any writing, in any form, is welcome.

You might think this is a depressing group, but you would be mistaken in that assumption. Yes, someone occasionally cries, but there is far more laughter, lively discussion and deep listening. We share ideas, whatever we are working on and books we have read; we drink wine. We share our stories. We hold space for each other, talk about what it is really like to walk this earth without our child, in this new landscape which is continually surprising us. We remember our children, and we hold those memories together, with love.

One of our members, Robin (author of the blog Grief & Gratitude), is a wonderful resource - she has read all kinds of books and essays, and frequently shares them with us. I love that quality in her; she's a bit like a personal shopper for good writing on interesting topics. This week, she shared an essay by the writer Brian Doyle - an essay about two of the women who died in the shooting at Sandy Hook Elementary (there is a link to article in The Sun Magazine at the top of this post).

The entire essay is brief and beautiful, but the last paragraph in particular struck a chord in me:

"The next time someone says the word hero to you, you say this: There once were two women. One was named Dawn, and the other was named Mary. They both had two daughters. They both loved to kneel down to care for small beings. They leapt from their chairs and ran right at the boy with the rifle, and if we ever forget their names, if we ever forget the wind in that hallway, if we ever forget what they did, if we ever forget that there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children, if we ever forget that all children are our children, then we are fools who have allowed memory to be murdered too, and what good are we then? What good are we then?"

As I prepare to attend the Ben Towne Foundation's annual BENefit this weekend, I look forward to gathering with parents, researchers, oncologists, hospital staff who treated Katie, family and friends who know firsthand that "there is something in us beyond sense and reason that snarls at death and runs roaring at it to defend children..."

I will be grateful to be in such company. We will hear stories of the progress made this year, progress in research and the treatment of cancer through T-Cell therapy at Seattle Children's Research Institute's Jensen Lab (the first patient is in remission!). I will join hands with others who are snarling at death - at cancer - and together, we will run roaring at it to defend our children - all children - because, in fact, they are all our children. 

If you'd like to learn more or find a way to get involved, follow the links to the Ben Towne Foundation and Jensen Lab.

September (GOLD) News

One of my favorite bloggers, Stephanie Nielson of "The NieNie Dialogues" and author of "Heaven is Here" has posted about Childhood Cancer. In that same posting, she has generously endorsed my book, "Because of Katie." Thank you, Stephanie!

Stephanie (also known by her readers as NieNie) survived an airplane crash which caused burns over more than 80% of her body. She writes a joyful, funny, sweet and real blog about her life as the mother of five children, spanning the years before and after the accident. The crash happened on the one-year anniversary of Katie's passing, so the date was very significant to me. Stephanie's journey - physical, emotional and spiritual - back from death continues to inspire me and thousands of others.

In case you didn't know, September is Pediatric Cancer Awareness Month (think "gold ribbon" when you see the pink one for breast cancer awareness). Many of our friends and acquaintances know about childhood cancer, and are committed to supporting research for better cures and treatments plans. They have started foundations, non-profit organizations, organized fundraisers, written articles, lobbied Congress, volunteered at camps and spoken freely about what they know - and what they wish they didn't know.

Clearly, it is neither wise nor acceptable to poison people - particularly sick people, especially growing children - in an attempt to cure them. But traditional chemotherapy and radiation are poison, and often lead to physical impairments like hearing loss, heart trouble and - if you can imagine the horror - secondary cancers. So a child who is cured in his youth may be diagnosed with a new cancer (not a relapse of the original disease, but an entirely new cancer) when he is older. After enduring the worst kind of sickness, this is cruel and unusual punishment.

We founded the Katie Gerstenberger Endowment for Cancer Research when Katie was in hospice care. She wanted us to direct the funds to cure cancers like the one she had (adrenocortical carcinoma). While childhood cancer is rare, adrenocortical carcinoma is extremely uncommon among that rarity, so we expanded the purpose of her endowment beyond that one form of the disease. To date, Katie's endowment is funded with nearly $193,000, and contributed $6,963 in this past year to the Ben Towne Center for Childhood Cancer Research at Seattle Children's Hospital. We are grateful to our family and friends who have helped to build this fund, as well as moved and relieved to see progress in the treatment and cure of cancer in these six short years since Katie passed away. With awareness, inspiration and financial support, it will come even faster - to children and adults who suffer from the many forms of cancer, and to those who suffer from the horrific, medieval torture-chamber-variety of treatments that have been all that is available to offer them, up until now.

To see the killer of my daughter (cancer) being brought to justice (wiped out) is profoundly gratifying to me mentally, emotionally and viscerally. If you are interested in joining this effort, please follow the links in the text in this posting to find out more.

To Dr. Michael Jensen and his colleagues at the Ben Towne Center for Childhood Cancer Research, to Carin and Jeff Towne (and everyone at the Ben Towne Foundation), to all who work tirelessly to make a better world for the sick, and for those who love them: you have my heartfelt thanks. And to Stephanie Nielson: thank you for caring about all of us who are touched by childhood cancer, and for using your blog to bless your readers!

When One Door Closes

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." - Helen Keller

Compassionate Action Starts with Seeing

"Compassionate action starts with seeing yourself 
when you start to make yourself right and 
when you start to make yourself wrong. 
At that point 
you could just contemplate the fact 
that there is a larger alternative 
to either of those, 
a more tender, 
shaky kind of place 
where you could live." - Pema Chödrön

Gratitude First

 "Happiness is not what makes us grateful. 
It is gratefulness that makes us happy."

- David Steindl-Rast, A Listening Heart

Light, Peace, Presence

 

"Enveloped in Your Light, may I be a beacon to those in search of Light. 

Sheltered in Your Peace, may I offer shelter to those in need of peace. 

Embraced by Your Presence, so may I be present to others." - Rabbi Rami Shapiro

Christmas Thoughts, Year 1

Christmas, 2005

To be honest, I have been a little baffled about why I am happy during this season. I thought that every day would be awful, full of longing and reminders of who and what is missing. The strange thing is that I am enjoying all of the small joys of Advent, and the days leading up to Christmas. I have been wondering why, and I can only think of a couple of things.

Last year at this time, we were suffering terribly. Katie was miserable in between rounds of chemo, and the last rounds were the worst. She needed medication around the clock to help her feel just "okay," and to control nausea, as well as 2-3 injections a day, and was only interested in watching TV and movies. We were all living in one small room at Ronald McDonald House, when she wasn't in the hospital: two queen-sized beds and a window-seat/bed, a table, two chairs, a TV/VCR/DVD player and (thank goodness) our own bathroom. David and I went shopping with my sister, Debbie to buy a wreath and 2 small (fake) trees, lights and decorations that the kids could make their own, and place on the windowsill of our room. Katie wasn't interested enough to finish hers. She skipped all of the opportunities at RMcD House to join in festivities, such as making gingerbread houses, caroling, a photo session with Santa or taking a holiday cruise. She just felt too awful. If you have ever loved someone who is suffering, you know that all who love and care for her suffer with her; that is compassion. It was a really hard time for all of us, especially since Katie and David LOVE Christmas.

The week of Christmas itself, Katie was an inpatient finishing a 5-day round of chemo; she spent Christmas Eve and Christmas morning in the hospital. I was with her, while Gregg stayed at Ronald McDonald House and visited us daily. We encouraged David to go home and spend Christmas with Uncle Charlie and Auntie Cheri, and to be with his grandparents, aunts, uncles and cousins. The Gerstenbergers really know how to celebrate Christmas, and we wanted David to be surrounded by that familiar love and joy. He did go, and he had a great time, but it was hard on all of us to be separated.

This year, we have enjoyed being in our own home, going to choose, cut and decorate a real tree again, hanging lights, making treats with Taylor, and (for me), spending quiet time praying with the Advent devotional readings. I love Advent; having been brought up as a Christian Scientist, I didn't know about Advent, and it was a revelation and a joy to me. The light and anticipation that are intrinsic to the season are helping me to deal with the darkness of the days and the strangeness of experiencing our first Christmas without Katie. Last year she was with us in body, but not in spirit, because she was suffering so much. This year, she is not with us in body, and I assume that she is not suffering any more; I feel she is free, and that is what I pray for her. I do not say "I know," because I cannot KNOW; I can hope and pray and feel, and that is going to have to be enough, for now. So I am thankful and joyful for what I have, and I will continue to love my girl with all of my heart. I wish she were here with us, enjoying Christmas, wearing her Santa hat with David...but she is not.

I found this poem in Elisabeth Kubler-Ross's book, On Death and Dying:

In desperate hope I go and search for her in all the corners of my room; I find
her not.
My house is small and what once has gone from it can never be
regained.
But infinite is thy mansion, my lord, and seeking her I have come
to thy door.
I stand under the golden canopy of thine evening sky and I lift
my eager eyes to thy face.
I have come to the brink of eternity from which
nothing can vanish--no hope, no happiness, no vision of a face seen through
tears.
Oh, dip my emptied life into that ocean, plunge it into the deepest
fullness. Let me for once feel that lost sweet touch in the allness of the
universe. - TAGORE, from Gitanjali

Tofino, BC, about a week after Katie's Celebration of Life