Being a “Donor Mom”

Nichole Smith at Chaos in the Country asked me to write a guest post for her blog from the perspective of the family of an organ donor. Nichole understands donation on a very personal level: her niece received a donated heart. We are both grateful for the miracle of transplantation. But transplantation and donation are not easy subjects. They force us to think about our own mortality.

If we met and I introduced myself as “the mother of an organ donor,” what would you think? First, you’d have to wrap your mind around the realization that the donor in question must be dead. Yes, I am the mother of a dead 19-year-old girl whose organs saved the lives of four people, and whose corneas, skin, and bone tissue improved the lives of dozens more.

Maya’s life ended in a freak accident. Allowing her organs and tissues to be given to strangers in need brought life and hope to the recipients and their families, and gave our family something to cling to in the early months and years of grief.

Two years after she died, I heard my daughter’s heart beating in the chest of the man who received it, a scene I describe in Swimming with Maya.

Today, 18 people will die waiting for an organ transplant. There are more than 105,000 people, many of them children, waiting for another family to make the most difficult decision a parent or spouse will ever face.  Even if you have put the pink donor sticker on your driver’s license, in the end, your next of kin must give consent for the donation of your organs.

In Swimming with Maya I describe my daughter’s irretrievable coma, and what it was like to stand next to her lifeless body as I prayed for her recovery. After four days at her bedside, we were called to a small windowless conference room.

The surgeon who had operated on Maya’s brain the evening of her accident told us she was brain dead. He explained that radioactive dye studies had confirmed what he had suspected: there was no blood flow to her brain. He had already called another surgeon to confirm his diagnosis of death from neurological criteria.

Then he turned to me and said, “Would you consider organ donation?”

His question hung in the air for a moment that seemed to stretch into an eternity. Maya’s face the day she was born flashed in front of my eyes, and then an image of my diabetic mother plucking at the sheets on her deathbed – a kidney transplant would have saved my mother’s life. I remembered the day I decided to become a donor myself, shortly after Mom died. Then I thought of other families in other windowless hospital rooms desperately waiting for good news.

“Yes,” I said.

In that moment, I felt an overwhelming desire not to let my daughter die entirely. The ventilator powered her breathing. Machines and tubes kept her alive. Her cheeks were still rosy. Maya was a “beating heart cadaver” – dead, but not quite. Donation seemed like a way to salvage her lost life. Giving my consent was an act of hope, of defiance, a way of keeping Maya alive.

On a recent fall afternoon, I visited my daughter’s grave. It was her 41st birthday. She has been dead for 21 years, longer than she was alive. In those two decades, I befriended the man who received her heart, and the woman who received Maya’s liver. Both were parents of young children at the time of their transplants. Those children who could have lost a mom or dad have grown into adults having children of their own. Because of our “gift of life” they got to grow up with their parents.

I didn’t have the power to change Maya’s fate. But I had the privilege of saying yes to something that brought joy to many people, including me. In my book, I tell the story of how donation changed the course of my grief and my life.

Please visit Chaos in the Country and leave a comment to enter to win a copy of Swimming with Maya. Thank you, Nichole, for raising awareness of organ donation.

What Every Memoir Writer Should Know

I’m delighted to be a guest on Choices today, the blog of a wonderful writer and dear friend, Madeline Sharples. Madeline challenged me to write a guest post giving readers the low down on writing memoir.

Whenever someone says she is writing a memoir I smile and think, “You poor deluded creature!”  Please allow me to explain.

I was that poor deluded creature myself when I set out to write a book about the life and death of my 19-year-old daughter back in 1993. Ten years later, my illusions in tatters, I handed in the manuscript of Swimming with Maya.

I literally felt I had experienced ten years of hard labor – yes, the birth pangs kind – the day I put the book in the mail to my editor. My mentor Ellen Bass had warned, “You will work yourself down to dust.” She was right.

I had poured my life, my grief, my love for my children, many of my most intimate secrets and worst mistakes as a parent and a human being onto the page for all to see.  I’ve never done anything I loved or dreaded more.

Writing memoir is like the repetitive bad dream of going to an important business meeting naked. You have to strip yourself bare and do it so artfully no one can sense your fear.

What every memoir writer should know? Only write one if you absolutely, positively have to and keep these points in mind:

Never, ever do it for glory or moneyThis goes for all writing, but especially memoir. To make money writing memoir you either have to be Bill Clinton or a celebrity who’s been to the Betty Ford Center. Everyone says memoir is “hot.” Translation: the market is flooded and your heartfelt pages will be up against thousands of other books. If, however, you have a compelling story and you tell it really well, you will have the satisfaction of bringing inspiration to readers.

Read great memoirsIf you don’t read memoirs, why would you write one? Read the greats, not just the current crop of writers. Read Vivian Gornick’s Fierce Attachments and Ann Patchett’s Truth and Beauty, throw in Dreams from my Father by Barack Obama and The Color of Water by James McBride, and don’t forget Rebecca Solnit’s A Field Guide to Getting Lost and Pilgrim at Tinker Creek by Annie Dillard. In other words, read the classics by the writers who have blazed the trail for the rest of us. And don’t neglect great novels and poetry.

Take at least three classes in creative nonfictionLots of people can tell you how to leverage Facebook or Twitter to create a “platform;” far fewer can teach the art of writing narrative nonfiction. Seek them out. Hopefully, they’ve published at least one memoir and are possibly teaching at a school with a great writing program. Some excellent teachers offer classes privately. Creative Nonfiction, the leading journal of narrative nonfiction, offers a mentoring program at https://www.creativenonfiction.org/

Start or join a writing group – Writers need readers. As John Rember writes in MFA in a Box, writing is like personal archeology. You must keep digger deeper, find the nuggets, and refine them. Having supportive yet critical readers will help you do this. Two-thirds of what ultimately became Swimming with Maya would never have been written without the feedback and support of my writing group.

Learn about the business of writingI took courses in proposal writing and marketing and went to hear agents and publishers speak at conferences. Go talk to your local bookstore owner about what is selling and why. Remaining naive or uninformed about the business of being an author will come back to bite you.

Let go – Once you’ve written and rewritten countless times, and had your book professionally designed, edited, and copyedited, and, if you are very lucky and persistent, it will be published. At that point, you must let go. You won’t be able to control how readers or critics respond to those words you sweated over for years. You must toughen up and learn not to take the maniac on Amazon who tells the world you are a selfish person, a bad mother, and a terrible writer personally. She is having a very bad day.

Please enter to win a copy of Swimming with Maya by leaving a comment. Thank you, Madeline, for hosting me on Choices!

 

Journal Writing and the Healing Process

For today’s stop on the WOW! Women on Writing blog tour, I am visiting Journaling by the Moonlight, a wonderful site hosted by Tina M. Games. Tina provides tips, encouragement, and resources to journal writers everywhere, with a special focus on mothers. She invited me to share my thoughts about how writing in my journal helped me heal following my daughter Maya’s death.

On April 2, 1992 I got the call every parent dreads. My 19-year-old daughter Maya had fallen from a horse and was in a coma at the local hospital. Could I come right away? I wrote down every word the Emergency Room nurse said and sat at my dining room table unmoving, staring at my spiky handwriting.

I eddied in a river of crisis, swirling in memories.  I kept my mind focused on all the “before” moments because the “after” was too horrible to comprehend.

In my book Swimming with Maya I recount how, as if moving through quicksand, I made it to the trauma center in Walnut Creek, a suburb of San Francisco. I sat in the ICU waiting room while Maya underwent brain surgery, and then faced my daughter’s limp body tethered to life support equipment. Throughout my nightmare, I had one anchor: my journal.

When I read those pages now, I see how divorced from reality I was. I recorded my belief that, against all odds, Maya would live. I sketched out plans for how she would learn to walk and talk again.

After a four-day vigil at her bedside, Maya was declared brain dead on April 6. My journal was where I wrote my grief, as well as recorded the moments of grace when I felt Maya at my side during the days leading up to her burial and memorial service.

I described my numb state of shock, and the searing pain when the shock wore off. I wrote about my suicidal impulses, and my determination to live and heal, mostly because my 11-year-old daughter Meghan needed me. In those early months, when my overwhelming desire was to be with Maya, the journal was a safe place to record my insanity.

And it was the witness to my gradual recovery. Of course many people played an important role in my healing, but it was the journal I trusted never to judge me or be frightened of my intense emotions. With other people, I had to pretend.

In Swimming with Maya I describe how crazy and unmoored I felt during the early months and years of grief. Many of those descriptions began as journal entries. As I was writing the book, I read journals that were decades old in order to research, recollect, and create scenes for the book.

My book, and my recovery, were conceived and created in the pages of my journals. Words make things real for me. Writing allows me to process complex emotions in the privacy of my journal’s lined pages. Grieving for Maya was the hardest work I’ve ever done, and my journal was my companion through those long years.

Today my journal pages are filled with celebration: of my two granddaughters, accounts of time spent with Meghan and her husband, or with friends. Of course, I still use those pages to work out inner conflicts. The journal is the raw material of my life and my writing. I cannot imagine living without it.

What stories do you tell your journal before entrusting them to another person? Do you use your journal for healing? I believe that to live and write well, our journals are an essential tool.

The Unthinkable Loss

“There’s no tragedy in life like the death of a child. Things never get back to the way they were.”

Dwight D. EisenhowerAmerican president

Let’s begin with the sobering statistics: 21,000 children die every day around the world. That translates to a child dying every four seconds.  In the United States, 53,000 children from infancy to age 19 die each year. That doesn’t count the young adults and older “children” who die – even a 50-year-old is someone’s child, after all.

We like to pretend that child death is rare. But it isn’t, it’s just more hidden than in the days when parents routinely expected to lose children to scarlet fever or diphtheria. With improved public health and technology, many more child deaths are preventable. But kids still die. Life offers no guarantees. Lisa Buske, who blogs at One Sister’s Journey invited me to write about this “unthinkable loss.”

Before it happens to you or someone you know, or even someone you read about, the death of a child truly is unthinkable. We just don’t expect to bury our children. As parents, we need the protective illusion that our love will keep our children safe.

I was 24-years-old when I became a mother and fell hopelessly in love with my bright, beautiful little girl. I could never have imagined that 19 years later I would be staring down at Maya’s face in a coffin.

Maya’s death demanded that I step into a new level of mothering – radical letting go. At the age of 43, grieving for Maya forced me to mature spiritually and emotionally, and to reach a new understanding of the meaning of love. Love, in my new universe, included the ability to allow my child to have her death, on her own terms.

I can’t sugarcoat this process of letting go. I thought it would kill me. Swimming with Maya shows how day by day I fought to raise my surviving daughter, Meghan, continue my professional life as a writer and editor, and find my balance in the midst of overwhelming sorrow.

Grief recovery is a dance where for every step forward you take two steps back, and yet somehow in the end you begin to spiral upward. Other than mothering, grief was the hardest work I’ve every done. I was fortunate to have a strong inner core, a set of spiritual beliefs, innate resilience, and a host of friends and family. Even so, there were days when I thought I wouldn’t make it.

How do we get back up after life knocks us down? This is the question Swimming with Maya attempts to answer. As a memoir, my book is a very personal account of one woman’s journey. It is not a self-help book, but it is inspirational and motivational because it shows how I became more resilient than I ever thought I could be.

Deciding to donate Maya’s organs and tissues to strangers in need was a huge factor in my recovery, and in the way Meghan dealt with the loss of her sister. We were privileged to have something miraculous came out of something horrific. That gave us hope. Having hope motivated me to keep on keeping on.

In Swimming with Maya I recount our journey in detail. Please visit Lisa Buske’s blog, One Sister’s Journey, and leave a comment on my guest post. I’d love to hear from you!