For many years I have been one of the directors of a charity that assists pediatric cancer patients and their families. In that time I have learned so much about myself, suffering, kindness, courage, life, and most importantly death. I cannot now look at a child and not imagine the possibility that they might not make it to adulthood, or even their teens. It infuses every experience with the radiant reminder of true importance, a glowing reminder of the moment most precious, this moment.
There are so many memories that stand out. The director of the charity had already lost her own child, and yet she had the courage to face this unthinkable journey with others, again and again. But then came the call, she needed to talk, to weep, another of our kids was dying, and she just couldn’t fathom it. She wept, and then went on to hold other mothers’ hands and help them through the journey. Again and again. I stand in awe.
I remember walking down the halls of City of Hope and hearing screaming, I remember one of the nurses, while we were there decorating the ward for the holidays, exclaim, “I hate Christmas! So many kids die.” Because, she went on to explain, the terminally ill have a tendency to hold out for a special date, maybe a birthday, maybe Christmas, but then they let go. The nurses can do nothing but try to comfort, ease pain, hug family that are enduring the unthinkable in a constant state of shock. And when it’s over, they get back to work, clearing away the evidence of a loved patient who they may have known for years, and the room their lives once occupied returns to empty, until the next child comes to fill it. They return to work and start all over again. I stand in awe.
The Pajama Party, which we hold every year, patients, current and alumni, are invited. Each patient and their siblings receive pajamas, slippers, and many other fun gifts. Hundreds of people attend. We have a dinner, a raffle, games for the kids, and then Santa! My favorite doctor greets and embraces family after family with a huge smile and genuine joy, often remembering a child who is no longer with us by sharing a moment with the parents who lost them. I stand in awe.
When it became clear that a 12 year old who loved photography that we worked with was not going to make it, the doctors and nurses organized an art show for him. His lovely photos were displayed and sold to help his family with the horrific bills that would be all they were left with after they buried their child. My favorite photo was a shot down a city street with the sunset in the distance, he called it, “A Door to Heaven.” I remember standing next to the doctor as he talked to the young artist, who had received a huge platelet donation that day so that he could get out of bed and attend this event. They joked about him enjoying his cocktails. I stand in awe.
I remember one funeral, for a boy of eighteen, who we had been assisting since he was nine. He had lost an arm in the long hard process but he was the best hugger I ever met. He also had an amazing voice and he sang Wind Beneath my Wings at one of our fundraisers when he was only 11, not a dry eye. I remember his friends carrying his casket, the stunned loss on their still too young faces. When they sealed the casket at the gravesite, his mother, whose entire life for nine years had been caring for her gravely ill son, kept on straightening the drape on the casket as gently as if it had been a blanket she was tucking around him to keep him warm. The gesture was so intimate and it was so strange to me that such a large crowd of mourners were watching, that I turned away and looked to the sky to give her a sliver of privacy, though I doubt she even knew or cared for anything in that moment. That last, horrible, powerless moment when she could do no more. I will never forget the sound that she made, it wasn’t a cry, or a sob, it was from her very soul. It was a long, drawn out sound that rose and fell and vibrated the air around her. Keening. That sound is part of who I am now, I hear it when I think of these families and what they have endured. I stand it awe.
And then there are the children themselves, to a one they were the bravest, most accepting souls I have ever met. It’s as though they were finished with being mortal, they didn’t ‘need’ to be here any more, it was time for them to move on to the next stage. To a one they taught everyone around them what was true and important. To a one they offered a sense of perspective. I stand in awe.
Which brings me to the reason we began the charity. Desi. This girl, who at nine was diagnosed with a cancer so severe that the doctors gave her a five percent chance of surviving a couple of months, lived two years. In those two years, she got well enough to do many things, including going horse back riding with me, something I had promised her when she was very ill. This child, this exceptional human being, never lost her faith or her courage. Multiple times when we thought it was the end, she fought her way back, and she never missed a chance for a laugh. When a child is at the end, they are attached to machinery that counts their breaths per minute, and when it goes to zero and stays there, that’s pretty much it. So there she was, with her loved ones around her, watching the monitor, praying, comforting each other, when the monitor went from 5 to 2 to 0. They all leaned in, watching to see if this was it, after so much suffering if it was time for her to go home. No one breathed, everyone was drawn toward the bed, curling physically downward to be close to her, waiting, when suddenly, Desi’s eyes flickered, and she very weakly, but distinctly, formed an o with her mouth, and said, “Boo!” Everyone straightened up, laughing and relieved, she actually pulled through that time. I stand in awe.
But it was a short reprieve, and she was back in the hospital a few weeks later. When she finally, quietly, slipped away, only her mother was in the room with her. She told me that she knew that her daughter had died, but she didn’t call the nurses, she didn’t leave or reach out, she just sat quietly beside her daughter’s body and waited, thankful for the time she had with her, she told me that the thing she felt the most, was honor. She said she was honored to have been Desi’s mother. I stand in awe.
I still am a part of this charity, though now that I am not living in Los Angeles, I cannot take part in the active service as often as I would like, though every time I return to LA, I make it a point to go to City of Hope and donate blood and platelets, and visit with some of my friends there. I hope to find another place to fill where there is need when I settle wherever I may land, but my life is irrevocably changed already, my sense of perspective has forever changed. Things I once thought important are now laughable to me. My own children, who often accompanied me to events and the hospital to visit with the kids or help decorate for holidays, are markedly better people because of their experiences there. We are endlessly grateful to those children and those families, they have given us the gift of perspective that softens life somehow, makes the little things easier to bear, to release, to set free. I am not afraid to die, what better gift could I ever receive?
And sometimes I weep, just to think of them. Sometimes I smile when I recall their courage, and always I respect and admire the people who lost and lived to love and give back, almost every one of them turn to helping others in some form. I think of the remarkable human beings who care for these children every day, again and again, and never lose their ability to grieve each devastating death. Doctors and nurses who weep for the loss of every child they have cared about, and for, sometimes for years. I stand in awe.
Mostly, I remember the things I’ve learned so completely, that they are a part of who I am now.
That beauty can be found in a ravaged face. That love never dies. That your heart can be torn from your body and you can be glad to have had the capacity to feel that much, because the choice to not would have meant that you would never have have had that someone in your life at all.
I weep often, but not forever.
I care more fully, now.
I judge less, and look closer.
You never really know someone else’s story.
Especially the end.
You don’t know what might shatter your heart.
You might not yet know that you can survive it.
You can live to feel only honor.
You can make a difference for someone else.
I stand in awe.
Won’t you join me?
Shari, November 9th, 2017
