Tag Archive | children

The Honor of Weeping.

 

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My very special friend, Daniella.

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

Speaking Second

With my two new friends and Ozzie, the LCFOG mascot!

With my two new friends and Ozzie, the LCFOG mascot!

A few days ago, I spoke at a fundraising luncheon for the La Canada Flintridge Orthopedic Guild. About three hundred or so people attended. It was lovely. Before my little ramblings, they played a short video that introduced our guests of honor. The video told the story of two young girls, both of them albinos, who lived in Tanzania. In some places in Africa, albinos are considered to have magical properties and they are hunted for their body parts.

Though the Guild raises money for a hospital here, they have branched out to help special kids worldwide. As they explained this in the video, they showed how these innocent young girls had lost their parents, and the younger had had her leg chopped off with a machete, and then left to bleed to death. Her older sister helped her, and she survived, but not with adequate medical care or a prothesis, (artificial limb) that worked for her.

So this incredible group flew them both over and provided the care and rehabilitation that they needed. Months of planning and giving and work went into this enterprise, I was awed by the commitment of this group. They have done so much and helped so many people.

Enter me, to their upscale ladies’ charity luncheon. After the short video, which left me in weeping, they brought the girls up. They are sixteen and fifteen, but so very much more childlike than the precocious mall-shopping teenagers most of us are familiar with. Very shyly, standing straight and proud on her new prothesis, the younger girl gave her thanks for all that had been done for her, and her older sister asked to sing a song she had written about their experience.

I don’t remember all the words, but the first verse was about realizing her mother was dead, and the refrain went, “And I cry and I cry, and I shout and I shout, I’m so tired of all the killing.” It was amazing, she sang it with no accompaniment and it was heartrendingly beautiful and moving. And then it was my turn to get up and speak.

The Chairman introduced me  as I was still drying my eyes and trying to clear my throat. I took the mike, walked to the front of this group of charitable people, and said, “I’m supposed to follow that?”

I mean, come on! Haven’t you ever heard the old adage for actors, ‘never work with children or dogs’ because they steal the stage? How about two children who have overcome unbelievable odds just to survive? Who were still so kind and gentle and loving that I wanted to hug them and not stop. I had planned to talk about the courage of some of the families I work with in my charity, The Desi Geestman Foundation, but the stage was stolen by compassion, by innocence, by courage, and nothing I could have said about bravery and hardship would have meant more. That’s as it should be.

So I changed it up. I talked a bit about my book, about the character of Ellen and how in “Becoming Ellen” she realizes that it’s not enough to just come out of her shell and participate, she realizes that she must contribute to the whole to be whole, something all these people understood. I talked about how my mother, who was there, had raised me to be helpful and kind, and how I had passed those values on to my daughters who still accompany me to many of my charity’s events, including helping to decorate the wards for holidays and the annual PJ party, when they get to meet the kids. From this experience, they grew up knowing that people are people, no matter how they look or how ill they may be.

Then I moved on to discuss the changing landscape of my life now that my girls are growing up. I told them how my husband and I were discussing how integral the girls’ lives and education had been in our everyday lives. Now with one at college and the other one driving, I find myself with more time on my own. I told this crowd of beautifully dressed and graciously behaved men and women that one day, Joseph had looked at me and said, “What are we going to do when they’re gone baby?”

And I’d said, “We’re gonna’ make love in the kitchen.” I mean, I’ll miss the buggers on a day to day basis, sure, but there’s something to be said for getting some freedom back. I might even be able to write several hours uninterrupted...in a row! And I’ll have more time to help others, to do more for the community, to interact one on one with so many miraculous people in the world. They really are out there, and sometimes, they come to visit when you least expect it. Of all the roles we all play in our lives, there is always one that is the most basic and true.

No matter how many parts we take on, how many different jobs we find ourselves doing in our lives, it’s important not to forget the real one, to be you. For me that means lots of laughter, work, and hours of doing nothing other than searching for beauty. Sometimes I find it in the sky, sometimes in water, and very often, in the smile of a child who has suffered beyond belief, but who is not only happy, but grateful.

What more is there to say?

Love to you all.

Shari, November 1, 2015