Today was very special -- the annual Rainbow of Heroes Walk. ... Basically it's an event where all the families come out into the sunny day and let their kids run wild and play, finally play, and just be CHILDREN, in groups and gaggles of other children, where they belong.
The following is a long article from a kind of diary kept by the mother of a transplant recipient. It goes into detail about a day at the Walk.
Day 122: Saturday, May 7th -- Rainbow of Heroes Walk
Today was very special -- the annual Rainbow of Heroes Walk. This is the social event of the season for transplant families, a sort of debutante's ball for bone marrow kids. This day "commemorates and celebrates" transplant families, and is also a fundraiser for the family support programs. Basically it's an event where all the families come out into the sunny day and let their kids run wild and play, finally play, and just be CHILDREN, in groups and gaggles of other children, where they belong. The kids were a fabulous, eclectic mix of every stage of recovery and health. There were 'normal' looking kids and bald ones, kids in wheelchairs and kids who were feeling a little lowly, but still there, mixing it up. Mostly there was a feeling of freedom and excitement and permission to run and tromp and travel in packs. At some point, all the adults and kids gathered together to walk collectively for 5200 yards, for our unit, 5200. The weather was glorious. Sunny and mild and crystal skies. There were all kinds of activity booths and bbq and huge inflatable slides and an enormous cake with every child's name who had been transplanted in the last year, and a giant board with pictures of children who have gone through transplant over the last 10 years or so, many of whom made it, and many of whom didn't, all of them loved, all of them honored. The whole day was lovely and tender and also bittersweet, or sorrowful-sweet, because of the kids that weren't there being kids -- the kids who are still in-patient and the kids we've lost.
We arrived a little late, and had to rush to get to the giant inflatable tiger slide and bouncy room before the walk began. Gracie was in heaven. Gabey was scared to death, but demanded that I carry him up the 50-foot inflatable tiger ladder and slide down with him anyway, as he clutched my hair. Gracie was beside herself with excitement just to be in crowd, feeling her oats, and pushing the limits of independence. She kept walking off on her own, into the friendly easy crowd. I don't think I've seen her this happy since the day of the block party for her in Brooklyn. Because we had forgotten to bring a hat to protect her head from the sun, Brian ran out and got what he could find at the local supermarket - thus she spent the day sporting a white baseball cap emblazoned with the phrase "World's Greatest Grandpa." Varun's parents where there, and Jake, and his brother Andrew and sister Jenna, Colby and family there, and a mother I'd never met, but who has been a fellow traveler on the caringbridge sites and a warm-hearted supporter of so many children, Claudia, Daniel Puckett's mom. One highlight of the day for all of us was getting to see Bobbie, Gracie's primary nurse, after such a long time. She was equally thrilled to see Gracie and they gave each other a long warm hug, like a couple of veterans meeting in peacetime.
Towards the end of the day a mother came up to me and told me how cute my daughter was and that she had (to my horror) been posing with their family during group photos. This woman was the mother of a little girl, Maddie, who passed away in 2003, post-transplant. She and her family had come all the way from California to honor her daughter and help the families of other children in active battles. She was one many of parents walking around in t-shirts with pictures of their children's faces. Some worn by parents who had lost their children, some by parents who had gotten them back from the brink and were five years out into life, still treasuring it, still holding a little bit of their breath, and some worn by parents we know, whose kids are actively fighting to get well. No matter where families were on their transplant journey, a deep current of knowing and caring seemed to run between us. Both Brian and I felt how rare it was to be in a huge crowd of people all of whom could understand completely what others have been through. And it was great to see Gracie in a big crowd where she didn't stand out at all. There were plenty of fuzzy or purely bald heads bopping around.
The whole day was this exciting collision of life's poignancy tossed beside its gritty details. Beside all the pictures of children on t-shirts were actual children running around, being their screaming, sticky selves, occasionally pushing, not at all ideal, but healthy (or recovering) kids in motion, being alternately cute and wretched. The big boys were tearing through the inflatable lands. Gabriel spent a good part of the afternoon fighting off the idea of sharing with a little guy named Spencer, around his age, who also wanted to sit in the miniature rocking golf cart we won in a raffle. Gabriel kept screaming, "mine, mine, mine" the inescapable chant of childhood. Luckily it was a loud crowd. Bobbie's four sons were there, all in tie-die shirts. Her eldest son was heading a band that played during lunch. They were so vulnerable and cool at the same time, standing up there on the stage -- four or five adolescent boys playing a lovely, soft, slightly warbling version of "Let it Be" while everyone ate bbq and cold oranges.
It was surprising and touching to be reminded of what, given the chance, people want to do for one another: all the nurses manning booths; the burly husband of the nurse practicioner Debbie helping to break down and carry chairs; Laura, the physical therapist, pretending (as she used to do in the hospital) to be "Swiper the Fox" chasing Gracie around the track, and Bobbie pushing her for most of the 5,200 yards around and around in her stroller. These are the same people who give all day long, still giving on their own time. The medical team had collectively knit a beautiful quilt, won, very appropriately, by Ramya and Deepok. At the end of the day a woman who spoke only Spanish approached Jane, the nurse coordinator, to say something that we finally deciphered as "I want to volunteer to help, to do whatever is necessary for these children."
It was also startling and wonderful to see all the people we encounter each day as medical professionals out and about as ordinary people with their own families. I had a sensation almost like seeing that page in gossip magazines with pictures of stars walking their dogs or lifting their kids out the car with captions like, "They're just like us!" Of course they (the staff, not the stars!) are, and it was great to see them within the context of the rest of their lives, when they give so much to ours. At the center of it all, was Dr. K in her overalls, with her family, her own healthy children. What a life, to have given so much of yourself to everyone else's children. We saw today again what a tremendous, almost staggering, job she does. Not only as a virtuosic scientist and clinician, but also as a social leader, a woman who can envision a day like today. She seems to believe that healing is a collaborative process between the body and mind, and that a day in the sun, a day of raising money for things like art and counseling and financial assistance to families in need can translate into healthy children.
Watching all the families and staff gather on the track to begin the walk, while "Here Comes the Sun" played over the loudspeaker, felt the constant knot of fear and tension and sorrow at the center of my chest loosen. Felt overcome by the power of a group to do good things, to care enough to collect in one place and walk side-by-side, and also painfully aware of the families, the children, who were not there. After the walk we recollected on the grass and released hundreds of balloons. Many of the balloons had children's names on them, or small written notes. Ryan Smedley's mom was there, with a message to her "little cowboy" on a purple balloon. I sent up a balloon with prayers for peace Sara and Deondra, and prayers of continued healing for Gracie. As the balloons floated away they played this gorgeous cover of "Over the Rainbow" by the Hawaiian singer, Iz. His version is haunting, and simple. Just strumming ukulele, and his pure, lulling, high ranging voice. Wistful, hopeful, sorrowful, nostalgic. The balloons drifted westward in a lazy wind and most of us below wept quietly. Sue, our nurse practicioner wiped her eyes and cried and wiped her eyes and cried. I was so moved by her grief. The nurses and doctors here give and give and give and mostly just do their jobs and carry on. I know how deeply the staff care, but they don't often let themselves show their grief. They can't; they have to function. I imagine they sometimes have to tend to a child who is dying in one room and then step into the next room and give their full attention to a child who is doing fine but needs some subtle adjustment to medication. They give the same never endingly competent, caring attention to all. So I felt glad, paradoxically, so see Sue have a moment to mark the losses that are hers too. Dr. Bean, one of the fellows, put his arm around her. And they stood together not only as two people who devote their professional selves to medicine, but as what we all are eventually -- people who have loved and lost.
The balloons became little bursts and smears of color floating away from us, out into the sky, and Iz kept singing about the place where "trouble melts like lemon drops," as they edged upwards, a little armada of weightless, nameless longings. A few balloons tangled in the highest branches of nearby trees but most did what balloons are meant to do, drift away. Finally they were gone, scattered into the pale light and thin air of the upper atmosphere, carrying along all the hope, all the grief, all the exhaustion, all the prayers, all the pity and anger and bitter pills of watching children suffer, and the euphoria of watching them veer away from death and come home to us, and the unstinting ache for the those who don't. All of it lifting off of us, because it is ephemeral, all the joy and the pathos, the detritus of living that washes over us and passes away. Mostly only love remains, I think, mostly only love is held by gravity. That is what stays with us, that is what sticks, and holds us to the ground. The crowd setting out to walk around the track to "Here Comes the Sun" was love. The woman who walked all 5,200 yards holding a giant poster board with pictures of the pretty teenaged daughter she lost, wanting her to somehow still be known, was love. And the people milling about the wall of photos looking carefully at every face of the children who have been through transplant, that was love. Some of the faces were healthy faces, ten or two or five years out, returned to life. And some lost from it. But all were loved, and beheld.
I tried to imagine what all of us might look like from above. The crowd clustered on the grass, a hundred heads tilted up watching the balloons move gently, slowly away in a large buoyant cloud of color trailing all our silent hope and secret fears and deepest yearnings and unsalved sorrow. Why is it that balloons so perfectly sum up the wistful release of grief and the innate optimism of childhood at the same time? It's not just the way they perform that simple, fundamental, mystical trick of defying gravity, not just the instant cathartic thrill of seeing an everyday object float past our grasp. It's that they're tiny reenactments of our own essential condition, the way the world itself floats, moving soundlessly, smoothly through space. Whirling through the dark with us on board. All our drama, all our needs, and plans and thwarted desires, all of it just a scattering of movement across the surface of planet that is a pin prick, a mere nothing, but a miracle none the less -- the only place in all infinity that we have yet discovered conscious life. And conscious life begets love. And love sticks. Now matter how small our individual lives, no matter how insignificant the whole of humanity is, dinging its dings into the silent dark -- love has matter. It pulses outward, even when the heart is turned in. There was a world of love surrounding those balloons, and us down below, doing our best to hold onto each other. I know I was holding Brian's hand as they went up, and gradually lifted out of sight, and he was holding mine, and we felt, as we are, connected through our children for all time. And I felt, as I imagine he did in his own way, connected to all the children who there, and those who were not there, and the parents, forward and backward, who will suffer their child's suffering, or live past their pain.
