I Carry the Weight of Other People's Sick Children

I Carry the Weight of Other People's Sick Children
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The IV bag hangs from a plastic seahorse suspended on a steel pole. A life-saving poison slowly drips through the plastic tube into the thin, fragile vein of a 4-year-old girl. Her face is swollen, her hair is merely a cap of fuzz, but her smile is electric. Today her anesthesia comes in the form of laughter courtesy of Looney Lenny the Clown. He calls the little girl "SofaHead" (rather than Sofia) and has seen her almost weekly for the last two years, from her initial cancer diagnosis.

I am blessed with healthy children, but through my husband, the hospital clown, dozens of seriously ill children have left lasting impressions on my heart. A professional clown who entertains hospitalized children five times a week, he has been doing this for twenty years!

Looney Lenny is a healer who brings medicine without pain or bitterness. He pulls silly plastic dinosaurs (Stinkasaurus) out of their ears and uses a Sponge Bob Squarepants to clean his armpits. His fast-paced, stand-up comedy style has otherwise sedentary children jumping out of their chairs, pulling their IV poles along. Children gravitate toward him: "Pull something out of my ear," they all plead. "Check your pocket," they all yell at him to dig for other ridiculous treasures in those colorful cotton squares.

I've learned in the course of a decade, Looney Lenny's compassion and devotion to his craft are unwavering because he gets out of the gig as much as he gives. In the Disney movie, Monsters, Inc., the characters scare children into screaming, collect the screams, and transform them into energy. The scream collection fuels the town's power supply. In this hospital playroom, I see a similar symbiotic relationship. The clown makes the children explode in laughter and their cackles and giggles, in turn, empower him to keep going.

Children's laughter is candy for the ears, and even sweeter when it seems to be in the presence of the ugliness and unfairness of childhood disease. Children fighting serious illness is a total wrong in our universe, like a pink and blue striped zebra.

I've been the woman behind the man behind the clown for over a decade. I've also been running the clown business for the last six years. I've met dozens of children and formed my own connections with disease-plagued, bright-eyed angels and their strong as ox parents. Living with sick children, often in and out of hospitals, requires superhuman strength of character, enduring patience, and the gumption and know-how of a doctor, a lawyer, and a politician to rally on your child's behalf. The potent dose of hilarity the clown delivers each week is welcomed by parents and children alike. He leaves them in a flurry of jokes and with a business card in the shape of a million dollars which they often think is real.

When the clown comes home, he doesn't have to be "on" anymore. He can let his shoulders slump forward and head collapse onto his chest. He can tell me how "Onion" lost all her hair or Alexpanther now can't see out of both eyes. Most times I listen, occasionally making consoling sounds. Other times I make useless remarks to make myself feel better. Every single time I thank the universe, the ether, and my invisible God, for my healthy children.

Over the years, I've tried to protect my heart from these children, always unsuccessfully. I don't get the reenergizing charge each week at the hospital; I am behind the scenes. When I do observe him in action, I laugh hard, which is a great disguise for the tears usually streaming down my face at most of his hospital magic shows. I cry from laughing so hard; he gets the children gasping for air because they're laughing too hard to breathe. It doesn't matter the joke; you get pulled into the magnetic waves of laughter. Sometimes I cry at the unfairness of it all. Fuck cancer. Fuck childhoods cut short by invisible viruses which suffocate our children from the inside. Sometimes I cry at the gut-wrenching love I feel for this man who selflessly delivers this gift time and time again.

But in my mind, I have a cemetery of all the children he's lost. The two sisters who weren't strong enough to fight Cystic Fibrosis; the lung beast took them one after the other, neither of them reaching 18. I'll never forget the story he retells of the girl who orchestrated her departure from this planet. She arranged who would come into her room, in what order, how long they stayed, and what they did. She told Looney Lenny which card trick she wanted him to do, even though she was blind to see it.

Looney Lenny dubbed Christopher "CrispyHead." His charismatic smile was matched by a precocious nature and a twinkle in his eyes, which shone right through his hip black glasses. When I met him, I thought he was the sibling of a sick child because he was full of life. I got to know him for over the course of 4 years, the whole time he was battling a barbaric growing monster in his mature little skull.

One Thursday my husband called me immediately after work, without waiting the 20 minutes to get home. "In twenty years, nothing like this has ever happened," he began. He sounded calm and quietly told me the story in facts only, almost emotionless. "I came in to do my show and they pulled me aside before I went in the playroom. They told me CrispyHead just died. The nurse took me to his room to say goodbye. They knew how much he loved me and figured I'd want to say goodbye. So I went into his room and was laying there as if he was sleeping. His mother was sobbing in the corner and gave me a hug. I didn't know what to say or do and stood there paralyzed in disbelief at how he was just so alive a few days ago. Then I had to go on and do a show for the other kids."

I actually let him get through the story without interrupting him, which might have been a first. By the time he finished, I couldn't speak. My cheeks were striped with tears. I tried to inhale deeply and swallow the large lump of sadness and anger. I couldn't get the image of CrisyHead's mother standing over her dead world. The thought of putting your baby in a wooden box and burying it under the cold hard earth, impossible. There are no words.

I tell him I don't want to hear the stories anymore. I don't want to meet these fairies and spirits who float around our world, glitter in snow globes and one day get zapped away by the same invisible God who shared them with us. These situations make me question faith. I wish I could believe the minute their tiny hearts stopped beating, beautiful downy white feathers would sprout on their backs, and we watch their emaciated bodies transform into plump, translucent cherubs, who fly off to reunite with God at the pearly gates of heaven. But those comforting stories only work if you live in the pulsing Matrix of organized religion. I don't. I live according to the religion of humanity.

Sick children permeate my life and they are not for me to save or bury. They become pages of my story; treasured souvenirs I collect like heart-shaped rocks.

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