Wednesday, March 11, 2009

Goodnight, Moon

I’m driving south on I-95, a few dozen miles south of Manassas, Virginia. I'm listening to an audio book, but my mind keeps drifting. It is dark out, and I glance out the driver’s side window and see the full moon, bright in the sky.

I’m reflecting on this evening and thinking of similar evenings I’ve had this past year. I’ve just come from the wake of a child who spent nearly 5 of his 6 years battling the vicious beast of cancer. I was trying to make sense of it and not making any headway. The moon caught my eye.

I think back to last spring, when my Aunt died. She was in her late 70’s, and had been bedridden for many years after a stroke. In some ways, her death was a blessing. People talk of “quality of life” and hers was not one I envied. She’d had a full – if hard – life. She survived the sinking of the Andrea Dorea. She married and had 3 children, although her third child – a girl – was born severely disabled and institutionalized nearly from birth. She had a loving family. Her death was sad – she was a beloved family member. But she had had her fair shot at life. It may not have been even close to perfect, but she got to the starting line and ran the race. I could do the math on this one.

In December, my family was hit with the sudden and very tragic death of my cousin Melissa. The last time I’d seen her alive was at her wedding, not 18 months earlier. A lifelong epileptic, her neurologist changed her medication so she could safely carry the baby she and her husband so wanted to have. Melissa was a feisty one, and I remember thinking when she was 12 or 13 that she was ‘an old soul’. I don’t know if I attributed it to her illness or her status of “first born’, but I had this vague notion that she was born a few years later than she should have; She always seemed to be a few squares ahead of her peers in the game of Life. As tough as she was, she was 10 times a sweet and loving and giving. She was the uber-aunt, adored by her nieces, the person ready to jump in and help at a moment’s notice. While she swore – as a 20-something year old – that she would never marry or have children, she fond her soul mate, a sweet, burly teddy bear of a man. At 37 she married, and from there they started their all-too-short journey. The medication switch fatally altered her blood chemistry, and shortly before Christmas, she collapsed. She was rushed to the hospital and put on life support. It was December in Milwaukee, and it was snowing. My Aunt later related while eulogizing her daughter that her condition was getting grim. Her niece pulled her over to a window – it was dark out – and she pointed to something under a lit street lamp: a single, perfect snow angel. There were no boot prints around the angel, and they grabbed on to this talisman of hope and comfort after Melissa died. I don’t know if we look for these ‘small miracles’ to help make sense of the senseless; as with so many situation, you find any port in a storm. I know – while it may have helped – there is nothing to balance out the loss of a child.

As I speed down the 95, I glance again at the moon. While still bright, there is a slight bit of haze covering it. I think about these deaths, and about the one I have most recently faced.

How do you reconcile the death of a child - a beautiful, lively 6-year old boy? Cody Johnson was this boy, a mere slipknot of a child who loved pirates, legos, and his family. The cancer was so vicious and without remorse it claimed 80% of his liver, his ability to live a carefree childhood, and ultimately his life. He endured more pain than most of us will collectively face in a lifetime. His parents are in awe of the courage of their son. His father, Mickey, told me he never complained, never ever put up a fuss of having to go to the hospital. That’s not to say that Cody was sweetly ignorant of his predicament: when he was subject to procedures he’d sometimes put up a fight, he’d lash out in anger, or be plain grumpy. He rebelled against this slice of his existence, the one over-inhabited with needles, chemo, nausea, and procedures that kept him from being ‘just a little boy’. I’m not sure if he was brave or didn’t have a memory that didn’t include a life without discomfort and pain. His resiliency was born of experience that predated memory. He just knew that this thing robbed him of kindergarten and soccer, and often interfered with swimming in a pool or his beloved ocean.

As I entered the funeral home, I saw an incongruous sight: a white hearse parked behind a blue minivan. I’ve never been to the wake of a child – I have no experience against which to draw. I’m lucky in that sense. I don’t know how parents face this; I know there is no chapter in any child-rearing guide titled “Burying Your Child”. I know enough to know there are no words for a moment like this: There is nothing for a moment like this. I walk into the viewing room and see Cody’s profile peeking out of an impossibly small coffin. I’ve never met this child, and this is not certainly the way I wanted to. My eyes fill. I can think only of a pithy sentence: It’s just not fair. I see my friend Mickey and he looks strong but the fatigue and grief are etched around his eyes. I hug him tightly, this tough, sweet, genuine friend of mine. I suspect he is in the numb antechamber of disbelief and denial. I guess he is trying to get through the next days, the next horrible few days of saying goodbye forever to his beloved son, to be brave and solid and be like his hero, Cody.

His wife, Diane, is beyond sorrow. When I embrace her I have a sudden realization that all the strength she garnered for her son is – for the moment – gone. She feels so thin and fragile, I want to hold her forever and help her support her impossibly heavy heart. I hold her face in my hands and I want to say something – ANYTHING – that will resonate, that will help her in the certain dark days to come. I believed he’d get better – it was easy for me. I could make the logic work, that the chemicals would do their horrible, wonderful magic and kill the thief that was trying to rob this sweet family of their child. But he wasn’t MY SON; I didn’t have that emotional investment. I could stand pat on the science and hope for the best. It’s emotionally cowardly, but I have to admit to its truth.

It is this heartbroken mother who says something of such simple ferocity that I am left nearly breathless: I can’t believe Cody is dead! I never thought he would die! Even when he was so sick, I believed he would get better, that one day he would wake up and just start playing with his toys… She hoped beyond hope, and was betrayed by her hope and her child was taken and he is not coming back…what do you say to this? Nothing. I hug her again, tightly. She has been so brave, and devoted, and caring and still her sweet baby is gone. How can anyone make sense of this?

I go to see the boy. While waiting in the receiving line, I watch streaming slideshows of him. Anyone can deduce from the photos he was a feisty kid, full of life, in the thick of everything. You see him smiling, mugging for the camera, kicking a soccer ball, wresting with his brother or his cousin, Chris. There is such LIFE to this boy. And when I approach the casket, I see that yes, the funeral home has done a nice job in preparing him, but it’s not Cody, at least the Cody I have come to know. Regardless of the genetic makeup of this tiny body lying so still in front of me, this is not CODY. Cody was perpetual motion, and animation, and LIFE. Like a blossom, the beauty is on the tree, in the air, near the sky; the husk of the flower is on the ground.

I have a sudden realization and kneel before the casket and pray - not for Cody - but for his family. I pray for those left to mourn this brave, sweet child. I pray for his parents - for Mickey and Diane - that their grief will not consume them, that the beast will not further add to its tally of this family. I know this is a wound that will never totally heal, and like the beginning of his life, they will be living the horrible mirror image of a year of “firsts” where they will be desperately missing their boy and saying too often the word without. I know many people believe in heaven and an afterlife, and if there is one, then Cody is surely in it. If there is a God, I believe he is one that ushers children in without the scrutiny that is leveled on adults. I want to believe Cody is there; but even if there is no afterlife, Cody is still at peace and free from the pain, needles and chemicals. He may be gone from the earth, but he is most certainly not out of the orbit of those who love him.

I speed down the I-95. That moon is still there. I reflect back on how I believed in Cody’s treatment, I firmly believed it would work. I’m trying to make sense of something that is senseless – it is the ultimate exercise in futility. There are those who try and find some meaning in such tragedies – but regardless of whether Cody is an angel in heaven, or his illness causes a philantrhopic streak to raise funds to cure the disease – there is NO WAY you can convince me that there is some earthly math that will balance each side of the equals sign. Regardless of the aftermath, there is nothing that will mitigate the ultimate loss of this child. There can be redemption and solace, but not a loss of memory; It is the very definition of grief.

And now I look at the moon and wonder if my belief and hope were of any substance, like the light of the moon. I get angry for a moment – this moon is a fraud. It creates no light – it simply reflects the light of the sun. It hijacks it and passes it off as its own. Without the sun, the moon is nothing but a gray, barren, crater-pocked rock in orbit around our Earth. It’s a cold, lifeless place. But of course the moon doesn’t steal the sun, it redirects its light. And then it occurs to me: we are all like the moon. We would orbit this Earth, cold and barren but for the light and beauty of the warmth of something bigger than us all: LOVE. We are nothing without it.

I want to believe - regardless of the final resting place of the souls of those who leave us too soon – that we carry with us an ember of their love and humanity. And I throw up a silent prayer to the moon and beyond for these parents of stolen children that they not feel some sort of misplaced responsibility to live for their lost child, but to live life – with joy – for having had the blessing that was this child, for however unfairly short was their time on our Earth. And that in reflecting the love for their child, it will light their way.

For Cody and Melissa