Are there any kids in that house now? Do you think maybe there are kids moved in there now?
And then there you were, with bows in your hair, standing across the street from us, holding your mom's hand.
My girls beamed at the sight of you, and I could almost hear the world explode into wave after wave of the Hallelujah chorus as performed by some traveling angelic choir. The Miracle of the New Neighbor Girl.
It turned out that the traveling angelic choir gave an encore performance every time we visited, especially once my girls discovered that you did not consider a visit complete until you had found a suitable parting gift. Once, a teeny-tiny book with print so small it was almost like a secret code. Another time, bracelets, one for each girl. Later, a delightfully squishy and stretchy creature that left a rubbery smell on Frankie's hands, so that she fell asleep that night with one palm pressed against her nose, off to dream of magical elastic things.
Before you moved once again, away from our street, your mom gave me all your old clothes, too small for you to wear anymore and just right for Frankie.
Then on the last day, your mom gave me another bag. This one was filled with clothes I knew you could still wear. I kept them by the door for days, until Annika took it upon herself to go through them.
She lifted one of the dresses close to her face and inhaled deeply, "Oh, this smells just like Hannah!"
And I thought to myself that maybe I shouldn't ever wash them. Or instead that I should take them to Goodwill where other people would buy them, and kids would wear them who would never lift that fabric to their faces and remember you, and wonder where you are. Or that I should take my black Sharpie and mark each tag with your name, like graffiti upon the fleeting OshKosh wall of childhood.
A few months ago your mom and I had a talk, and she asked me about organ donation.
I choked up. I don't think I gave her a very good answer, if I gave her anything at all. I am ashamed of myself for that. I should have at least had the courage to talk straight and unwavering to her, when she was trying hard to do the same in a situation so awful that I didn't know how she kept moving, how she managed to pick up the phone or make coffee or dress you for school in the morning.
Later on, back at my own house, it occurred to me that organ donation would most likely not be an option, not since they had made the (wise and caring) decision to keep you out of the hospital and at home, with your family, all the way through. Tissue, maybe. But not organs.
It hit me, then, that organ donation is only possible at times when there's been hope. When something terrible and swift has happened to an otherwise healthy person, who is rushed to a hospital where doctors and nurses work hard to save whatever life has come before them. When machines and drugs are used to help the body, as the medical team works to repair whatever damage has been done.
Organ donation comes after hope is offered, a last-minute save from medical science or triumph of the will or divine intervention or wherever we pin our faith.
It comes after that hope is whisked away.
Organ donation and the world of life-saving transplants can be viewed from so many angles: as an awe-inspiring medical advance, as a tale of redemption, as a modern day parable of the Good Samaritan. But it's impossible to talk about organ donation without talking about death, and our desire to make our deaths meaningful, as meaningful as our lives.
I think maybe it was around this time that I began to wonder about what we do as organ and tissue donor advocates. About how we talk about it, and how we approach signing people up to be donors. It's not that I changed my mind about whether I believe organ donation is a good thing (undeniably), or whether I think people should sign up to be donors (yes, of course), but I wondered what, exactly, we offer when we ask people to sign up.
If it's the promise to honor life as a gift, to do our part to help others if we can, then I know what we are about. But if it's about making meaning out of death, of turning something awful into something miraculous, then I am less sure.
Is that even possible? Can we make it into a complete story, but one where the ending comes before the beginning? How deeply do the lives and deaths of strangers enmesh? Where is the boundary, and what can we make of it?
Sitting there at home, thinking about that conversation with your mom, and then coming up with more questions than I could ever answer, I finally stopped myself when I realized I was trying to solve an impossible dilemma: Which would be worse--losing someone after all hope was lost, or to never be given cause to hope in the first place?
Over the years, my own informal observations have led me to believe that there is nothing like having a seriously sick child to convince you once and for all that there is no God, no heaven, no master pattern behind the weaving of our small lives into the universe.
Unless, of course, you're already partial to the idea of a God, and then the sick child business is going to make you a believer in a big way. Like you might stock up on canned beans before the blizzard moving your way on the radar. Like you might sing in the shower instead of crying, because you know your youngest is listening in the next room. Like your life now depends on getting everything right.
Which is to say that, as a matter of fact, I've never met another parent with a sick child who doesn't believe in God wholeheartedly.
I have no idea what losing a child does to that faith. The first mother I knew who lost a child did not talk much about her beliefs, although I knew she held them dear. I drove to her daughter's funeral, my belly huge with Frankie kicking me as I cried. The worst part was seeing that tiny casket wheeled up the center aisle of the church. That same flood of emotions which turns us into warm, happy goo at the sight of itty-bitty leather baby shoes, so useless and ridiculous and perfect, works in the opposite direction when the incongruously miniature represents such loss.
Later I told the mother that I was so glad she believed in God, and that she believed in heaven, because it was so hard to contemplate death being the end for a child, who had only just stepped into the beginning.
To her credit, she did not punch me in the arm, or shout, "Hey, idiot! You think believing in God makes this any easier? Think again!"
My thinking on the subject has not changed much in the intervening four years. When I saw your mom's email in my inbox, the subject given only as your full name, and sandwiched in between messages announcing a "Clorox Disinfecting Wipes Blog Tour!" and the announcement of new Donate Life Illinois high school programs, I remembered my clumsiness at that funeral four years ago. I thought once again about my own disbelief, and found myself hoping once more that I am wrong, and that whatever comes after is at least well-stocked with hair bows, and includes Elton John on the playlist.
I haven't told my girls, yet. I will, and try to answer all their questions about what and how and where. I don't think I will ever be able to answer the why one. Even the where is hard, the answer caught between nowhere and everywhere.
So (and I don't really know why I did this) I pulled out all my old photo albums, peeling back the shiny acetate to pull out my favorites and put them together in a line on the floor. There on our ratty white berber was Kenya and Turkey and Bulgaria and Austria and Germany and Michigan and Wisconsin and Florida, ending in our own backyard.
The more I looked at those photos, the more they seemed to tell a story, and that story was about you, too.
I cleaned the stray crayon marks off my scanner, and put the images into a folder on my computer marked with your name. I wanted to do something for you, to mark the importance of your short life in this world. Or something for your mom, to give her something to help her remember how easy it was to fall in love with your quirky and hilarious and charming ways. But in the end I think we can never do anything right or helpful at a time like this. In the end, whatever we do or say is really for ourselves, to convince ourselves that, whatever our beliefs, memory will somehow be enough to go on.
In Lines from moreena on Vimeo.
music by Kate Rusby