There’s a song every mother sings to her newborn child first to welcome her home to the world and later to ease her back to sleep in the lonely hours of the middle of the night. Every song is different for every child but each one represents the touchstone at the beginning of a child’s life, a safe place to return to time and time again. For my daughter, that song was I Will from the Beatles’ White Album. Now, sadly, I sing it each night to mark the end of my daughter’s life.
They say the first year of marriage is hell. My daughter was married for eight years and at the ripe old age of 30 found herself planning her own funeral. Apparently time is not a factor in the nation-state of hell. I spent my time writing and rewriting obituaries in my head that would do some kind of justice to my daughter’s short life. Is it glib to mention her favourite city was London; her favourite cereal Honey Bunches of O’s; her favourite makeup anything from Smashbox Cosmetics? All information gleaned from middle-of-the-night conversations, holding her close either in person or on the phone separated by the thousand or so miles between us, waiting for the medication to kick in.
I struggle now to remember and contain every small thing I know about her so it will last the balance of my own life. At 4:00 am, I’d lay awake singing the beloved song to her in hopes my words would vibrate on harmonic airwaves over the Rockies from the Pacific and land in her ear as she lay writhing in her prairie bed in the wee hours waiting for her suffering to end. This is not the journey a mother dreams about for her daughter.
I watched from a distance and felt her pain as she observed the milestones of others. A cousin makes partner, a friend has a child, her brother falls in love for real this time and she struggled not to resent them all. “Why me?” was never part of the conversation although “Why this?” was a constant refrain. Some people have cancer; some people neurological disorders; still others have heart disease or blood disorders. She had it all and more and was denied the simple pleasures of walking, eating, taking a piss. The tumor in her head grew daily, her grey matter pounded resistance and the every-four-hour regimen of pain relief barely delivered.
I want this pain to end but I know what that means, I said to no one in particular in the frozen foods section at the grocery store. I got used to leaking openly in front of strangers. My life was a series of footsteps in fog. Move forward. Keep walking. Don’t stop. I listened in private disgust to others as they bemoaned their respective lots in life, dissatisfied with their work, bitching about their marriages and the other minutiae that make up the average life. I perused bookstore shelves and felt flashes of rage at the litany of titles that litter the self-help section. Don’t sweat the small stuff, it orders. What I wouldn’t do for small stuff. I lost myself in work, in research of a world 400 years ago.
How do I help her? How do I survive it myself? I just don’t know, I said to young, pretty women in Le Chateau that offered their help to try and find something, anything soft and sexy in an XXSmall size 0. She felt like a total failure when she had to resort to the children’s section at Wal-Mart to buy her clothes. It’s hard to imagine my 30 year-old daughter dressed in clothes designed for the active 12 year-old but there was no denying it now. She retreated intellectually as well and that was the saddest part of all. Sadie so coveted her brain.
Clearly, I’m the student in the family, she’d say at dinner after bringing home yet another good grade in high school. Hell, I missed grade 10 and I still kick your ass, she teased her older brother.
Her illness changed us all. No more do we expect help when help is needed. No more do we trust the venerable institutions so valued by the average citizen to ‘take care of me when I need it’. No more do any of us have much to say to anyone preaching a higher power. She said it best for all of us when she said, you think “God” would put anyone through this? I don’t think so. No, Sadie. I don’t think so, either. And so I searched for poetry that might offer solace, or books that haven’t been written about how to experience the death of a loved one with a loved one, not separate from them. There are plenty of books about grief, still more about getting on with your life. There is nothing out there to help a group of people help their loved one die with dignity and share it together. Still, I wish there was. A God, I mean. I wish I could believe there was something, someone who would take care of me, she said. Until you get there, I mean, Mum. But don’t come soon, okay? I made the promise I wasn’t sure I could keep. You have to live it big, for both of us, she said. Those were the times I felt I had to be at my best. I had to engage, really hear the things she needed to say. She might only say them once. I had to hear them and remember everything.
One year, the Issues and Ideas section of the Vancouver Sun newspaper stated that, this year “…approximately 15,000 people died in Metro Vancouver; on average, seven people grieve each one of those losses. That means 105,000 people are grieving in Vancouver at any given point in time…. We have so few models of how to grieve that people’s coping skills at … [Christmas] time are not particularly useful.” No kidding. It goes on to share some brilliant suggestions that might help those people. Suggestions like “drink lots of water” and “rest” and, my favourite, “stay away from alcohol.” That’ll help all right. The enormous disconnect between the truth of life and death and what people tell themselves is the truth, that’s what got to me. If only the living part of the world would see the anguish the dying ones experience, maybe then some changes could take place. Instead the masses revert to such platitudes as “at least you have your health” and “at least your son is doing well”. This last one was always the last straw for me and, years ago, I began responding to it with a new move. Oh yeah? I’d say, which one of your kids are you gonna sacrifice? I have no problem admitting I enjoyed the horrified silence in response – my own version of violence.
I learned early in this game of parent-of-a-sick-kid that you have to be careful just who you say what to. It doesn’t matter now that I was right about the origins of my daughter’s illness all those years ago. The hospital, that money-sucking machine in Vancouver’s west side, preys on the fears of frightened parents everywhere, inveigling them to give, give, give and we’ll be there for you. They don’t tell you that if they blow the diagnosis, she’ll be beyond help by the time it occurs to someone in the system that the only thing left to say is ‘oops.’ Fat lot of good that does my daughter today. Those are a few of the million or so thoughts that flew through my head each day while my daughter still lived as she contemplated white cell counts, magnesium levels, grand mal seizure meds and catheter care protocols. Sometimes I had to remember to tell her I loved her. Often our conversations were so filled with medic-speak that it was only after I’d hung up the phone that it would occur to me it resembled a consultation and not a phone call between a mother and her dying daughter.
I knew it was getting close. I heard it in her voice. I saved messages from her for months, frightened that erasing them would erase her. And then there’s the question of when to go to her. When someone is ill for a long time and they live somewhere else, you parse out visits like cards being dealt from a deck. You don’t know how many there are, when the end of the hand will be played. You can wait and see only so long until you can’t stand it any more and you have to see them. I agonized over making a mistake. What if we wait too long?
I wasn’t ready when it happened. There were still things to do. She was going to help me lay out the chapters of the book we were writing about dying – our last defiant act together. And she still had to help me plan the garden we’re planting for her in the backyard of our new house. I’m good as long as it has petunias, Mum. Petunias? I didn’t know she knew a thing about petunias. Oh, and poetry engraved on rocks. I like that stuff, don’t you? That will make me feel like I have a place in your new place. Cool, huh?
The home we built was the beacon I needed, the flagship that would usher my baby back to her beginnings – the light in the window in case she got lost, its glow a reminder to her that she isn’t alone in the darkness. Here will be the place to heal from it all and learn to move into tomorrow without my youngest child at my side in this world. Promise me you’ll be all right, Mum. Promise me.
I will, I told her. One day I hope I mean it.
© Kim Reynolds 2012