Last night, I curled up in bed with my little girl. She lay her head against my arm and gripped my fingers with her tiny hand and whispered, I want you to stay here, Mommy.
Yes, I said. I want you to stay here, too.
And then I rested my cheek against the crown of her head and closed my eyes and inhaled the sweet, soapy smell of baby shampoo, felt the silk of her hair, heard the whisper of her breath and I thought, I want you to stay here, like this, always, curled against me, warm, safe. And I thought, I want you to stay here, like this, for years and years to come, until the days when you and I no longer fit together in this wee bed, when you are grown and I am old and your arms are the stronger. When we will still find comfort in each other. When you will still be my baby, only grown.
I thought these things, and I looked up at the clock atop her dresser and watched as the minute hand took one deliberate click forward. I looked up at the clock and I wondered, how would it feel if I were counting these minutes? These hours? These days?
It is not possible to hold a child too close, or for too long.
A family lost a child this week. Maybe it was the famous family, the one that we are all reading about it and talking about. Or perhaps it was another family, a family unknown to us, a family in Burma or Kinshasa or the Gaza Strip or Oshawa, Ontario or Saguenay, Quebec. Perhaps it was many families; perhaps it was many children. We lose count; we stop paying attention. We stop paying attention, unless the child is lost to someone that we know, someone that we know of. Then we remember. Every hour of every day, somewhere, someone suffers what we fear most. What I fear most.
My family is losing a child. Our loss is not sudden; it will not be unexpected. It's a slow loss, but an inevitable loss; the hands of the clock tick forward slowly, deliberately, inexorably. We count on those hands ticking slowly; we measure their movements carefully, reassuring ourselves that the pace holds steady, that there is no leap forward, that this particular clock never advances an unnecessary hour, that our days hold ample daylight. It's a slow loss, but an inevitable one.
We are better off, of course, for the trickling pace of this loss. We have many days, many hours, with this child. Not near as many as we would like, but still: we have time to spend and cherish, time to postpone our goodbyes and to pretend that their place on the horizon will hold its distance. My sister can wrap her body around Tanner's and feel the beat of his heart and the warmth of his breath; she can brush her hand across his forehead and whisper in his ear and assert her love for him in the now and know, as surely as his hand tightens around hers, that he hears her, that he knows. But the clock ticks over her head - over his - and she counts these hours, these minutes, these seconds. Every movement of the minute-hand is a movement lost, a moment lost, one minute less in a cherished life that is measured by the clock.
My mother called on Christmas Eve, a thick edge to her voice, the edge of a third glass of wine, the edge of regret seeking reassurance. I miss you so much, she said. I miss Emilia, and Jasper. I'll bet Emilia's so excited for Santa. She laughed, uncertainly. I wish we could be together. I wish I could be there, I would move there in a heartbeat, but I can't be there, because I need to be here, with Tanner. A pause. He's really gone downhill. He's declining really quickly. He's not going to last more than another few years, maybe. Another pause; the clink of a glass. After he's gone...
- I know.
After he's gone...
- I know.
After Tanner is gone, time will stop, and then it will start again, without him. I don't like thinking about this. I was upset with my mother for reminding me of this on a night that I wanted to spend in thrall to the optimism of Christmas - fear not, for behold: I bring you good tidings of great joy, which shall be to all people - and to the sweet prospect of waking up to tiny pajamaed children filled with glee. I wanted my own now, free of sadness, free of the prospect of death, free of fear of that black hole of timelessness opening up and swallowing us all. I wanted to not walk through the valley of the shadow of death. I resented my mother for pulling me alongside her in her stroll. And that was wrong.
It was wrong because I am so, so fortunate to be able live my life with my own children, free of the clock, free of the incessant clang of the tolling bell, free of the the hourglass, the blind sands - free, at least, in my ignorance of, my deafness to, the tick, the clang, the passage of the sands that mark the time that passes for each of us. It was wrong because I am so fortunate, and I need to remain mindful of, and grateful for, that fortune. I can hold my daughter or my son and not think, here passes one more moment, here we move one step closer to death, here is one less embrace that we will share. I have a life with them, a now with them, that is free of visible shadows. I am blessed. And I am insufficiently appreciative of this blessing.
I pay little mind to the time that passes with my own children, apart from vague reflections upon the pace of their growth and the fleeting beauty of their babyhood. I mark Tanner's time, I count it on my fingers and toes, I spend hours, awake at night, calculating how many more visits we have, how we shall spend those visits, how best we might use our time, how we might take time and wrest timelessness from it, in the form of memory. But I forget to mark the rest of time; I forget that I do not have infinite stores of time to spend with my children; I forget that the bell tolls as much for us as it does for Tanner, the only difference being that we do not know when its tolling will stop.
I do not pause often enough; I do not often enough stop and hold my children, just for the sake of holding on. I do not take as much time as I should to just hold them and listen to their hearts beat and feel their breath upon my cheek and their hands warm within my own and hear the tick of the clock - feel the tick of the clock - and be grateful for every. single. second. In ignoring time, I am doomed to lose it. I need to take time, take measure of time, give thanks for time, for whatever stocks of time that I am blessed to have. With Tanner, with Jasper, with Emilia, with all whom I love and with whom I wish to have more time, always more time.
My sister, Chrissie, will be running, this weekend, in a marathon to raise money for Duchenne's research. There's no cure for Duchenne's, but there's always hope, and Chrissie is running, as always, for this hope. With my words, I can cheer her on, and I can ask others to cheer, and to help by cheering and to cheer by helping.
You can donate in Tanner's name HERE. It probably won't change the ending to this story, but it will help the narrative maintain a recurring theme of hope. And that, right now, is all.