The truth I dare not say was chronicled in a recent blog post by Susan Ellison Busch. She speaks eloquently about having a child with a disability and the loss that comes with grappling with the child that you expected was not the child that you got. This is not the type of topic that I bring up at cocktail parties, and I tip my hat to her for the authenticity of her writing.
I have a kid with a disability and I have other children too. Being the mother of any child involves this secret chronic sorrow. The losses of motherhood pile up early: the baby who won’t settle in your arms; the toddler who runs away from you; the inevitable loss of status in a child’s life – slowly you are replaced by teachers, coaches, friends, adolescence, girlfriends & boyfriends and college. And then one day your children are simply gone.
My beloved daughter lives a thousand miles away, and I’m thankful for this relatively close distance. We manage to steal visits every few weeks. My eldest son is even farther afield. I haven’t seen him in 10 months. I climbed into my car at 5 in the morning yesterday to embark on a trip to see my boy.
The streets of Vancouver were deserted so early on a Sunday; the traffic was scarce and the lights were all green. I played that damn Mumford & Sons cd, which always reminds me of my wayward son. I don’t know why – he would detest such mainstream music – maybe it is the tinkling piano or the quietly strumming guitar. I think it is the sad lyrics:
And in time
As one reminds the other of the past
A life lived much too fast to hold onto
How am I losing you?
There was a crack in my shell and I blinked back tears in the darkness of my little car. My absent children have never faded from my mind, but I put missing them in a tightly locked box in my heart. I’m normally terrible at compartmentalizing, but compartmentalize them I have done, to save myself from collapsing in to a regular heap of tears.
I often cite the serenity prayer to staff at my work at a children’s hospital. Think of what you can control, I say, and what you cannot. You can’t control the system, or your manager or your colleagues, so let go of that, I say. All you can control, I say, is you – what you say, how you treat others, the thoughts in your head. My flown children soar on the outer edges of my serenity prayer. They belong to the world now.
For 41 hours, I’ll pop in as a visitor to my son’s life. This trip is to see his face, to hug him, to tell him that I love him, no matter how many miles separate us. A mother’s life is full of losses – loss of that dream of that perfect child (here’s a spoiler – the perfect child doesn’t exist anyhow, even for typical children), loss of identity as a mother, the loss of children grown. To live with that sorrow and to avoid a middle-aged life of overbearing bitterness, we must store that sadness in that little box, take it out and examine it only occasionally, to save our fragile hearts.
When I finally saw him after ten hours of travel, I hugged him hard and let out a strangled sob, embarrassing us both. “I love you,” I said. “I love you too Mom,” he said. And that had to be enough.