With his head on my lap as we sit in the back seat, we drive home.
He is heavily dozing under a medicated sleep, and the husband and I wonder how we are going to get him up the front steps into our home. Why not drive around some more, run some errands if you want, I say to my husband. We’ll stay in the car until he starts to wake up.
So that’s what we do.
In the parking lot of Costco, while the husband goes inside to get some things we need, I sit in the back seat, smoothing back D’s hair with my left hand as he slumbers on in my lap. I trace the soft curve of his nose, run my fingers over his eye lashes and gently over his upper lip, studying the mustache hairs that are now growing. My finger lingers on the dark marks on the sides of his eyes — marks that have stayed for four years despite my lotions and potions to fade them.
They are emblems of D’s worry and anxiety, from when he uses his thumb to scratch the skin raw on the sides of his eyes. Every time they heal and start to fade, I catch him reopening the marks with his worrisome scratching.
They are smooth for the time being, as faded as they will ever be.
I bend down and kiss him — on the forehead, cheeks, tip of his nose, on each eye. I lift up his hand in mine and plant kisses on each finger tips. Physical demonstrations of affection that normally he would shrug off as fast as he would push off my hand smoothing his hair. D offers up physical love on his own terms, in his own time and place. Often, when he is most upset and writhing in tears and wails, there is not much I can do but sit near him — and not too near. My touch at that time is often rankling to his skin. As desperately as I want to hold him, distance is what he needs.
So I take this opportunity when he is sleeping to cover him with motherly affection. It is for my sake more than his, that I may mask my sorrow by marveling at his perfection.
How does life go on like this? One of grief’s cruelest tricks is that we cannot be rendered incapacitated by it. Sure, we may be for a time being. But eventually life must go on. Groceries must be bought, dinner must be cooked, work must be done, plants must be watered, children’s homework must be supervised, dishes must be washed and crumbs must be swept off the table.
What did I expect? I expected nothing. There is no making this better. How will everything be all right? There is no fixing that which happened. No annual doctor’s visit has the power to reverse the unbearable wrong served to D. It can only confirm that which broke my heart a year ago.
She utters the words to me that I say to myself, when I prostrate on the prayer mat and press my head to the floor – God is the only one who knows. He knows His reasons, He has a plan, He trying the patience and love and will of His most beloveds. When the head pounds and the tears choke and this refrain echoes in my head, I hold onto it fast, dearly, tightly. Some days I believe it. Other days it rings hollow. But the refrain never leaves, running through the synapses of my nerves and the coils of my brain as beautiful and unrelenting as the autism in D’s brain.
Grief is meant to be swallowed and digested, masked behind the daily chores of life. And yet that’s what hurts me. I want to remain prostrated, hidden. I want to give into it and not move beyond it. But that is not the way this all works.
It is a most peculiar thing, this grief, living in a corner of your heart with an aching comfort. When you move forward and momentarily forget it, you feel a betrayal of that sorrow you believe you should always be feeling. You feel that betrayal towards your loved ones who move on with their jobs, schools, eating, sleeping, playing, living. And yet, what else can there be? Life must be lived, and lived in a manner that is as full of happiness and hope as possible, though that too feels like a betrayal at times.
D has adjusted. He always adjusts, he always moves forward. No matter what the challenge, what the struggle, what the pain he endures, he wakes up, lays his trust in us and in God and moves forward. He looks to the light. He lives at times in the dark. He smiles. He cries. He laughs. He weeps. He calls out in verbal stims and sounds of joy. He wails. He loves. One day. Then the next. And next. Day in, day out. Breathe in, breathe out. Intake, outtake.
So must I.