November 13, 2020

When my Mother Died of ALS, I Found Her Again—In my Son.

When my mother was ill and dying with ALS, one of our favourite things to do was to go on walks around the neighbourhood I grew up in.

Luckily, she had the variety of ALS that allowed to her walk, albeit slowly, up until a week before she died. I believe she got outside almost every day of her illness. For anyone who knows anything about the disease, this is a feat.

We would wander down the lane behind the house I grew up in or down the “secret path” to the ocean or down other lanes that frequented the neighbourhood. We would always stay away from the main streets, however, as mom didn’t want to run into neighbours and their looks of pity and quiet condolences. And also, perhaps more so, I think, she wanted those walks just for her and I.

I can almost see her looking at me on those walks, wondering what I was going to do with my life after she passed. I can’t say for sure she looked at me that way. But, my body almost has a memory of it even though my eyes didn’t see it.

What I remember most from those walks is the look of wonder in my mother’s eye.

She truly loved those walks. Somehow, she had the grace to appreciate the slowness the disease forced upon her. Though we could hardly cover the ground we used to, my mother made up for it by noticing the ofttimes forgotten-about details of things: the look of leaves drying in the fall, the blue paint chipping on a neighbour’s fence, a bee pollinating a flower.

It is this same slowness I am coming to appreciate in motherhood. My child is once again offering me an opportunity to be present to life as it passes us by. Because it is passing. And if death, and now birth, have taught me anything, it is that life is too precious to miss by being distracted.

We go on slow walks, too, my child and I. At the moment, I strap him to my body in a carrier or we walk in a stroller. Lately, his favourite thing is signs. Road signs, stop signs, any kind of sign. He makes excited noises every time we pass them, and I go up to them and let him put his hands through the holes on the pole. I stop and feel the signs, too, and think about the workers who put them there, the satisfaction they must have had when the sign finally stood straight.

My child, Zaeden, a boy, reminds me of my mother in other ways, too. He has the same nervous laugh my mother had; it was actually a kind of laugh that used to drive me crazy. My mother rarely cried in front of me, but I could tell she was upset when she gave this kind of laugh. It was a laugh that said she was on edge, that she might cry if pushed the wrong way. She so often turned to laughter instead of tears. And curiously, my seven-month-old son does the same. He laughs when he’s frustrated. He laughs when he’s tired. He laughs when he’s anxious, too.

Another thing they have in common is a look of pure compassion. Even when he was in the womb I could feel loved by him. It was something so unexpected and wonderful about motherhood—how much love these little ones have for us, pure love and acceptance.

My mother was always a compassionate person, but there was something about her journey with ALS that made this even more evident. As she grew closer to death she took on an almost saintly glow. So many of the mother-daughter difficulties washed away from us. Sometimes, I felt like we were watching them recede with the tide, like flotsam and jetsam being carried away by the bigger waves of love.

With a little one, it is like you start at that great oceanic place, something of the womb still there for months after the birth, their personality and quirks emerge later. There are difficulties too, of course, with babies. But they are common to all parents.

I like to wonder, as he grows older, will he take on more characteristics of my mother? Or is this a similarity I am seeing now partly because her death feels still so recent? I so badly wish she could be here now to meet my son.

I suppose only time will tell if the similarities continue or if they are a part of my psyche trying to close the gap. And though I made some promises to my mother I will hold close to my chest, there is one I think that deserves to be shared—it is the promise of showing up to life, of slowing down and paying attention.

Wherever you are, the gift of life is unfolding before your eyes. May you slow down to witness it, and savour every breath.

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