Motherhood Adapted

I like Daddy more than Mommy because he makes me breakfast,” proclaimed our five-year-old son as we sat on the couch getting in our last cuddles before bedtime. Under normal circumstances, such a comment wouldn’t phase me, his mother. It is the careless, flip-flopable comment of a young child that shifts by day or hour and can be easily shrugged off.

It wouldn’t have bothered me three years ago when I could still fix food and perform so many other parenting duties. But now, my slowly paralyzing disease, ALS, has rendered me unable to do the smallest of tasks, much less a complex one like making toast. I can’t walk to the kitchen. I don’t have the strength to open the fridge door nor the flexibility to reach the cabinet door. I lack the dexterity to open a bag of bread, use a butter knife, and all of the tiny steps in between.

So when Reuben says this, all my insecurities, fears, and sorrows tumble out. 

I tell him I would if I could, taking a breath between each word, using my full concentration. I don’t have an ease of speech to espouse the whole story, which is that I desperately want to not only make him breakfast, but put away the materials, sweep up the crumbs, wipe his little face,  wash the dishes until my fingers become prunes, and be whole again. His seven-year-old sister, Mae, builds a dam against my rising tears “it’s because of her ALS. If mama tried to make breakfast food it would go everywhere!” She pantomimes me pouring ingredients in a bowl, hands flailing about wildly, eyes panicked and mouth agape. Her portrayal is spot on. Reuben belly laughs and my body relaxes, grateful for this moment of honesty via levity.

I know he doesn’t fully grasp why I don’t make him breakfast. It’s not personal, it’s concrete. In his mind, one parent takes care of a basic need, delivering joy and sustenance, every day. In my mind, it brings up a deep, painful longing in me: to do all the simple acts of caring for another, what I see as the core of motherhood. 

It’s been years since I have carried my children, read them stories, helped them with a stubborn zipper or inside out pant leg. Society already makes mothers vulnerable to feeling guilty about perceived shortcomings and missed opportunities. But when you can’t physically take care of your children and instead observe as someone else does, it’s a weighty sorrow of motherhood diminished, just within reach but altered. 

Though painful, it makes me realize just how “enough” I was before ALS. How enough all mothers are, so long as they are doing their best, most of the time, within their individual circumstances. At times I have that feeling of enough. When lying in bed with my daughter listening to an audiobook, my hand resting on her little rib cage. When racing my son on my electric mobility scooter, he on his foot powered one. Countless other moments of connection.

I’ve had to adapt from viewing caregiving and more active involvement as meaningful acts of motherhood to accepting that showing them love and giving them my undivided attention can be just as meaningful. I see it when they shout “watch me!” then jump off the couch. I know it’s true when they fight over whose bed I’ll lie in as we listen to a podcast. I feel it when they kiss me, one lightly the other squashing, on the cheek.

But every now and then, I still need to grieve the mothering life I imagined. And inevitably and out of necessity, return to feeling enough just as I am.