I hold my breath as he searches the keyboard on my MacBook for the ‘A’ that comes after ‘J’, pausing to examine every key, so close his chin is nearly resting on the trackpad. He finds it and triumphantly types it in.
We sit side by side at the dining table in our lakeside cottage. Lego pieces by the dozen are scattered across the tabletop, left in limbo after this morning’s play time. Mismatched pyjama tops and bottoms and bits of costume clutter the floor and drape across the couch and backs of chairs. It is an hour before noon and already he has changed his outfit four times or more.
For the time being, he wears a floor-length, royal blue velvet cloak edged in white fun-fur substituting for Ermine, and a velveteen crown of red and gold, adorned with plastic gemstones. Today he is “my prince” and I am “Queen Mumma".
He takes notice of the snow falling steadily and silently outside the windows that surround us, knitting a blanket of quiet over our world and delicately dressing the trees.
“It’s snowing! It’s snowing! It’s snowing!” It’s a song as much as an exclamation. His elation spills over and he bursts from his chair and bunny-hops on two feet to press his nose against the sliding glass door for a better view. He clasps his hands together and squeals. His face, only moments ago set with the stern look of concentration, spreads wide with an infectious grin that could light up the darkest room. His blue eyes shimmer with joy and wonder, jangling about with each jerk of his head in his erratic happy dance. It is impossible to be in his presence and not soak up some of what he embodies. His energy fills the room with the force of a hurricane.
I smile in response.
“It is snowing, Boo. We’ve been waiting, haven’t we?” I keep my voice deliberately calm, in contrast. I have learned how inextricably intertwined our energies are, how he feeds off mine and relies on me for his baseline.
“If we get this finished, we can go for a snowshoe on the trails by the dunes and maybe do some boot-skating on the lake, if it’s still frozen solid. Would that be fun?”
“YEAH, MUMMA!” he roars with punk-rock zeal.
I wait for him to sit back down beside me and direct him to take a slow, deep, Yoga-breath, to re-enter his body.
“Okay? Ready?” I confirm, once more employing my most soothing tone.
He steadies his voice to match mine and replies, “Yes, Mummy. Ready.”
“What comes after zed?” I encourage.
“I.” He’s pleased to remember.
“That’s right! Where is I on the keyboard? Can you see it?”
He resumes his hunched-over search, locates the ‘I’ and presses it with trepidation, unsure of himself, looking to me for reassurance.
“That’s it. Hooray!” I cheer. “What’s next?”
“R,” he replies, regaining his confidence, and repeating the process while I look on in silence, careful not to disrupt his focus. He exhales and his shoulders relax with the relief of completion.
“J-A-Z-I-R,” he declares, “Jazir.”
“You did it!” Now it’s me practically shouting, “You spelled your name on Mummy’s laptop!”
He beams at me, his face ablaze with pride at his accomplishment.
“That’s truly astounding, my love. Those letters are tiny!”
My eyes fill with tears and he turns toward me, wearing a look of concern, “What’s wrong, Mummy? Are you sad?” The sensitive little thing. Stoic as I may try to be, there is no hiding my emotion from him. His sensory awareness is tuned up to eleven.
“No.” I respond, “I’m not sad, sweet boy. I’m proud of you.” I pull him into me and squeeze him hard for a bit longer than he appreciates. He pushes me away gently and asks if we can take a rest now. He is exhausted by the effort. I’m a bit weary myself.
So have become our moments, strung together one by one like pearls, only exceedingly more precious. These are the gritty bits of progress we now recognize as gems.
It wasn’t always like this.
He wasn’t always like this.
I wasn’t always like this.
This is the aftermath of traumatic brain injury. This is us reestablishing neuropathways. This is us reshaping a sense of self and place in the world after the worst possible thing that could happen happened. This is what it did to him. What it did to me was something else altogether.
There is no pain greater than that of watching helplessly as your child slips away before your eyes. And, the thing about it is, generally speaking, the kid is the one who is the most okay with it all. It’s us, the parents, the mothers, who bear it the hardest.
We know what might have been.
The pivotal event for me, my “bombshell moment” occurred the afternoon I’d arrived to pick him up from Kindergarten and his cherub face gazed up and into mine, devoid of any recognition, and he spoke to say, “Hi, Who are you?”. The question hit me like a sucker-punch in the gut. My mind scrambled to understand the words I’d just heard. How is this possible? How can he not know it’s me? How can he see, but not see… me?
Visual Aphasia, it's called. I know that now.
In the moment, nothing made sense. Then other things began to. Things I hadn't before put together snapped into place like the pieces of a puzzle. I recalled so many tension-filled mornings getting ready for school, me urging him to put on his shoes so we wouldn’t be late and him staring directly at them asking, “Where are they, Mummy?” I recalled how I’d lost my patience and hollered, “THEY’RE RIGHT IN FRONT OF YOU! DO YOU THINK THIS IS CUTE? WE HAVE TO GO!”
He’d actually been unable to see them. I was stunned by the realization. I imagined how my kind, loving, five-year-old child must have felt while his mother shouted at him to put on shoes that, as far as he could tell, didn’t exist. Guilt sunk into the nucleus of my every cell and I doubled over with shame, horrified.
The accident had happened when he, age two and a half, astride his little push-and-ride car, had descended a flight of stairs in our home, head first, which lead us to the Emergency room for stitches and a needle full of "medicine" that would seep in and forever change the course of our lives. I hadn't authorized it. It was administered without my consent. There was little I could do about it after-the-fact.
By five and a half, his cognitive abilities and early development were in a slow and steady decline and had been, I then understood, the entire time, though most of it had gone undetected by me and the other adults around him. He had adapted to such a degree that many of his symptoms had remained invisible until they were too advanced for his brain to cope. By age eight, he had lost all but the most primitive of brain function.
He was dying.
I endured the pain the way only a woman can, pain that wracks a body with relentless expansion and contraction and renders it utterly changed: I gritted my teeth, I bore down, I did what needed to be done. Time and again I swallowed the guilt that rose up like bile in the back of my throat, hating myself for not having seen it sooner, hating myself more for not having prevented it to begin with. My job as a mother is to keep him safe. I had failed. I endured the agony of the loss of precious years of his childhood through one infuriating exchange after another with specialist after specialist, who shrugged and said, “Dunno”, and dismissed me like I was a crazy person when I pushed for more. It was around that time I broke down completely, sobbing from my very soul and pounding my fists into the carpet, pleading with a god I don't believe in, begging for answers and screaming in anguish like a crazy person, “How could you have possibly imagined me to be strong enough for this?”
Then, I remembered...
I’d been groomed for this.
I had been groomed by trauma. It had been a constant in my life. And that piece that had been beaten into me at my father’s hand when I myself was a child, hardened further when I was raped at fifteen, bullied throughout my teens, manipulated by a violent and abusive relationship in my twenties—the piece that had, over time, morphed into resilience and tenacity and rebellion and refusal to take no for an answer when no is not an acceptable answer, the thing that I had been criticized for, the thing that had gotten me into trouble with my mother, and teachers, and the law, the thing I’d spent so many years believing was the bad part of me—then found its purpose.
That unrelenting piece of me is the piece that wouldn’t quit until I found answers.
Jaz will never be what he might have been.
He will be more.
As for me, the trauma of my only child's near-death was like no other I'd experienced before. It stripped me down, layer by layer until all that was left was a shell. While he improved daily, I crumbled to bits, unable to reconcile the person I had become through the transmutation of that experience, with the person I’d been prior that revelatory moment in the kindergarten hallway. It felt as if the peeled-away layers of me had been collected in a heap, pulled and stretched to the breaking point, then spooled like thread and fed through the eye of a needle.
Still, I endured.
What choice was there?
With that thread of my former self, I have stitched the fragments of my being back together to become whole again, only in a different configuration. Bits from before remain, but the shape of me is different. I replaced what might have been with new and unexpected pieces found along the way. I stitched around the guilt and shame and added surrender and acceptance. I let go. I held on. I expanded. I became.
I became the self I’d been before the best of me had been beaten out.
I recognized me from a far-away place.
I eased back into myself as one eases into a too-hot bath, at first gasping at the intensity of the heat, then settling into the warm familiar comfort with relief. I struggle to remember the me from the time before the Kindergarten hallway.
It doesn’t really matter so much, I’ve learned.
He has shown me: now is all we get.
Now. This moment. Tiny as a grain of sand. One pearl on the strand.
This is life.
“You ready to go boot-skating, Boo?”
Written: February 14, 2017