Look at the Good Boy!
I wrote this a couple weeks ago. At this point we are closer to a new normal, but in order to keep you folks updated, it is worth posting.
Her wisps of hair-sprayed brown granny curls shook a bit as she pointed in our direction and said the words. “Look at that good little boy!” and turning to her grandson, “You need to sit still and behave like that good little boy.”
And there we sat, or at least the late 20’s versions of ourselves, pretending we didn’t hear. We pretended for what seemed like a very long hour. We were trembling somewhere deep in our souls while we sat in our booth at the seafood dinner, first vacation, new baby girl in my arms and our 3-year-old son strapped into his adaptive feeder seat.
She said it a dozen times if she said it once, pointing to our young boy every time. Our little boy who was clearly restrained and mute with what looks/looked like spastic quadriplegia as the exemplary little boy to her able bodied, and by all appearances – well behaved (at least by our standards) grandson.
We never said a word. I think we were just struggling to breathe.
A month ago our boy was injured in a new way, and a word that I’ve feared his whole life became a reality. Aspiration. Two weeks ago it was confirmed…and it was bad. The swallow study revealed that even tastes of food, sips of drinks could mean pneumonia.
And of all the surgeries, all the struggles, this is a blow right to my heart. Maybe because food is my love language, maybe just because it’s a mother’s first job – providing nourishment for her babe, maybe because I know too much about the roads kernicterus kids can travel. Maybe because HE knows. Maybe because my son is sad and fearful too. He’s growing up, and growing up with so very much on his plate.
This past week the pulmonologist walked in the room and immediately told me he was aspirating on his own spit.
Cough assist machine, suction machine and pulse oximeter are now new parts of our life.
The same day I sat in my husband’s appointment to discover that he needs shoulder surgery. Full rotator cuff tear and tearing of the labrum as well. December 29th, that adventure will begin.
We powered the DBS completely off for a week, and discovered a few things – 1 the DBS has really helped his body, big time, 2 – the swallowing didn’t get better with the thing off. The CT came back with no abnormalities, aside from the metahuman-like impressiveness of the cochlear implants and DBS in that noggin.
We don’t eat dinner as a family anymore. It’s too hard to see silent tears slip down his face.
We sneak food. We walk around the corner to take a sip of water.
Somewhere in the coffee aisle, I very nearly fell to pieces in the grocery store the week of thanksgiving. That would have been a pretty site – the ugly cry with howling for no apparent reason? But in my defense – one huge building full of food that my boy cannot even taste, sip…nothing, it was just too much in that moment.
Kernicterus rocked his senses in so many ways – hearing, vision, touch and now taste too. Smell is something more like torture to him now.
And my boy is getting better access to his computer with eye gaze, and we hear his frustration. His rightful angst comes out. And what do you say to the smart little boy who has had so much taken from him? What do you say?
I wonder if what the cover in Sunday School get’s anywhere near the mile-long ache that my boy is feeling.
No one has been able to explain it to me – the why, the how. But I know the when. October 19.
It happened on the day we had DBS programming. Significant changes to the voltage being delivered to my boy’s brain made his lip quiver all day long with a couple of other (in retrospect) stroke-like symptoms. It was only on those settings for a few hours but they did quite a number on his body.
For 2 weeks we watched, worried and brainstormed as he choked on nearly everything, including his own oral secretions. On a school field trip he even turned purple. We knew something was wrong and just kept asking.
On 11/4 it was revealed that my boy’s ability to move food and drink safely was badly altered. He aspirated everything. In every position, consistency, presentation. “Aspiration. Penetration. Aspiration.”
I heard those words for an hour and so did my boy. This wasn’t my first rodeo either. I’d been to 3-4 of these gigs with Blue and he always passed with flying colors. He’d been successfully eating and enjoying food for his whole life, supplementing with his feeding tube.
I suppose the majority of folks with his level of severe physical disability have some cognitive impairments. He has none. Blue has been the happiest kid I’ve ever know.
In these past weeks, sorrowful looks, tears, and lots of words like “can’t,” “sad,” “eat,” “drink,” “please,” “bad” keep playing on repeat. Now that the DBS is off, communication is much tougher. Not words. Just quivering lips and eyes full of sadness.
I read Joseph’s story with him tonight and his face grows long, lip out, stray tears falling. He hears the story. He knows the story. He feels the story more than any 11-year-old I know.
I’m not sure how much of the story I ever really heard as a kid. I’m not sure I gave much thought to the pit, the betrayal, the enslavement, the imprisonment – the long tormented years, the isolation. Maybe I only saw the virtues of the man, not the battles that got him there. Maybe the path to being exemplary, to being holy, to being a hero isn’t so painless. My boy is already a hero, I just pray that in this silent struggle to breathe, to swallow, to speak, to heal that he holds tight to the God of Joseph, David, Daniel…all of the lonely heros.
“Joseph was a good boy. Look at the good boy. Can’t you just sit still like him?”