With yesterday came another crushing blow; another diagnosis. This time it’s “moderate intellectual disability.” Another jumble of words that mean so little yet hurt so much. Another catch-all for us to hitch our wagons to in hopes of a new, open, undiscovered road of treatment or therapy or options unexplored. Another bump in the road of this endless year.
If I prayed, I would pray that this year would just end already. I would beg for some closure: to feel less heartbroken, to numb myself of my surroundings. If I prayed, that’s what I’d pray for.
Someone told me that “a broken heart is open to receive.” I sure hope that’s true. For me and for you, my son.
A Eulogy for the Boy I Never Had
I read you Oh Baby, the Places You’ll Go before you were born,
You liked it. I could tell.
We read it to you when you were here in the world and the way you stared, attentively, let us know that you remembered.
You slept through the night from eight weeks old. It was like a lottery win—a good sleeper. I felt guilty telling people when they asked me how many times you woke in the night that you didn’t.
You didn’t walk, not quickly. I felt the sting of inferiority, of parenting somehow already gone wrong when my friends posted videos of their 11-month-old walking. I held your hands as you stood, wobbling, on your feet and wondered when you would take your first steps.
And then you never spoke, not really.
You said a few words and made a few sounds here and there. I felt defensive when friends or parents in the park would look at you inquisitively. I felt vindicated when the doctors said boys developed later, that you’d develop on your own timeline.
When I learned you were a boy, I started to map out our future. Under no circumstances would you be allowed to watch or play hockey. Selfishly, I didn’t want to spend every weekend in Buffalo at some tournament and I didn’t want to spend every last dollar on skates.
I planned to show you my favourite things. To teach you how to dance. To read to you from my favourite books and plays. I hoped you’d be equal parts athletically and artistically inclined. I promised myself that I’d dust off some piano books, crack my knuckles, and show you how to play some scales. I committed to taking you places to see art, to trails to run, to mountains to climb, to places with music to hear.
I yearned for the day you started preschool. I wanted you to rush from the crowd of kids at the end of the day into my arms and tell me about your new friends and teachers and your favourite activities. But when that came and went and our communication was restricted to mono-syllabic prompts, the realization started to set in. Perhaps my boy, this boy, was different from the one I had imagined.
Still I craved the day you started junior kindergarten. I wanted to take you shopping to pick out new shoes and a backpack and a treat to comfort you for the coming transitions and to award you for your inevitable courage and resilience. I wanted to drop you off in your new classroom and squeeze you good-bye and walk away teary-eyed but hopeful. Nostalgic for my baby boy but excited for my school-aged kid. But when that came and went, and the meetings and therapy appointments and telephone calls and forms to fill out started to mount I knew, somehow, that the mourning was real. That the profound sadness had set in and wasn’t going anywhere.
The Little Boy I Never Had was the boy of my wildest imagination. He was sharp and witty and athletic and creative and perfect in every way. He was independent but cuddly. Well-mannered but ill-tempered when the mood struck. He was crushed by injustices and felt an inherent need to be and do good. He was an early reader and he insisted on choosing his own mismatched outfits. He marched to the beat of his own drum but always fell in line when he needed to.
But I never had that boy.
My boy is very different from the one I imagined I’d have. He’s nearly six and I know now, with almost certainty, that we may never have a conversation. I may never ask a complex question that gets a thoughtful answer. We may never read a play together. Or act out its scenes in the living room wearing hats we made with construction paper. He may never write a letter to Santa or ask for a special birthday gift. These concepts may never make sense to him – or, rather, may only be important to me.
We may never stand, hip to hip in the kitchen making a meal together. He may never drive a car. Play a sport. Walk alone to school.
What I know about the boy that I did have is that we will share quiet snuggles at inopportune times. We will go for long, quiet walks and cruise grocery store aisles together. We will ride the subway while he stares out the window. I will long to know what he is thinking, whether what we see is the same. We will always hold hands; crossing the street, walking to the car. His hand will always be 10 degrees warmer than mine. I will always see words and thoughts on the tip of his tongue. They may always remain there, never making their way into the air.
The Boy I Never Had should rest now. I only imagined him anyway.
Charlotte Schwartz is a Toronto-based mom of two boys, a full-time law clerk, part-time fitness instructor and baked-goods enthusiast. She also runs marathons to promote awareness and raise funds for Galactosemia research. This post originally appeared on her blog, Running on Borrowed Legs.
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