42. Small Words
A final note for 2023
Squeezing in a final post for the year! Hope your holidays brought you a bit of joy and lots of cookies. Remember, if you want this piece read to you (by me, not a computer) click on the audio above☝🏼 — Thanks!
In this space, I try to find the words to explain what it’s like.
It can seem like such a tiny thing, really. Nothing to add to a Christmas Card.
A flash of knowing, a smiling pause.
What it’s like, for example, to watch my 24-year-old son easily accept the pulse oximeter on his index finger from a new nurse at a new doctor’s office but then watch him become confused when she steps away for too long.
What it’s like to see how he reaches out his hand to her, stretching from his chair, trying to get her attention to remind her that this thing is still clamped on his finger, and when she doesn’t see him, what it’s like to hear him speak a single word that he has remembered — a word he’s heard his parents or providers use when he needs a sensory reset and they squeeze the tips of his fingers.
I don’t always know how to explain how surprising and refreshing it can be to watch my son find the words.
The nurse didn’t hear him say, “Pressure!” but I did, and it was a gift.
My son has so few words and ways of explaining. Most of his verbal attempts – without full sentences or the ability to re-state or to better articulate – get missed by the people around him.
What is it like to learn from my son’s provider that, after months of practicing how to order his own drink and cookie at our local coffee stand (and making great progress), a new barista who didn’t know that he’d want a straw and didn’t hear his soft request for one, barked at him for reaching around the plexiglass to help himself?
I don’t always know how to describe the protective bubble I want to wrap around my son so that he’ll never have to feel that frustration and embarrassment.
Oh but, what is it like to have providers on my son’s team who go to bat for him in public, defend him when he gets flustered, help him practice again and again, and consider him not just a client but a friend?
I don’t always have the words for that. “Gratitude” just doesn’t cut it.
Even those who know him best don’t always hear or understand him. Just a few days ago, I was standing at his sink, completely at a loss to follow his repeated command, “Wash!” as he gestured toward me from his seat at the table. Not until he sighed and stood and strode to the sink to reach around me and push the faucet to the right did I get it. And that one, I should have known.
We are often like toddler parents, proud of every new awareness, word or action, and also comparing notes and questioning what he’s asking for, why he’s limping, where he hurts, or what he’s thinking.
What is it like when we hear him speak an unusual, clear word – something purposeful and different from the predictable stream he repeats every day to tell us when he’s going to get a shower or make his bed or change his shirt or eat a pickle?
I want to tell you what it’s like to hear an unexpected word in the chain of my son’s usual narration when I’m cooking the same dinner I’ve prepared for him over and over. What it’s like to look up and see him holding out an indeed empty parmesan cheese canister and realize that he has never said the word “Empty” in this context before.
It must seem silly to describe such a mundane moment as a “delight.” But that’s what it’s like, this latent luxury of hearing my child’s words.
Yes, I am delighted to offer him a new parmesan (one of several condiments I buy in bulk for him). And, I am also a little sad that it will be awhile before he can tell me again that this Costco-sized container is empty.
Sometimes in my daily caregiving work, I forget the hunger I carry to know his mind and heart. Each time a new word or interaction bursts across our repetitive life, I find myself stretching out of my chair, reaching for him.
In this space, I try to find the words.
Perhaps this is only a mother’s “brag book” that people nod at politely. But as a group, my kind subscribers, you’ve doubled in size over the past year. That means a lot to me, and I hope you’ll stick around.
I can’t promise anything earth-shaking (except the rumblings caused by my son’s eternal pacing). This next year, I will definitely still fail to reach my personal goals, still wonder how to explain what I do and who he is, still enjoy coming home, and still fly along at our own slow pace. We’ll manage, come what may.
There may not be much new to say in 2024, but perhaps he and I will have a few small words to share.
Thanks for being here. Happy New Year to you and yours.
Aww, this is so sweet. Such joy to hear "empty!"
Happy New Year to you Robin, I for one am looking forward to all the words you share in 2024 🥰