The Almost Moments
Warning… this is full of personal feelings from an autism support parent… and may feel borderline “whiny”. You can turn back now… it’s not too late.
Everyone was dressed.
That’s the part that keeps sticking in my throat.
The outfits were on. Hair mostly cooperated. Shoes were found. The tiny window of energy and regulation had been carved out of a day already heavy with expectation. Christmas pictures - nothing extravagant, nothing dramatic - just a small, ordinary thing I had asked for. Maybe 15 minutes… 20, tops. I can make that happen I help make it happen for anyone else.
And then… it unraveled.
Just like last year.
A meltdown. Big feelings. A nervous system overwhelmed beyond reason or logic. And just like that, the plans dissolved. Again.
Maybe tomorrow will work.
Maybe it won’t.
But today was a no.
What surprised me wasn’t the meltdown itself - I’ve learned to anticipate those - but the depth of my disappointment. The kind that feels disproportionate until you realize it isn’t really about pictures at all.
It’s about the almost moments.
The moments that nearly happen. The ones that get close enough to touch before they disappear. The moments you quietly hope for, plan gently around, ask for sparingly - because asking already feels like a risk.
I don’t ask for much. Not really.
Most days are built around everyone else’s needs. Their schedules, their capacities, their sensory limits, their emotional landscapes. I plan in advance. I lower expectations. I soften edges. I pivot. I absorb. I do the invisible work of regulation so others can exist more easily in the world.
So when I do ask for something - for a photo, a memory, a marker of normalcy - it carries more weight than it probably should.
And when it falls apart, if it falls apart, it doesn’t just feel disappointing.
It feels personal.
It taps into the quiet grief I don’t always name: the grief of things not being normal. Whatever “normal” means, Of life requiring more flexibility than I ever trained for. Of realizing that even the smallest joys often come with contingency plans and emotional cost.
Wanting things to be normal doesn’t mean I don’t love my child exactly as they are.
It means I’m human.
It means I sometimes wish ease didn’t feel like a luxury item.
It means I notice how often the things I look forward to are the first to be sacrificed.
There’s a particular loneliness in that.
Because from the outside, it just looks like “plans changing.” From the inside, it feels like another quiet reminder that I live in a constant state of adjustment. That even joy must be flexible. That even celebration has to be negotiable.
And still - I show up.
I hold my child through the storm. I choose compassion over urgency. I remind myself that nervous systems don’t misbehave; they communicate. I breathe through the loss of the moment I imagined and try not to resent the reality I’m given.
But today, I’m letting myself name it.
This is hard.
Not tragic. Not dramatic. Just hard.
And maybe tomorrow we’ll try again. Or maybe Christmas pictures will look different this year. Or maybe they won’t happen at all. Like last year.
What I am trying to remind myself in the midst is this: the worth of my effort isn’t canceled by a meltdown. The love I poured into the day doesn’t disappear because the camera never clicked.
Still, it’s okay to mourn the almost.
It’s okay to be tired of being resilient.
It’s okay to wish - just sometimes - that normal came a little easier.
