Our Usual Booth at the Hospital

He asked if our usual booth was open.

Our usual booth.

At the fucking hospital.

It hit me harder than it should have — that tiny sentence from a kid who’s spent more hours in medical buildings than playgrounds. Most parents have memories of their children flying down slides, pumping their legs on swings, screaming with joy from the monkey bars.

I have some of those too.

But mostly?

I have memories of Children’s Hospital of Pittsburgh — CHP — the halls, the elevators, the cold exam tables, the smell of sanitizer, and that stupid booth in the cafeteria that somehow became ours.

A couple weeks ago we were there for his iron infusion — yay, someone finally listened — and afterward we grabbed lunch. He scanned the room like a regular. Like someone who knows the landscape.

“Is our booth open?”

That’s when you realize your kid’s childhood hasn’t looked anything like the brochures. We aren’t a family who knows the best parks in the city — we’re a family who knows which parking lot will be full by 10 a.m. and which radiology tech is gentle with anxious kids. I also know how to measure for cervical instability and what “low-lying cerebellar tonsils” look like. I know the difference between “urgent” and “we need to go now.” I know hospitals the way other parents know PTA meetings.

Funny how life shifts like that.

It didn’t start with cervical instability and infusion schedules. It started quietly — so quietly I didn’t even realize I was being handed the first puzzle pieces.

He never waved.
Never ran to greet anyone.
Someone walked through the front door and he ran the other way.

I told myself he was shy — I was shy too, right? I hid behind my mom, avoided eye contact, shrugged away from hellos. It made sense. I wanted it to make sense.

He used to make these elaborate piles — mountains really — right in the middle of the living room. Just… things. All the things he could find. Stacked taller than him. He wasn't even two. It was strange in that hard-to-describe way where your stomach knows before your brain does.

And the sleep.

Jesus. The sleep.

Parents say “my kid never slept,” but he truly didn’t. Three a.m. bouncing on the couch. Four a.m. bouncing down the stairs. Five a.m. curled into his “nest” of pillows like some exhausted woodland creature who gave up on human expectations entirely.

Actually, he started nesting at nine months.

Nine. Months.

Most babies were pulling up on furniture or crawling toward toys. He was building tiny circular pillow forts, sinking into them like they were the only place his nervous system felt safe. Looking back now, those photos — the joy, the calm, the way he melted into those cushions — were the earliest signs. Sensory seeking long before anyone used that word around us.

But back then? It was just “cute.”

We didn’t know we were already living inside Chapter One.

Then the pain started.
His legs.
His back.
Breathlessness.

Stomach pain, bathroom issues, staring spells — all the little red flags I tried to explain away because the alternative was too big to think about.

So began the specialist parade.

Pulmonology, gastroenterology, neurology.
Neurosurgery, ophthalmology, audiology.
Speech, OT, PT.
PM&R.
Every -ology on the map.

I lived in waiting rooms. I repeated the same history so many times I could recite it backwards. I learned how to speak medical without ever wanting to.

And in the middle of all that chaos, there was Lauren.

His PT.

Top notch. One of those rare humans who just gets it. I cried the day she left for another job. Not the dignified kind of crying — the ugly, heaving kind. It felt like losing a lifeline.

Because he is… hard.

Not bad-hard.
Just his-way-or-no-way hard.
You cannot make him do shit he doesn’t want to do.

And she never tried to force him. She met him where he lived.
She beat up imaginary bad guys with him.
Turned stretches into boss battles.
Made gait training feel like leveling up.
She joined his world instead of dragging him into ours.

And the funniest part?

He never once remembered her name.

Three years — maybe? It’s a blur — of her fighting pretend villains in the soft foam gym, and she was always just “that girl” or “the PT lady” to him. Kids are wild like that.

Then more tests.
More specialists.
More acronyms — EDS, dysautonomia, POTS, MCAS.

COVID four times. (But that's another whole blog.)
ER visits I stopped counting.

Wheelchairs, AFOs, SMOs.
Infusions.
Lab draws.
MRI's.
CT scans.

Books of medical records stacked taller than his old living room piles.
And through all of it, that booth in the hospital cafeteria became “ours.”

I don’t know when the shift happened — when CHP stopped being the scary place and became our second home. When my life became parking garages, radiology reports, appointment portals, and advocating until my voice cracked.

But here we are.

And maybe this is why I’m writing.

Because there are so many parents in these trenches — the lonely, exhausting, complicated trenches — and most of us are too tired to tell the story. Too tired to explain how grief and love and fear and dark humor all mix together into something you can’t name.

So maybe this is me naming it.
Maybe this is me saying the part out loud:

This is hard.
This is lonely.
This is not what I imagined.
But this is our life — and our booth is open.

If this hit you today, you can join me in the trenches — my weekly letter is where I share the moments between the moments.