My son Danny’s twenty-sixth birthday.  Developmental age, though, perhaps three months old.  Severely-disabled/medically-fragile since birth.  Diagnosis: undetermined genetic syndrome.

Seizure started his day early. I knew, startled awake to the alarm of his sat monitor signaling a rapid spike in heart rate.  By the time I’d hurried the eight steps from my bedroom into his, the convulsions were already subsiding, so just a short one.  Held one of his sweating hands, smoothed his hair with my other, whispered “shh” to him until the jerking gradually stopped altogether and the monitor silenced.  His usual deep, post-dictal sleep followed.  Checked his feeding tube connection, found it secure.  O2 level only low nineties, so suctioned his trach and got the level back up to baseline.  Made sure the oxygenator was at adequate volume and raised the head of his bed to help clear his airway.  Checked the wall clock: 4:41. No use trying for more sleep myself.  Went into the kitchen, started the coffee maker.

A 5:30 inhaler med and mid-morning wet diaper change.  Soon after, his 20-hour feed ended, so crushed more meds, gave those through his feeding tube, flushed afterwards, then started his breathing treatment with the vibrating vest and nebulizer.  Hoyer lifted into bath chair next, showered, back into bed, dressed, and completed his daily regimen of stretches to minimize atrophy.  Got his iPad set to familiar cartoons and twisted its extension cradle so it perched suspended in front of his face.  Reattached his sat monitor probe and oxygenator ring over his trach, turned on the baby monitor hanging from his bedrail tuned to the one on my belt, then headed out to the garage to do some woodworking.

Early afternoon, a dirty diaper change and new feed started, then got him into his wheelchair and hooked up to portable oxygen.  Tucked fresh bandana under his chin to catch drool and secretions, and took him for a walk through the neighborhood up to the library.  His left eye, like always, stared off at an angle.  Bumped over the cracks in the sidewalk and in and out of the freckled shadows that used to seem to please him, but which he hadn’t reacted to in a long, long time.  Only real indication of purpose, understanding, or meaning anymore was the movement of his lips to assist with mouth suctioning.  But nice weather, warm sun, cool breeze.  A birthday outing.  Typical stares from the few people we passed: flitting and uncomfortable from adults, something between dumb and horror struck from children.

Home again and back on the oxygenator, stretching its tubing to recline him in his wheelchair next to me on the shaded side porch as I read the book I’d checked out.  Early dinner while he finished another breathing treatment, then more meds, another diaper change, and Hoyer lifted onto the couch next to me.  Candle on the cupcake I’d made him flickered a bit in the gloaming while I sang him “Happy Birthday.”  Told him to make a wish, waited, then blew it out for him.  Used my fingertip to put a bit of lemon icing on his tongue.  Fundoplication surgery prevented feeding him by mouth, but I chanced this tiny, annual treat and watched him frown and pucker over the taste before it dissolved and I wiped out the residue with a tissue.

Adjusted him as best I could onto my lap like I was able to every night when he was younger.  Could only manage to get his legs over mine and his head against my chest.  He nuzzled and burrowed there like he used to, made his old, yawning motion, then turned his face up towards mine and smiled.  It only lasted seconds, but it was like a light opened up in me, an expanding wash of it.  Sudden awe, and with it, something like hope.  Couldn’t remember the last time he’d smiled like that; at least a decade, probably more.  Squeezed him to me, told him I loved him, that he was my best buddy.  Early evening light fell further.  Held him close, sort of rocked him, the oxygenator making its steady knock-hiss, him warm against me, my birthday boy, Danny.

William Cass has had over 275 short stories accepted for publication in a variety of literary magazines such as december, Briar Cliff Review, and Zone 3. He won writing contests at Terrain.org and The Examined Life Journal. A nominee for both Best Small Fictions and Best of the Net anthologies, he has also received three Pushcart Prize nominations. His first short story collection, Something Like Hope & Other Stories, was published by Wising Up Press in 2020, and a second collection is scheduled for release by the same press in early 2023. He lives in San Diego, California..