Set down my friends & you will hear
The midnight nebs we do revere
The pulsing PARIs thump the floor
Albuterol works magic more
A cough, a sneeze, but rare awake
Misty medicine breath intake
The final checks across the room
Re-fill compressors for the two’em
Meds run out, I make the switch
Mist back on & then neb rinse
Check respir-rate, sats & heart
Climb to loft, sleep-vigil start
4, 5 hours wait for beeps
Hoping none while 3some sleeps
Ever watchful of my peeps
That day when all your strength
Departs straight out the door
That day when kids still sick
No change from as before
You push & push & push
Most friends comment “You’re tough”
While running through your head
“I may not be enough”
I long for 5 hours sleep
More competent nurse help
An IV coffee, Starbucks please,
Push through again yourself.
Dear Distant Eyes Beyond Our Bowl:
We’re different, special, but stop patrol!
Your judgment hurts us more than too
Our lifestyle choices for health do.
Our lives are not desolate spans
With moat around our modest manse.
We bake, we play, we go to beaches.
We sing, we dance & Momma teaches.
We SKYPE. We see. We swing on swings.
We venture out in health or springs.
We visit family, play with pets,
Eat rest’rant salad, point out jets.
In winter: shovels, snowballs, sleds,
Skiing, snowforts, cozy beds.
Building, learning, having fun-
Our family life a VALID one.
View our year in picts below-
Maybe one day try & know
Your view is cloudy- narrow best-
STOP the judging- give it rest.
I dream of haircuts and dinners out
Of trips to amusement parks
And walking about
Of having a life beyond this small room
And friends for each too
Hotdogs at the ball field
Sweaty seats on the T
Dreaming of normal that ne’er may be
Sprained ankles from skates
Tapping my wrist when arrival home late
High school and homework and
Nebs & meds & feeding trials
Greetings, hugs & beautiful smiles
Play & read & interact
Teach & learn, health status track
Bathe & complete trach care/change
GTube placement check, rearrange
Mid-day food may take so long
Mid-afternoon stretch & dance to song
Health assessment again at least
Add on treatments to stay “the beast”
Oops! Snack’s late! Run to kitchen.
Calories tracked, must get all in.
BARELY time to do much else
Place the toys back on the shelf,
Craft some dinner while they draw
Food refusal daily flaw
Meds, brush teeth, toilet rotation
Return to beds for neb medications
Pure exhaustion & anxiety spikes
Try to adjust things to his exact likes
Then 3 pass out, sleeping sound
While my continued work abound
Feed up, nebs clean, then the dishes
Wish all was done with goodnight kisses
ALARM!! Move child. Adjust the lines.
Add oxygen? Lung sounds? Write down finds.
A few repetitions of the same theme
Tiredness sets in but can’t yet dream
Feed stage 2 prep, change it over
Observe for delivery, let out ‘rover’
Wash the prep tools, counters, table
Try to nap hours while you’re able.
Every few hours check all of them
Awaken morning to begin again.
I’m not the Mom I want to be
I live a washed up shell of me
Meltdown, treatments, medical test,
No time a weary Mom can rest
We rush about, see this one, that,
Parenting in a Chauffeur’s hat
Trach & Autism behavior peak
Count 1000 before I speak
Restraint, a treatment, then some more
While no support rings at the door
The love I have is ne’er enough
Complex medical kids are tough
Enjoyment, solace, that I wish
Will it never come for this?