Tag Archives: children

A Beautiful, Ordinary Day

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Grass was cut, four loads of laundry washed,
folded and tucked away, the dog was walked,
bills paid, errands run, three pharmacies phoned,
rugs vacuumed, Deebot dismantled and cleaned
and reassembled but still stubbornly suction-free,
workout completed, dinner cooked,
kitchen tidied, and children chatted up.

No illnesses or injuries and trips
to the emergency room, no awful news,
no meltdowns, no car trouble, no impossible
gauntlet of a schedule to try and maneuver,
no wasted time in circular phone menus,
no unpleasant encounters, no regrettable
food or fashion choices made, no puppy
accidents to clean up, no doctor’s
appointments or lab work drawn,
not one single thing was broken
– physically or emotionally.

Day 19

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Combustibles

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The dry grass catches
flames rapidly shift
the waist-high field
tan to violent orange
a whirling spiral

The nearby playground
children chase
a game of tag
blue shirt, flowered dress
spinning across pebbles

On packed earth
they dance
side by side
heedless and easy
breathless and suffocating

Day 12

Just LIke You

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I was not born with preternatural patience, or designed
with a temperament well suited to long stays in hospitals,
or a back better tailored for the rigors of countless nights
spent in bedside sleep chairs. I didn’t have an aptitude
for biological or psychological sciences and, in fact, actively spent
my younger years recoiling from any unpleasant bodily fluids
produced by others — like stomach bile and blood, feces
and vomit. I couldn’t even manage to stare down my own
stitched up wounds after surgeries or wash away the dried blood
from healing incisions. I had no special affinity for the medical
fields and disliked chemistry class. I was the wanderer

in the woods. The girl writing poetry in the lilac hedge. I dreamed
of being a reporter and novelist, raising two children, named
Casey and Zenobia, and taking them backpacking in Central
America. They would be precocious free-thinkers, tiny
social activists who lived their convictions. They would challenge
me intellectually, morally, and emotionally. I would watch
them storm with confidence into their wide-open world.

But I don’t get to craft the storyline of my actual life.
This is no tidy fiction or poem to be worked out neatly. Swirls
of genes and forces of nature and economy hold sway. I get
what I am given when it comes to DNA and health. My choice
is how to lift and carry every interesting abundance offered.
Other than being gifted the privilege of parenting children
with special needs, there is nothing special about me.
My children are not my children because I was well suited
to meet their needs. I have learned on the job, like every parent,
how best to help my children be their best. Or at least to aim
for that mark. Time on task has taught me how to keep
my medically fragile child alive, how to function on regular,
daily doses of restricted sleep, how to hold down a job
outside of my home while being a full-time medical manager
for my high needs honeys, how to bake cakes and change g-tubes.

I am just like you.

Every day, I choose.

Day 10

Astro Was Too Difficult to Say

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I searched for you
wanted to bring you home
and into our hearts
give my children something I never had
help them learn about dogged devotion,
joy, attachment
the responsibility that inevitably comes with love

I didn’t expect your moose-iness
or that you’d be part muppet, part Barry White
or that my son would want to die if you did
that he would create a whole religion based
off of your patience and unwavering fidelity
that when the world became far too overwhelming
the only chance he had to regain peace
was waiting in the fur of your neck
and the deep quiet of your dark eyes

NaPoWriMo Day 30

Make It Count

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Every miserable day
and good one
near the water
or in a hospital
I try
I try
I try
My manta of gratitude
for functioning legs and serotonin uptake
quiet moments
and every last hug
for a soundtrack
and friendship
and good enough health
for those I love to make it to sunset
then sunrise
Repeat
Repeat
Repeat
Chaos and uncertainty
are too tight socks
pinching circulation
and leaving deep ruts
but limbs intact
if a tad blue
When I manage to roll them off
a more seamless state slowly returns
The heart relentless
doing its work
Pushing
Pushing
Pushing

NaPoWriMo Day 27

League Apart

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At 21,
I imagined her in college
or backpacking in Belize
working some 9-to-5 job that she loved or hated
so that she could earn enough money to cover her rent
and the cost of clubbing with her friends
making art and living in our basement
joining AmeriCorps and teaching children how to read
spending hours wandering in museums for inspiration
rarely leaving her room because she was so engrossed in creating new apps
or music
or poetry
or never being home because her social needs were so high that she was always out
in the world and we wished at least once a month she’d stop long enough to eat dinner with us
as a young, single, loving mother
on a boat in rough seas with Greenpeace protecting whales
married
researching grad school programs and stressing over paying back student loans
single and ambivalent about the status
obsessed with locating and meeting her birth parents
working in a tattoo parlor
preparing for medical school
skating in the Olympics
building a tiny house with her girlfriend near the edge of a lake next to the greenest forest
base jumping in every continent

All is less than optimal
it is not the future
that any parent imagines

I didn’t envision
the organ failure
or cancer
the speech therapy
and special education services
wrapping my arms around my tiny-in-frame but adult-in-age daughter
as she buried her head against my stomach
her body shaking
as we went to visit
the program she’ll enter
when she graduates from high school in June

My language is foreign to my peers
they struggle to understand and respond
mishear my hope and optimism
as acceptance or surrender
to this abrading future

Although I’ve learned to mine the joy and beauty
in the oddest of overlooked cracks
no dreams have been conceded
as I attempt to swallow with some grace
each of these real days

 

February 3, 2017
Julie Ayers

Twenty One Days

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You had a different name
penned on the card
affixed to your bassinet

I missed the first three weeks
when your life,
a fine thread, barely held

Those absent days
plagued
seemed endless as space

Impossibly small you
untethered by family love
adrift in vast wards

I didn’t hear your first cry
wrap you in my arms
and nuzzle you close

When your wet, weak lungs
made them intubate
I didn’t know there was a you

Those twenty one days

before we met
before I took my place
before I became your witness

before I acted as your voice
before I first saw and loved you
before I was your mother

Seemed an enormous failure
on my part
to find and protect you

A love feed irrationality
that’s finally begun to ebb slightly
after twenty one years

your mother

 

October 2016
Julie Ayers