Tag Archives: children

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

finalization

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her foot bounced in time
to the music
as she laid in her stroller
earlier that day
we’d finalized her adoption
a judge in black robe
telling us our family was legal
and final
Baltimore ArtScape 1996
Robert Cray sang and played
and she was happy
as were we
now she dances
on the steps of the courthouse
where our family
first became a family
my musical child
now a woman
and I wonder
how two decades have passed
since I first held her
and knew what it was like
to love someone
so hard
that you forget
you need to breathe

 

Julie Ayers
NaPoWriMo Day 30

Apples and Girl Scout Cookies

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I’m not asking you to buy Girl Scout cookies
so my daughter’s troop can take that trip to DC
or buy a chocolate bar so my son’s softball team
can get new jerseys
purchase pizzas, or cookie dough, or wrapping paper, or candles
so the school can get a climbing wall
cut a check for the sports boosters
so the stadium can be replaced

These are all valuable and worthy things

What I’m asking is for you
to donate
so together we can try and save my daughter’s life

https://cystinosis.org/how-to-help/donate

 

Julie Ayers
NaPoWriMo Day 25 – Bonus/Alternative Poem

Hand Out

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I beg for donations and money
to help fund research into my daughter’s rare genetic disorder.
I find the asking agonizing,
embarrassing and rather humiliating.
Who wants to feel like they have to request help from other people?
Like everyone else, I want to be self-sufficient and care for my children.

I push down my pride and ask friends and acquaintances for favors:
-To perform at the fundraising event;
-To volunteer to work the concert;
-To donate goods or services.
My stomach knots with each request
and I fight feeling a profound sense of shame.

I remind myself I’m doing this to try and save my child’s life
and the lives of other people who live with her progressive disease.
Why should this task generate feelings any different than what I experience
as I do her day-and-night-in and day-and-night-out regular care —
dispensing medications,
tending her g-tube and bringing her to countless medical appointments?

I know, intellectually, that most people really don’t mind my asking,
this fundraising-for-charity-business being the most socially acceptable
form of begging.
If I can work up the courage to ask,
most people are more than willing to lend support —
sing, provide a keg, bake a cake…

Sometimes, I think of how painful it must be
to be truly out of options and out of luck and out on the street,
where asking for change could mean you see tomorrow or not.
Just like every injection you give yourself hurts,
even if you have to do it every day,
I bet that daily ask stings devastatingly deep.

—-

Hey, by the way, want to help? https://cystinosis.org/how-to-help/donate

Julie Ayers
NaPoWriMo Day 25