Tag Archives: special needs

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

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Pictographs

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You wouldn’t know it from the photographs,
moments chosen so they wouldn’t forget,
not to deceive. Corroborative images showing
that they smiled and laughed. Incontestable
evidence that despite assiduous heartache,
joy and hope burrowed in and fought
to regain solid purchase.

NaPoWriMo Day 18

Mothering

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She wished their lives
were filled with coconut covered
bunny cakes. That most days
were consumed with coloring
Easter eggs and running
on soccer fields. Mother/
daughter pedicures were
inked into the monthly
calendar. They all snuggled
up for Saturday movie nights.
Once a week, they hosted
a family game night. Everyone
helped prepare meals:
chopping, sautéing, stirring.
When any one of them hurt,
the others circled up, provided
comfort and encouragement.
They ate most every meal
at the same table at the same
time. She wished she could
spend all her time planning
adventures instead of scheduling
medical appointments, doling out
kisses rather than pills.

NaPoWriMo Day 11

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

Found Poem: One Text Today From My Daughter

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The. You. I love.

Sierra.
You are the best of all the Mom.

The new one
and only a small group in

The. You.
I love it

and I have no clue who they really are
the same thing over and over
a month or two
and three of us who we are

the only one of my friends to play the game is on my iPhone
is so much better now than ever before

I go back in time and money to get my money

on the way you can do
go home.

Sierra the best thing about it

but it doesn’t work on my iPhone

to be able
too many people have to be

 

Julie Ayers (& Sierra)
NaPoWriMo Day 29

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

A Thank You to Flynn

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You gave her more than flowers
when you slipped a corsage on her wrist

For tonight, she was any girl
as special, and no more special,
than every young woman who danced
and checked her phone
who smiled when she saw a familiar face
struggled to look like she was comfortable
walking in something other than tennis shoes
complained about the endless pictures
her parents snapped
but was secretly happy
there would be ample documentation

She was just the same
certain she’d never, ever forget tonight

 

Julie Ayers
NaPoWriMo Day 9