Tag Archives: cystinosis

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

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Got You

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It was not the usual way. There was not nine months to prepare, but rather three days.

When the adoption agency called and told me there was a baby girl, born, in the PICU, and did we want to be her parents?, that was the moment I became Sierra’s mom. Not later, after we saw her for the first time at the hospital. Not even after that when we had to give the adoption agency our final decision — were we willing to adopt this tiny baby whose life had started off with so many challenges? This baby girl who got pneumonia the day she was born, who couldn’t suck on a bottle without choking, who had received no prenatal care, whose birth mother was developmentally challenged, who the very-experienced-PICU-nurse told us had something seriously wrong with her even though tests were not yet identifying any major health issues, whose birth family had a history of significant medical and developmental challenges, whose birth father and ethnicity was listed as unknown.

I became a mom the moment I heard that voice on the phone say, “It’s a girl. She was born about two weeks ago.” Everything after that didn’t matter. Everything after that was just what happened next to our family. Yes, we agonized, in a way, over the decision for the first few days before we were allowed to sign the official paperwork and take Sierra home from the hospital. We were fearful, like any new parents, about the health and well-being of our newborn. But never once did I ever feel any desire to walk away from something I could have walked away from. We were not legally obligated at these early points to parent this child, certainly not at the inquiry call, or the follow up call once our pediatrician talked to the doctors caring for Sierra, or even once we first saw her and realized much of the information we’d been told on the phone was not accurate (such as the baby weighed 7 lbs at full-term birth; she was barely 7 lbs at three weeks when we first met her. She weighed 5 lbs when born). Yet, it didn’t matter. None of it mattered. She was my daughter from the moment I heard the words, “She’s born.” I loved this nameless, faceless, genetically unrelated, and still unknown baby fiercely, before I ever saw her hazel eyes and auburn hair.

I felt it. I felt motherhood. I felt it in the stillness that folded around me in my busy, noisy office where I took the call from the adoption agency that told me she was born. I knew it by the way my breath left my body and I didn’t need to draw more oxygen into my lungs for days – not until I finally got to see my baby and lift her up in my rock-steady hands and rest her sweet head on my shoulder. These hands knew preemies well, having helped my sister care for her preemie twins when I was a teenager. I saw my daughter, held my daughter, for the first time two days after I became her mother; took her home from the hospital three days after we met.

My husband and I had just three days and two nights to transition our lives and our home from childless to child-centered. We’d drive from Baltimore to Prince George’s Hospital every day to visit Sierra for as long as staff would let us stay — and stop at Babies R Us on the way home to buy as much infant gear as we could stuff into our car each trip: a crib, changing table, glider rocker and ottoman, onesies, rattles, bottles, diapers, booties, sleepers, stroller, sheets, pacifiers, diaper genie, car seat…

When we’d arrive home with the bounty each night, we’d spend the rest of the evening assembling everything and setting up the nursery. It was just us. We had no family in the state, no church home, and few available friends as we were relatively recent transplants to the area.

As we’d build the furniture, we’d turn over every medical opinion and report we’d heard that day about the health of our daughter. We’d spin it around and around like screws into misfitting pilot holes. The information was confusing and troubling, flat out frightening at times. This baby had yet to pass through our front door or rest her body on these newly-purchased giraffe-speckled crib sheets, but she couldn’t have been more our own. We agonized over her potential future, like any new parent who had been told their newborn may be at risk for… What? Some vaguely awful uncertainty. We worried for her, but I sought to adopt, in addition to my baby girl, my Grandma Jo’s advice to ‘not borrow trouble.’ So began this parenting journey of dealing with whatever this particular moment offered, reveling it or reviling it accordingly, but keeping the focus on right here, right now. (…there is no other place I’d rather be :))

My baby girl made me her mother the minute I knew she existed. Later, when I gave birth to a son, it was clear to me that love arrived no differently. Not with adoption. Not with birth. I’d always suspected that and claimed as much, but how could I really know, until I had experienced becoming a parent both ways? How your child comes into your life is irrelevant. That they do, is all that truly matters.

As to the rest, what happens, happens. Parents dream of bringing a healthy child into their home. Dream of the best possible outcome for the baby. Want the world for their child, and hope that the world will always be kind and generous and gracious to their offspring. Some get mostly that, others don’t. We are all fragile, imperfect beings. Babies arrive DNA already spun and as dads and moms we do your best to help them achieve the most they possibly can with that glorious, preset double helix.

We love them. We love them strand for astounding strand, regardless of how or when or why they arrived in the shelter of our arms and homes and hearts.

I love my daughter, who grows older and yet doesn’t grow up the same way most other children do. Happy 21st Gotcha Day to my remarkable Sierra Jule. Thank you for confirming for me love is love is love is love. That we eventually found each other is what matters. That I get the honor of being your mother…is everything.

 

October 23, 2016
Julie Ayers

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

Written

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we have our stories
written in indelible DNA
myelin sheath to lace
amino acid to crystal
bell curves on the bottom of tranquility
organs falling still, silent
cells that morph to blossom darkly

the other stories
we draw in soft pastels
only fix them by resolution
dangling by thin wire
in all their suspended coloration

the plastic hospital bassinet
sheltering wisp of white onsied baby girl
arms stretched upwards, reaching
our hands unequivocally catching

forceps liberating, cord cut,
blue eyes open, fingernails fine as rice paper
a boy all weary, bloodied
from the long struggle to here

heads that fit snug in collar-bones
hair smelling of baths of bubbles
Goodnight Moon and bunnies
and spoons of mush
sippy cups and squeak of swings

hospital hallways, sleep chairs, ERs,
ORs, intensive cares, incisions, syringes,
liquids, pills, capsules,
nights and nights and nights
full of tubing and machines
that pump and beep and drain
procedures that punish and save
and save
and save
and save

circus clowns spring-board launched
somersaulting over lines of bowed children
chemo-bald and nervously giggling
cotton candy in blistered mouths
that needed to relearn the shape of laughter

a call, a text, a visit, an email
a party invitation and picnic at the pool
a book, a glass, a poem, a concert
hats and sunscreen and trophies
and tribes

fires browning marshmallows
warming fronts and feelings
as backdrops for men thumbing guitars
vivid sparks of voices rising
into midnight blue

and saved
and saved
and saved
and saved

 

May 7, 2014
Julie Ayers

An Inner Bling

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Sia

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She takes 27 pills a day
knocks them back by the fistful
with a small sip of something
in an attempt to slow her cystinosis
drips drops in each eye once an hour
to beat back blindness

My daughter transmutes amino acid
to sparkling jewels
manufacturing cellular kaleidoscopes
but kidneys don’t like bling
the pancreas rejects adornment
eyes prefer tears to glitter

I want to harvest the crystals
collecting in her organs
the dazzle across her muscle tissue
spool a necklace and bracelets
matching earrings which reflect her light
a tiara to grace her auburn hair

All those unsuitable
beautiful stones
gathering in the soft places
needed to sustain and support life

her blood diamonds

April 4, 2013
Julie Ayers
NaPoWriMo #4