Tag Archives: child

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

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The Unhappiest Place on Earth: Disney’s New Disability Policy

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Slumped in a wheelchair, I pushed my 11-year-old daughter through the park to see Mickey Mouse, exhausted but resolute. We’d set her dialysis machine up in the hotel room the previous night and slept fitfully as it cycled the fluid in and out of her body in an effort to filter the impurities that her dead kidneys could no longer manage. She was in kidney failure following a battle with lymphoma that had been discovered in her lungs when she was ten. Her heart had failed along with the kidney. She couldn’t walk from the car into the grocery store easily, let alone through the Magic Kingdom. She tired so easily, got out of breath. But she wanted to go to Disney World, so that was where we were going to take her. And we could do this for her, for this child who had just spent a year-and-a-half in and out of the hospital, undergoing chemo and surgeries, enduring months of daily dialysis, because Disney had an excellent program providing accommodations for people with disabilities.

We knew this program well because when our daughter was a wee six-year-old, she’d been granted a Make-A-Wish trip, the first time she was in kidney failure. She has a rare and progressive genetic disorder that destroys organs and tissue over time. Before her father donated his kidney to her then (his kidney, that she lost during treatment for cancer four years later), our girl asked for her wish, and was granted a memorable week at Give Kids the World, a special village in Florida where Wish Kids can stay and are provided with passes to all of central Florida’s major theme parks.

There are things about living with disabilities, chronic or acute illness or disease that might not be apparent to most people. Our lives are regimented by medication or procedure schedules. Those things may need to happen in private or even require sterile method to be followed. The person who has the challenge often battles intense issues with fatigue, his or her little body having to work so hard to do things the rest of us do effortless. Draw in air to our lungs. Push it out. Our strong hearts pumping blood all the way up to the tops of our heads and the soles of our feet. When we go to Disney, we might be able to manage a few hours in the park before our child is so overcome with fatigue it becomes unsafe. And for us, our daughter doesn’t sweat properly, so extended exposure to the heat becomes a danger in itself.

Being able to bypass long lines and enter rides more quickly meant my child actually got to experience more than one, or possibly two, attractions at Disney during a day. Our tickets cost the same as everyone else’s tickets, but our child’s body does not permit our family to enter the park at opening and leave when it closes so that we can see and do and experience and make lots of wonderful memories. We need to move through rather quickly and leave after a far too brief stay. Go back to the hotel room. Run her through a manual pass of dialysis. Give meds. Let her rest and sleep.

Sure, we could stay home. Not take this type of trip or gamble this way. We could let her live her life out in a series of hospital rooms, her bedroom, and classroom when she’s able to get to school. That is not much of a life for a child who loves everyone and everything and lights up a room when she explodes into it. That is not much of a life for any child or anyone.

Some people have abused the disability accommodation system at the Disney parks, and abused it badly. Because of their thoughtless and selfish actions, Disney has decided to dramatically alter their disability program. What they are now offering instead would have meant our family could still only manage to visit one or two attractions during a visit. I wonder what this will mean to all the children sent to the Give Kids the World Village on their Make-A-Wish trips? The grounds of the village are filled with small, sweet bald heads, kids in wheelchairs, painfully thin kids wasted by chemo or disease, puffed up children from steroids. They are children who have gotten sick, but they are children and want to still do what children do. They want silly and exciting and fun and good-scary, the kind of scary that doesn’t eat up your cells or cause parts of your body to be cut off or out. The family in the condo next to ours at Give Kids the World was on their goodbye trip with their daughter. There was nothing else to be done for the tumor destroying the brain tissue of that beautiful seven-year-old. Mom, grandma, and little sister were at Disney with her to see her smile and fix those final memories of a happy time firmly in their minds before they had to stand at her bedside and watch her die.

Just the other day, my daughter, who is about to turn 18 this week, turned to me and said, “Can we go back to Disney?” My daughter, who has fought for life from her first breath and valiantly battled every horrible medical nightmare thrown at her so far, who continues to live with a disease which now appears to be shutting down her pancreas and will not stop ravaging her ever — unless we are fortunate enough that some cure is found, and found soon — wants to go back to the happiest place on earth. What do I tell her?

September 2013
Julie Ayers

Broken

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I’m empty of words today
that might bring others
pleasure or comfort

A flurry of petals
falling from blooming trees
on grass gone suddenly lush

A sky so blue
set off against the bursting green
of every waking tree

Things that typically
entice me to happy
refuse solid purchase

Instead I am a vessel
that needs replenishing
after hours spent sitting

on hospital chairs
talking to more doctors
about things that can never be

mended

April 25, 2013
Julie Ayers
NaPoWriMo #25

Genesis of Coffee Aversion

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Rolled flat by a Dunbar Armored transport,
her blood pools with the non-fat, triple shot, mocha — double whip
that seconds before had been cupped in her imperfectly manicured fingers.

She’d spent much of the pre-dawn hours
in Reverse Warrior, Half Moon, and Downward Dog.

Cell phone in reach on the double-sink, ash, vanity,
she’d tweeted with frustration and self-deprecating humor
about a blemish emerging on her chin.

Cellulite nearly indistinguishable through her yoga pants
and breathable fabric, aqua and pink, sports top with the built-in bra,
she’d slipped on her flip-flops and drove to Starbucks
after dropping off the promised princess cupcakes at her daughter’s school.

Here, in front of the Game Stop,
witnessed by the child walking out the door of Cold Stone Creamery
whose tongue remains extended, fixed, toward his cookies-and-cream-with-extra-cookies cone,
she dies,
smiling.

© Julie Ayers
April 2012 – NaPoWriMo 14

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