When people
get pregnant they often say they’re expecting. In our case, Avalynn was the
unexpected, and often the unexplainable, the unpredictable, and the
unbelievable. Her doctors called her a medical mystery, but we called her our
miracle. Which is how we named her, Avalynn means desired life, or desired
miracle. Twice during my high risk pregnancy we thought we had lost Avalynn.
Once she didn’t show up on the ultrasounds at all, but ended up being very low
and very small for what was expected, and once I was bleeding so much they
suspected miscarriage. In both cases my daughter and I survived. There have been many other times in her life where, due to conditions
related to her abnormal skeleton and small lungs, she would turn purple, cold
and limp. We had many difficult days and nights where it was always about
keeping her alive. But knowing my daughter usually pulled through, rather than
calling these episodes what they were medically, I usually told Avalynn to stop
punking mommy, that she scared me. Nearly every time she pulled through she
would give me the biggest smiles and flirt with her coo’s. Sometimes she was
saying, “Gotch ya” others she was saying, “Yeah, that was a rough night, I’m
glad we made it.” And other times she simply said, “I love you, thank you, it’s
ok, I’m alright, and hello world.”
That was the thing that made
Avalynn who she was. She smiled from the very center of her being, and it
shined through even the toughest of times. She endured, and she endured
gracefully. She comforted and reassured. She was intelligent and funny. She was
curious and faithful. She was trusting, and a fighter. She smiled up until 4
days before she died. She struggled a lot then, was very tired and experienced
more discomfort than she had most of her life, there was a lot of titrating
medication, and holding her where she was most comfortable…. Where she could
hear my heartbeat. I asked Dr. Jones at one of his visits then, why she wasn’t
letting go when it was obviously time, and we had said our goodbyes and given
permission, etc. His answer will stay with me forever. He said, “Well If I was
a part of your family, I wouldn’t want to leave you either.”
We decided as a family early on
that we didn’t want to survive, we wanted to live. I felt very strongly we
should connect her to nature, and show our daughter that the world was more
than the machines, medications and hospitals that helped keep her alive. We
wanted to teach our daughter why it was worth living. We wanted to nurture her.
We went to the Houston zoo, to sylvan beach, swimming in Mima’s pool, crawfish
boil’s at Papa’s work, she went to church one week, visited the LDS temple in
Spring, she colored on my tablet with her feet, we read books to her, and
watched movies and documentaries about the universe, and even the week she died
we took her outside into the sun, where we laid down in the grass and flowers
with her and soaked it all in.
Avalynn had some favorite things,
she was a strong spirit, an old wise strong spirit. Her favorite songs included,
the ABC’s, but you had to jazz them up, Scarborough fair, Old Danny Boy, Jackson Five’s ABC, In your
Arms, by Meredith Andrews, I need thee Every Hour, Head Shoulders Knees and
Toes, This little piggy, Daddy’s Little Girl, Bob McFerrin Don’t Worry Be
Happy, and anything Bob Marly, or the piano guys. We had quiet sacred moments,
fun normal laughing baby moments, and amazing dancing parties as a family with
these songs.
She liked to put her feet in the
sand and grass. When we went to the beach she hadn’t woken up in almost two
days, but the moment we put her feet in the sand her eyes shot open and she
took it all in. Every experience was a blessing, I loved watching her explore
new things, endure the hard things, and connect with the world around her. She loved to pull her oxygen cannula and NG
tube off and out. She liked getting her nails done, and wearing new outfits and
head bands. That’s actually what inspired her last smile. She loved people more
than things, and communicating. She loved her daddy, from the very beginning.
When I was pregnant she would be cozy on one side, but when Cody got home and
sat or laid next to me and started talking Avalynn would woosh over in my
abdomen as fast as she could to cuddle with him. Honestly, at the time it made
me a little jealous. She loved his
kisses and his whistling. When we were in the hospital last week she would coo
sweetly when he whistled, but the moment he stopped she would grunt at him to
start up again, he would and her cooing would ensue. We were about to take a
shower, and decided to keep the door open and moved her by the doorway so she
could keep hearing him whistle. It was such a pleasure making her happy.
Avalynn’s favorite Disney
princess and movie was Mulan. I guess she connected with smiling through the
struggle, and fighting for what’s best for yourself and your family. She also
loved watching Studio C, a stand-up comedy show. She loved lights, and was
always drawn to look at them, which is probably what made tv so much fun.
She didn’t always look around
though. Avalynn was born not breathing, so a series of tests ensued, which is
how we learned of her conditions. She was immediately transferred to the NICU
at children’s memorial Hermann, and she and I spent our first and only 2.5 days
apart. It was torture for both of us. The day I was released from the hospital
after an emergency c-section, I had Cody take me home to change, and then
straight to Avalynn. The nurse there told me that Avalynn hadn’t opened her
eyes by herself once. That they checked to make sure her eyes could actually
open, and they turned off the lights to see if it was a light sensitivity
keeping her eyes closed. But as soon as Cody and I were there and held her tiny
hand, and started talking to her she opened her eyes, and looked in our
direction. The nurse said, “It’s like she waited till she had a reason to open
her eyes, she needed someone worth looking at. She needed her mom and dad.”
Avalynn was very curious about
the world around her, and she was a girly girl. Some of her favorite awake time
was when she was playing with her cousins. Alina and Addie especially loved to
hold her, feed her, change her diaper, try jewelry on and read to her. Addie
even started doing that before Avalynn was born. She would come up to me on the
couch, say, “I want to hold Avalynn”, and put her arm on my very pregnant belly
and cuddled in… then she’d say, “now Avalynn wants to watch Mickey Mouse Club
House.”. Addie would try to read to Avalynn but usually just interpreted what
the pictures in the book meant. It lead to some great story time. She also
brought her doll clothes, bows, and shoes up and would lay them on my abdomen
and switch outfits to play dress up with her baby cousin.
Avalynn loved playing with the
balls on her mama roo and had started hitting them to make them swing, and she
and I would swat them back and forth. She liked rattles, the light up music
cube mima and papa got her, and her all-time favorite were beads. It was the
only time I ever heard my daughter whine, complain, or object unrelated to
food. Her Occupational therapist Holly was introducing the beads after a few
minutes of tracking and grabbing them she was getting tired, so we were going
to give her a rest. When we took the beads from her hands Avalynn very loudly,
said “UH”. She was not happy to have them taken away, even if she was tired. We
let her keep them and then she took a nice long nap with her beads.
Avalynn earned some nick names
during her short life time. Her first two were Superwoman and Rexy, because she
liked to sleep with one arm up like superman, or her two hands in fists on her
chest like a t-rex. She was lovingly called Avalynn Waddelin, babbling, bumpkin, princess, beautiful, gorgeous, angel,
my precious, baby girl, little fighter and my baby cousin by her family. Her
most recent nickname though came from our last week with her when I called her
my little zombie baby. She had lost most of her color, had dark sunken eyes,
and was skinny from losing 3.5 lbs in 4 days. It was hard for all of us to
witness, but we comforted and loved her. And we helped each other heal by
talking about the truths of Christ’s gospel. That death was not the end, thanks
to the resurrection, that families are forever, and that she would have a
perfect little body soon. Then we coped with humor, like we usually tried to
do, and taught her about life after death in relation to the undead and
supernatural. We even watched an episode of iZombie with her. I remember a
nurse walked in and was surprised to find us watching a zombie show with our dying
baby.
The following day was when we
went outside, it was a sunny warm day with a little breeze. I had been inside
with Avalynn for most of her life. So when we were talking about going outside
we made jokes about how I was a vampire because the sun hurt, now that I was
never outside, and how Cody was Batman because he went to a normal job to come
home and be a hero to his girls. So somehow we ended up with our little family
consisting of Batman married to a Vampire with a zombie baby. We decided that
should be made into a movie.
Since it won’t be made into a
movie though, and Avalynn would have wanted to say goodbye, she helped me write
a poem, a letter, about her little life…
Dear Mom
& Dad,
I didn’t
want to leave you, I didn’t want to go.
I fought so
hard to stay here, I wanted you to know.
Surviving
wasn’t enough for us, you wanted me to live.
You took me
to the zoo and sea, and gave all you had to give.
My doctors
were baffled, they really thought outside the box,
They gave us
tools to care for me, I loved them lots and lots.
My nurses
were really brave, because I was so small.
They took
care of my parents too, and gave it all their all.
My therapists
were wonderful, they helped me play and eat.
They even
made me Velcro gloves, and purple boots for feet.
My cousins
were amazing, they loved to laugh out loud.
They made me
curious about the world, they made me really proud.
My aunts and
uncles were really fun, they liked to make me smile,
They tickled me from head to toe and dressed
me up in style.
My
grandparents reassured me, they said it’d be alright.
They
promised to care for mom and dad if I went into the light.
My Father in
Heaven loves me, He sent me here to you,
I’m now back
in His caring arms, and I know God’s plan is true.
I’ll
see you when I’m older, don’t forget to look for me.
I’m
watching over you from heaven, we'll be happy wait and see.
Love,
Avalynn
You all made an impact on my
daughter’s life, because she managed to capture you with her eyes, her joy, her
love… On the day of her passing I reflected on that and wrote another poem I
wanted to share.
Her eyes saw into eternity
They connected with the soul
They left an imprint on every
heart
No matter warm or cold
Her lips spoke purity
They filled the room with joy
They never spoke any ill words
Except one time with a toy
Her hands worked miracles
They comforted, encouraged, and
prayed
They changed the life of whom
they touched
Everywhere they laid
Her feet stood brave and tall
They inspired all,
Because they were works of art
Although now we lay her,
We lay her down to rest
She lives on and We live on
So let’s give life our best.
Avalynn and I lived the best we
could. We prepared and planned so we knew we would both be alright with the
separation that was coming. We even planned that as she passed away we would
listen to In Your Arms. The message of that song soothed our souls. I held her
knowing she belonged in my arms, but more than that, we belonged in God’s
loving embrace. We knew that eventually we would need to embrace the silence,
let our fears go, and relinquish every ounce of perceived control to God. That
is exactly what happened as she died in my arms.
I wanted to conclude my thoughts
by playing our song. In Your Arms, by Meredith Andrews.
We love you baby girl, we’ll live
the way you did, purely, trusting, joyful, long suffering, and enduring well…
we’ll see you soon.
