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The True Citizen, Wednesday, December 29, 2021 — Page 13
Carleigh
supply to the brain, which
caused the stroke,” Jana ex
plains. A third stroke and two
brain surgeries followed, along
with significant developmental
delays. Carleigh was just 10
months old. “We had no idea
what to expect for the future,
but we began our long road
of physical, occupational and
speech therapy and prayed
and hoped for the best,” Jana
says. “At that point, I had to
quit my job and became a full
time mommy. Madi was three
and Carleigh was a very busy
baby with lots of therapies and
doctors’ appointments.”
T he family moved to
Waynesboro about a
year after all of Car-
leigh’s health issues started,
transitioned to new therapists
and soon began their relation
ship with The Center For New
Beginnings.
“They have been such a
blessing to our family,” Jana
says. “They came alongside
us as our advocates, educators
and friends. I could not imag
ine traveling this road without
them.”
As she talks about Carleigh’s
therapists and The Center, Jana
begins ticking off an inspir
ing list of just how much the
community has rallied behind
them over the years. Not only
did the staff and teachers at
Waynesboro Primary School
embrace Carleigh, but so did
the teachers of her sisters, Madi
and Lexie, with the latter’s
kindergarten teachers throwing
Carleigh a birthday party in
their classroom one year.
While the family was able to
meet most of Carleigh’s medi
cal/equipment needs on their
own with insurance, as she got
older, she naturally got heavier,
and by the age of 12, they
hoped to purchase an adaptive
van. A grant through a founda
tion in Atlanta called Fragile
Kids offered some assistance,
but only about a third of the
cost. That’s when a longtime
friend of Jana’s mother began
making decorative cookies and
selling them with the intention
of giving all her profits to the
O’Connors. Then two friends
of Jana’s stepped in with a Go-
FundMe account, which raised
the rest of the money needed
for the adaptation. “That was
when I realized exactly how
much our community, fam
ily, friends and even perfect
strangers cared for our family.
We were completely humbled
and in awe of the generosity
shown to us. It was such a huge
blessing.”
C arleigh’s last happy
day was spent with
her family at the
beach.
In June of this year, they
took a vacation to Anna Maria
Island, Fla. Carleigh was en
joying one of her favorite pas
times - sitting under her tent
with her sunglasses on, feeling
the breeze and listening to the
waves - then within hours was
in respiratory distress.
“We had to call an ambu
lance for the first time ever,
and she was intubated before
we even made it to the lo
cal hospital,” Jana recalls.
“She was stabilized and put
on a ventilator at the local
hospital and flown to nearby
John's Hopkins All Children's
Hospital in St. Petersburg by
helicopter. We were told after
some tests that she had a severe
case of pancreatitis, which she
had previously had in 2018 and
been hospitalized for. It was
incredibly rough on her then
and took her weeks to recover
from. Even with all that she'd
been through before, that was
the sickest she'd ever been.
This time it was much worse;
this was the first time she'd ever
been in respiratory distress and
had to be intubated. They told
us she was critical. And there
we were, seven hours from
home.”
B ecause of the care
that was needed for
Carleigh, the closest
they were able to get her to
home was to Egleston Chil
dren’s Hospital in Atlanta.
She’d been at All Children’s for
two weeks and already had an
emotional, possibly final visit
with her sisters and grandpar
ents. The doctors had delivered
the news that Carleigh’s pan
creas had suffered great dam
age and a CT scan of her brain
showed new areas of damage.
“They had no idea what her
new baseline or normal would
be, and we were consulting
with palliative care,” Jana says.
“Thankfully we were able to
stay with the Ronald McDon
ald House while there to have a
place to take turns getting some
sleep, take showers or just go
and cry and breath. She and I
were flown by Jet ICU while
she was on a ventilator and
kept in a drug-induced coma
with two nurses and a respira
tory therapist to Atlanta.”
While the list of health issues
continued to increase over the
following two months, Jana
and her husband, Chad, spent
the weekend with their girl,
loving and praying. “We met
with her palliative care team
that Monday and made the
incredibly difficult but selfless
decision that our beautiful, per
fect little girl had been through
enough and deserved to be able
to decide on her own whether
she wanted to continue to fight
or be with Jesus.” Over the next
week, the hospital allowed her
sisters and everyone who loved
her most to have some much
needed and wanted time with
her. The nurses made it pos
sible for Jana to squeeze into a
bed filled with tubes and wires
so she could sleep beside her
in those final days as she had
every day of her life prior to
this hospital stay. “On Sunday
afternoon, God answered my
prayers, and Carleigh let us
know in her own way that she
had had enough of the breath
ing tube; we knew it was time
for the doctors to remove it,”
Jana says. “The girls, Chad and
I each separately took some
time alone with her and then
we all climbed in bed with her
and held her and told her how
much we loved her as the doc
tors gave her the freedom to
choose what she wanted. As
the worship music played and
we held her close, our beauti
ful ray of sunshine went to be
with Jesus and got the perfect
healing she always deserved.”
T heir churchgoing,
Donald Duck-lov
ing, bracelet-shaking
fashionista with the big hair-
bows, monogrammed outfits
and ruffled pants passed away
Aug. 22,2021, leaving behind
a devasted family who was
determined to keep Carleigh’s
light shining on the world.
The love from their commu
nity continued to flow as well,
as it had done throughout Car
leigh’s life and her most recent,
final hospital stay. Friends,
family, teachers and neighbors
took care of Lexie on her 13th
birthday, provided Jana and
Chad with gift cards for meals
in the hospital, for groceries
and meals at home, fixed their
hot water heater.
“Waynesboro is such a close-
knit community that rallies
when one of their own is in
need,” Jana says. “Each and
every blessing goes back to
one incredibly special little
girl who touched the hearts and
lives of so many.”
When Carleigh’s journey
with moyamoya began, doctors
told Jana and Chad she might
not live to make it to her first
birthday. On that first birthday,
the couple decided to try to
give back to honor the miracle
God had given them.
“With the help of friends and
family, we have used her birth
days as an opportunity to give
back to the awesome groups
that have helped us, as well
as Make-A-Wish Foundation.
Carleigh was in the process of
getting her own wish but did
not get to see it fulfilled. Since
her passing, we have tried to
continue to honor her life by
doing things locally for CHOG
and providing meals and items
for our local Ronald McDonald
House Charities.”
This year on Carleigh’s
birthday, Nov. 2, the fam
ily returned to Atlanta where
they delivered blankets for
the PICU at Egleston as well
as wish-list items, gift cards
and brunch to the Ronald Mc
Donald House. They are also
funding a memorial scholar
ship in her name to hopefully
start this year with her sister
Madisyn’s graduating class. A
local business owner also made
more than 150 Christmas orna
ments of an angel Carleigh and
donated all the proceeds, which
ultimately provided gift cards
totaling nearly $2,000 to the
child life services at CHOG.
Also on Carleigh’s birthday
this year, while visiting her
grave, Jana split up between
the family the money they
would have spent on her for
Christmas, telling them their
gift to Carleigh was to use
the money to do something
for someone else and then to
write her a letter about it to
put in her stocking, with each
blessing being a secret until
Christmas Day.
“We took her stocking and
those letters to her grave first
thing on Christmas morning,
and each took a letter that we
did not write and read them out
loud to each other and to our
girl, even though I know she
was with each of us when we
passed along these blessings,”
Jana says.
Those who were blessed
through Carleigh’s Christmas
gift were two mothers deal
ing with hard times, seven
homeless people, two children
who may have had to spend
Christmas without their mama
and one very special guy work
ing the drive-thru at a local
restaurant.
“I know my girl was shining
so bright in each of these pre
cious moments, and it filled
each of our grieving hearts to
be able to be a part of giving
these blessings,” Jana says,
adding that it’s also been an
honor to give back to those
who have helped her family.
“But it is also so important to
our family to shine the light
of Jesus. It's because of Him
that our family was given the
incredible gift of Carleigh
and because of Him that we
have the promise to get to see
her again. Doing these things
has also helped our grieving
process tremendously and has
allowed us the opportunity to
stay connected to people who
became like family to us.”
C arleigh faced endless
obstacles throughout
her life: the two brain
surgeries, five eye surgeries
and a few other minor surger
ies; multiple hospital stays;
countless tests and doctors’ ap
pointments; hours of therapy.
Her strokes left her wheelchair
dependent, cortically blind and
feeding tube dependent. Yet,
as her mother says, not one of
those disabilities or struggles
defined who she was. “She was
the happiest, most loving and
fun little girl who stole hearts
with her big bright smile that
lit up her whole face and our
whole world. She was our fam
ily's absolute greatest joy. In
2018 she was given the Sheila
Goode award at the annual Bird
Dog Breakaway because of the
way that she ‘ran her race’ al
ways with grace, strength and a
smile on her face. There isn’t a
person in this community who
knew her that was not touched
by her life and her story.”
Though she was not physi
cally there this year for Christ
mas, Jana says Carleigh was in
every sunset, every shopping
trip, every spotted sunflower.
“She inspired our family
to love without limits, to be
more generous, to find beauty
in the ordinary and to be more
thankful for what we had. We
all said she was our Angel on
Earth. She taught me the depths
of a mother’s love and the
strength that comes with that.
She has taught me how to fully
rely on God. The things that
Chad, the girls and I all agree
that we witnessed in Carleigh
were bravery without limits,
superhuman strength and joy
in its purest form. She made it
impossible to have a bad day
in her presence. We never have
been and never will again be
loved like she loved us.”
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