Dad’s Heartfelt Message About Son Born With Missing Skull
September 28, 2015
In
almost every way, Jaxon Buell (above, in his father’s arms) is a
typical 13-month-old. He says “mama” and “dada,” wakes up smiling and
excited to start the day, and is starting to deal with the discomfort of
teething.
But something does set Jaxon, who lives in Florida, apart from other toddlers.
Jaxon Strong, as his mom and dad call him — a nod to this little guy’s resilience and courage — was born with a form of anencephaly, a rare neurological condition that means he is missing part of his brain and skull.
Jaxon Strong, as his mom and dad call him — a nod to this little guy’s resilience and courage — was born with a form of anencephaly, a rare neurological condition that means he is missing part of his brain and skull.
Jaxon’s father, Brandon Buell, took to Facebook on
Monday to respond to some critical comments his son’s story received
after it was widely shared on social media. “All we ever wanted was to
give Jaxon the happiest, most comfortable, and most fulfilling life
possible, because we know how precious his days are with us,” he wrote.
About 1 in 4,859
infants are born with anencephaly every year, and most die shortly
before birth. How the condition manifests varies. Jaxon has a brain
stem, which controls motor functioning, but he lacks a cerebral cortex, the “gray matter” of the brain that controls thought.
Even
so, Jaxon has surprised doctors by thriving and reaching the 13-month
mark, which makes his adoring, devoted parents extremely grateful.
Jaxon
and his mom, Brittany, just after his birth in August 2014. This brave,
blue-eyed boy has been defying the odds ever since. (Photo: Facebook)
Some
called Brandon and his wife, Brittany Buell, “selfish” and said they
should have aborted Jaxon when an ultrasound Brittany had during her
17th week of pregnancy revealed his condition.
“It’s
baffling to hear or see other people’s opinions on our baby that have
never met him, that somehow know how he thinks, how he acts, how he
feels, how much of what he does is voluntary or involuntary, how he is
always in pain, and that we are selfish parents for not choosing to have
an abortion, and for having a Facebook and a Go Fund Me page for him,” wrote Brandon.
The
GoFundMe page was set up by a former colleague of Brandon’s to help the
Buells with medical expenses, explained Brandon, as well to allow
Brittany to stay home with Jaxon, who does best when he’s cared for by
his mom.
Taking
care of his son can be tricky. Though medication has eased some of
Jaxon’s issues, wrote Brandon, his condition causes him to have regular
seizures and requires him to be fed through a stomach tube. But his
parents make it clear that he is “still developing, still learning,
still thriving.”
“When
we first learned there were concerns for Jax during the pregnancy, we
were given the options of carrying him to term or having an abortion
because there was the unknown issue,” wrote Brandon.
“Had
there been any suffering in the womb or a danger involved other than
Jaxon possibly not being able to live outside the womb because of the
concern for his head and brain, then we certainly would have had a
different discussion,” continued Brandon.
“Truthfully,
I will never understand how choosing to carry Jaxon and give him a
chance to survive could ever be considered ‘selfish,’” he added.
The
Buells’ Facebook post struck a chord, generating supportive feedback
from strangers touched by Brandon and Brittany’s devotion and parents of
special-needs kids who know what the Buells are going through.
And
while the Buells don’t know what the future holds for their son and are
used to the “looks, the stares, the glances” from people who are
startled by Jaxon’s unusual appearance, they are overjoyed to have Jaxon
in their lives. As Brandon wrote, “Yes, ‘selfishly,’ we love him and
never want to lose him.”
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