“Dad’s Heartfelt Message About Son Born with Missing Skull” originally appeared on Yahoo Parenting and was reprinted with permission.
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’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.
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 as 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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