“Always look up. For that’s where we find real strength”: RIP, Jaxon Buell

By Dave Andrusko

Once Brittany and I took our baby home, we stopped asking God to heal Jaxon, and we started thanking God for making him just the way he is. Now we see Jaxon as perfect.” — From “Don’t Blink,” by Brandon and Brittany Buell.

I remember thinking back a few years how I’d wished every attendee to every National Right to Life annual convention would’ve had the opportunity to hear Brandon Buell speak about his son, Jaxon.

Jaxon, as in “Jaxon Strong,” the name they gave to their Facebook page detailing that while their son (then a little over two) had been born with a brain just one fifth of the size of a typical brain (the technical term is microhydranencephaly), “We’re an ordinary family with an extraordinary son, and we’re doing our best with what we’ve been given.” As the saying goes, they became an Internet sensation with hundreds of thousands of followers. 

The Buell family, I suspect, never put it so bluntly, but Jaxon was living on borrowed time. But they were wise enough and devoted enough to live each and every day to the fullest.

Yesterday, we learned that Jaxon, now five, had passed away “very peacefully and comfortably” on April 1 in North Carolina, his parents said, according to A. Pawlowski of Today.

“He passed away in my arms and surrounded by his parents and family who were loving on him and providing comfort and endless hours of snuggles throughout his final days,” Mr. Buell, 35, told TODAY in an email. “Ultimately, Jaxon passed away from his body and organs shutting down, as is common with children like him. This had absolutely nothing to do with the COVID-19 virus, but was something we always knew from the beginning would likely happen. We just didn’t know when,” his father told Pawlowski. “Jaxon’s legacy is about his strength and his amazing sweet spirit. He truly made me, his mom, his family, and all who learned of his story better,” he said.

His dad added, “Jaxon recently entered into hospice care at home after showing signs of slowing down in the past year or so, and the family was preparing to say goodbye.”

In 2017, I had the privilege of reading the Buells’ fabulous book, “Don’t Blink.” They tell us in the Introduction, the book is written “to answer all the questions and comments we haven’t been able to respond to…and perhaps a few that haven’t been asked yet.”

Weaved through the book, from the first page to the last, is a gentle acknowledgement that while many will understand why they didn’t just “let Jaxon go,” many more probably won’t. After all, once an (incorrect) prenatal diagnosis of spinal bifida was made, doctors advised them repeatedly of the possibility of aborting. Then (with even more certainty) doctors flatly told them their son would die very, very soon after birth.

Very quickly the Buells faced a crossroads. They could stay mentally prepared for his death “or we could focus on his life while hoping and praying for the best.” They decided to “focus on the business of living.”

The book can only be understood through the lens of faith–the Buells are devout Christians–and by grasping their bedrock principle that every life matters and that Jaxon was not a “mistake.”

“Within a few weeks,” Mrs. Buell writes, “I began to see–and trust–that God had a purpose for Jaxon’s life. And if Jaxon died, God would have a reason for that, too. God loves those who bear His image, even the smallest and most helpless among us, and His purposes are often hidden from earthly eyes.”

For people who will find it a mystery why a couple would center their lives around a little boy with such severe limitations–in a word skeptics–this book offers many answers on many levels.

For example, near the beginning, they write, “Most of all we’re writing in the hope that our joy can splash from these pages into your life. We adore our son, and we celebrate him for being the marvel and inspiration he is.”

A little further in Brandon writes, “Brittany and I used to see God as the heavenly healer. Now we see him as the author of His perfect will.” Near the end, he concludes, “I don’t know what the future holds for us, and I haven’t spent a lot of time worrying about it.”

When I finished “Don’t Blink,” it occurred to me the book is actually the Buells ministering to us. The lessons they have learned (first and foremost “that God has a plan for his life, even if it’s one we never could have imagined ourselves”), they share with us.

For example, they went from being “needlessly busy to making every moment count for Jaxon.” Consequently, they seize and cherish every moment, remembering that “Sometimes we grow immune to the ordinary wonders of life.”

Here are two of my favorite pearls of wisdom. Brittany and Brandon don’t worry about milestones Jaxon hasn’t reached but the ones he has.

Avoid the what-ifs. “But the truth is, even if he didn’t have microhydraencephaly, we still wouldn’t have any guarantees. Life is a gift, but it’s an uncertain gift. So all we can do is embrace the beauty in the midst of the uncertainty, knowing that’s the best groundwork for a miracle.”

Near the end, and without being the least bit preachy, they summarize and recapitulate the lessons of Brandon, Brittany, and Jaxon we can apply to our own lives and our own difficulties.

“Life will no doubt throw you a curveball at some point, if it hasn’t already. When that time comes, we hope you’ll be able to find inspiration from Jaxon’s life. Trust your gut. Embrace uncertainty. Live the life you’ve been given, not the one you imagined. Know when it’s time to give and when it is time to receive. Celebrate the little things. Use your words carefully, recognizing the power they wield. Savor each day. Believe in miracles. Remember that you’re not alone in this. And always look up. For that’s where we find real strength.”