The boy who wasn't supposed to live.
He wasn’t supposed to live. Not long into their first pregnancy, Brandon and Brittany Buell were given the heartbreaking news that their son, whom they had already named Jaxon, had a rare condition called microhydranencephaly (meaning he was missing part of his skull and most of his brain) and that he would likely die in utero or shortly after birth.
If he did somehow survive, they were told he would suffer from severe neurological problems and would likely be deaf, blind, and unable to sit up, crawl or communicate. They were advised to terminate the pregnancy on numerous occasions, but the Buells refused, opting instead to choose life for Jaxon.
Jaxon recently celebrated his second birthday, and the Buells share what the little boy nobody expected to live is teaching the world about life.
There is always hope.
We are still in awe of the way one little baby has stirred so many people to love and compassion. Since the launch of the Jaxon Strong Facebook page, we’ve heard from thousands of people expressing their love and support for Jaxon. He has already touched more lives in more places than we ever will.
Before Jaxon was born, we expected our family to love him and to support us. We weren’t surprised when our friends and neighbors rallied around us with offers to help in various ways. But we have been astounded by the outpouring of love and affection from around the globe.
In a Focus on the Family broadcast, Brandon and Brittany Buell tell the story of their son Jaxon.
We’ve even received a couple of messages from people in the medical field. A gynecologist from another state wrote, “When we come across an ultrasound like yours, we are trained to suggest termination. But because of your son, I will stop doing that.‚” We could have talked for hours and not convinced this doctor to change her methods. But our son — just by being who he is — sparked a change in her heart.
Another online follower of Jaxon’s — a medical staff employee — wrote, “I want you to know that one of our patients is going through a similar situation, and she has been devastated by the news. I shared the story of your son with her, and for the first time in a long while, I saw her smile.‚”
Each "wasn't supposed to live" story is different.
While we know that not every baby with a brain disorder will survive for an extended time after birth, Jaxon’s story has spurred many parents not to terminate their pregnancies. They have carried those babies, held them, and loved them for days or hours — whatever time they were given. And those precious moments will always be part of their family’s history. Sometimes the miracle comes in the form of a supernatural healing, but other times it comes in the change that happens within us.
One of Jaxon’s most generous and frequent supporters is a man who is an atheist. We have differing opinions on many important topics, but those differences don’t stand in the way of our respect for one another — and his concern for Jaxon. Our lives have been enriched because Jaxon’s story touched this supporter’s heart.
Of all that has come out of Jaxon’s story so far, we are most thrilled by messages from people who tell us that he has given them hope in their own trials and circumstances. There is always a chance; there’s a purpose in everything, even when we can’t see it yet. Every day Jaxon wakes up and takes a breath, he gives hope to families in similar situations to ours — and to anyone who is struggling to overcome the odds.
Encouraging Words
Here is just a small sampling of the positive messages we receive every time we post an update on Jaxon’s progress:
Jaxon has definitely changed my reaction to people with challenges. Because of Jaxon, I am a kinder human being. I want this little boy to succeed so bad.
The whole world loves him — he’s an inspiration. Considering what’s going on in the world at the moment, he’s a breath of fresh air, and he brings a great big smile amid the heartache and tears. XO
I’m a grown man, and this fella brings me to my knees and to tears every time I see pictures of him. And I struggle for what? I want one-tenth of Jaxon’s strength. God bless you, Jaxon, and your parents, too!
Not everyone is positive, of course. Occasionally we hear from people who insist that microhydranencephaly is a fatal condition and that our son can’t hear, see, feel or experience emotions. Then we look over at our boy, who is making an impact on his world every day. And those folks think we’re the delusional ones …
We just smile and carry on.
We are not Pollyannas, and we accept our son’s condition. We are realists who choose to be optimistic.
We know that Jaxon will always be different from other children and that he may live a significantly shortened life. But we refuse to dwell on dark thoughts, and we actively look for the good things. He’s alive! That’s a miracle in itself. He can hear! That defied the brain scans and the doctors’ predictions. He can see! We’re not sure how well, but at the very least, he looks at us and smiles. He can coo and take steps and laugh! He has personality and a sense of humor. And he can love … oh, how he loves.
We have learned that every day we have a choice: We can get out of bed with a positive outlook or a negative one. We can rejoice over our baby or fret over him. We can focus on the compassion and support we receive from the online community, or we can fixate on those who refuse to value Jaxon as the precious soul he is.
We have decided to be positive. We have decided to smile, to welcome questions, and to let the world share our joy in Jaxon’s victories over his many challenges. We aren’t seeking fame (though we do hope Jaxon’s story spreads to everyone who needs an example of hope and courage). We don’t care if people know our faces or names, but we do care about giving a smile, a dose of encouragement, and most of all, hope.
Trust in God.
So how do we maintain a positive outlook in the midst of so many challenges? How can we keep hope alive when the world itself is roiling with turmoil?
We trust in God. And every day we spend some time focusing on Him through prayer and reading His Word. “Don’t copy the behavior and customs of this world,‚” the apostle Paul writes, “but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect‚” (Romans 12:2, NLT). We aren’t preachy when we post things online, and we don’t condemn anyone who holds opposing positions, but we are guided by this principle: “If someone asks about your Christian hope, always be ready to explain it‚” (1 Peter 3:15, NLT).
In a nutshell, we are positive because our hope rests in Jesus Christ.
While we appreciate medical research and skilled doctors, our hope doesn’t rest in medical professionals or the health care system. It doesn’t lie in genetic research or in some nameless fate. Our hope rests in God, who has prepared a life for us beyond this one and who gives us strength and patience and courage every day to walk the path He laid out for us.
An Update on Jaxon
Update: Jaxon passed away April 1, 2020. In an interview with Today, Jaxon’s father said, “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,”
To hear more stories of those who have navigated adverse diagnosis in pregnancy check out this year’s See Life event.
The post Jaxon: The Boy Who Wasn’t Supposed to Live appeared first on Focus on the Family.
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