When little Jaxon Buell was born with Microhydranencephaly, a rare condition that left him without most of his skull, his parents feared for the worst.
Knowing that this condition regularly claims the lives of thousands of babies in the US every year, Brandon and Brittany Buell were told to prepare for the worst.
And they did. They prepared for stillbirth, for neonatal death, for permanent disability and lifelong care. What they didn’t prepare for was Jaxon’s incredible bravery and strength of will.
One year from his birth – and one year longer than the doctors expected him to live – Jaxon is thriving. In the care of his doting parents, Jaxon lives a full, happy and precious life.
To celebrate his son’s birthday, and to reflect on the hardships they have overcome, Jaxon’s father, Brandon, has penned this beautiful heartfelt letter to his baby boy.
As I write this, my son is sleeping in the other room, comfortably, snoring just like I do, his sound machine playing the ocean waves tune over and over.
He’s back to sleeping through the night again. Ever since we came home from Boston, doing our best to return to our “normal” everyday life, we have watched Jaxon calm down, become comfortable again, and we have our happy son back.
Tomorrow, Jax will be 13 months old. It’s hard not to think about how this all started and where we are today. Most importantly, Jaxon is still here with us, still learning, still developing, still thriving. He’s back to smiling at us, always so happy in the morning after he wakes up and takes turns looking at both Mommy’s and Daddy’s face, seemingly as if he is so excited to start another day.
He is talking up a storm these days, truly teaching himself how to communicate with us in his own way, in his own language, and we actually understand it after learning with him for these 13 months.
He says “Mama”, and he says “Ah Ah” (Dadda), and “Addy” (Daddy). I love that.
Jaxon is simply that, Jaxon. He is so normal in so many ways. He is a baby who is dealing with teething, he cries when he’s hungry, he hurts from gas pains, he throws ups, he cries, he poops, he sleeps, he repeats.
For our family, it’s also normal to feed our baby by feeding tube. It’s normal to embrace him as he goes through his startle seizures multiple times a day. It’s normal to look at Jaxon and see a perfectly created boy and other babies truly do look weird and oversized to us.
And, it’s normal to take Jaxon in public and always feel the looks, the stares, and the glances, usually from people that don’t even realize that they’re doing it. But, we do have to venture out into the world sometimes, to refill the pantry, for me to go to work, and, yes, even occasionally grab a bite to eat because we didn’t have time to cook or just didn’t want to because it’s Friday!
There are so many things about Jaxon, our family, and his story that are completely misunderstood. 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.
If you research Jaxon’s diagnosis, Microhydranencephaly, you will read a 100% accurate description of what Jaxon has endured and what he goes through on a daily basis. It states that infants will go through a stage of severe neurological irritability and be inconsolable shortly before they turn one.
This phase sometimes claims these babies’ lives, and there were certainly moments when we felt like we were losing Jaxon. However, if a child can make it through this difficult time, they settle down, return to who they were and how they acted before it started, and there are cases of Microhydranencephaly children who have lived into their 30’s, have lived relatively normal lives, can learn to swim, and have and can use their senses, as well.
Yes, there will be difficulties and struggles and limitations, but they recognize their family, they learn to communicate, and Jaxon is certainly on his way in all of those aspects.
When we first learned there were concerns for Jax during the pregnancy, we were given the options of carrying him to term of having an abortion because there was the unknown issue.
No doctor could tell us exactly what was wrong or what to expect, but we did make sure to ask if Jaxon was in pain or was suffering, and we asked if there were any added risks for Brittany during the pregnancy or potentially at time of delivery. Since the answer to both questions was “no”, we never came close to considering abortion. Yes, we are Christians, and our faith has certainly been vital during this entire journey for our family, but we’re still realists. 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. However, that wasn’t the case, and it was our choice, and only our choice.
Jaxon was our baby, and we only had one shot to do everything we could for him. We would never choose to play God in that situation, when we had been given a child, and it was our job to give him a chance to live.
Truthfully, I will never understand how choosing to carry Jaxon and give him a chance to survive could ever be considered “selfish”. How is killing him immediately the better alternative, when no doctor could give us a reason to do so? When did choosing life become the selfish and condemned choice of this never-ending debate that we have somehow found ourselves in, simply for giving our baby a chance to live and not have to wonder “what if?” for the rest of our lives? The actual word that should be used in our situation is “sacrifice”.
Most will never know the joy and the struggles that we experience behind closed doors with Jaxon. My wife is the strongest woman I have ever met and with the biggest heart for others. She has sacrificed in her life long before Jaxon was ever a thought, but I have the most admiration for her with how she cares for Jaxon 24/7, and how she loves him unconditionally. She practices patience that most people, including me, simply can only long to have. She quit working over a year ago, and our Go Fund Me page was created by a former colleague of mine.
The sole purpose of Jaxon’s Go Fund Me page, still to this day, is to replace Brittany’s salary. We have always lived paycheck to paycheck, like the majority of people in this world, and having a family of three while paying normal monthly expenses, plus medical expenses, with only one salary is as easy to afford as it sounds. The longer we can afford to keep Brittany home with Jaxon, the longer he can remain stimulated from that priceless mother-to-son relationship that no one else can give, and is one of the main reasons we believe that Jaxon is still here with us and is doing as well as he is.
His Facebook page was also started by that same former colleague, both of these ideas coming from her as a person that genuinely loved us, loved Jaxon, and was simply doing her part to help support our family which was completely clueless and completely petrified for what may lie ahead. Now, here we are, just over a year later, and Jaxon’s Facebook page is approaching 100,000 likes. We have received support and have made connections with tens of thousands of people in dozens of countries because of our sweet and strong baby boy’s story.
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. Every doctor we’ve talked to is fascinated that Jaxon is here today, and they can no longer predict a prognosis, although we know the reality behind this better than anyone else, what Jaxon is up against, and that his life is already miraculous at this point.
In the same way that we flew to Boston, out of faith, and out of desperation, every choice we have ever made for Jaxon was for his life, for his happiness, and for his health. There are no accurate words to explain how we feel about this entire experience today.
We’re proud of Jaxon for being so strong.
We’re proud of his story and that it has inspired so many people.
We’re humbled by how many lives Jax has touched, and by the countless people, organizations, publications, and celebrities with large audiences that have either contacted us or have chosen to highlight and share his journey on their own.
We’ve only interviewed directly for less than 5 different sources to date, yet we will never know how many people have shared his story or have written their own version of an article about Jaxon. And, we will never understand how anyone could ever have a negative or hurtful comment to say about an innocent special needs child, but those poor souls are by far the minority, and they should see our inbox from the masses who love our son, our family, his story, and are inspired by him because he continues to fight and because we chose life in the first place.
It doesn’t actually matter to us who writes a story or who will want to interview us in the future, as long as they are sharing Jaxon’s story in a positive and beneficial way. We are still just that small family of three from small towns in both Florida and North Carolina. We are stunned at the level of how Jaxon’s story is known and shared today. The only way we’re changing as people is that we are stronger and better today because of Jaxon.
We don’t worry about the petty things that used to inconvenience us on a routine basis anymore. We’re now focused on Jaxon having the best treatment options available, keeping him comfortable, happy and healthy, and we’re focused on the next steps.
Although Jaxon’s story is currently being highlighted, he is not at all the only family going through difficult times. He is not the only special needs child, or the only one to be given this diagnosis.
In fact, we are extremely aware of the numerous families and the children who are going through something even more difficult and more severe. We have witnessed an example of exactly that every time we have been in the hospital with Jaxon.
However, we understand that Jaxon is here for a reason. Yes, “selfishly”, we love him and never want to lose him. Yet, we believe he was created perfectly, by design, and that his story would not only inspire others, but it would help other families in the future who will walk the same path that we have, who will start out just as clueless, just as scared, yet now have an experience to turn to for hope and for guidance.
We believe the medical world will also benefit from Jaxon’s story, from his rare neurological condition, and from his diagnosis, because we are certainly seeing firsthand how much there is still to learn about the human brain.
We plan to work with the top infant neurological teams in the country, if not the world, for all of these benefits, and we keep our focus as broad as we possibly can so that Jaxon’s story does not end with Jaxon, but so that he will truly leave behind a legacy because of who he is, what he goes through, and for the fight that he wakes up and keeps fighting every day.
There is real purpose here.
There is a simple ordinary family with an extraordinary son who are simply doing their best with what they’ve been given, but realizing the true importance and the miracle behind it.
We have never expected everyone to understand our family, our fight, our choices, our son, and his journey, and we can’t care about that. Jaxon’s life is too precious, but his impact is endless.
Everyone deserves a chance, and we are not on this earth to judge others or to go through life aimlessly and without purpose. We should all be so fortunate to make a difference, to make this world a better place than how we found it, and to seize the day.
No matter who you are or what you believe in, it’s clear that Jaxon’s tiny footprints will have a lasting impression on this world, and that he has already touched and inspired more lives in one year than most of us ever will in our lifetime.
For his life, I am better, I am blessed, I am grateful, and I am quite simply, one proud “Addy”.
I love you, son. Well done, big guy.
Today, The Weekly spoke to burn survivor and motivational speaker about what advice she wold have for tiny Jaxon, growing up.
“Hold you head high and be proud of the awesome person that you are! You’re unique and you’re special and NO ONE can take that away from you. Life is more about what you have then what you don’t have. Try to appreciate everything that life has given you – your family, your friends, your intelligence, your pets. Finally, surround yourself with genuine and kind people,” wrote Turia.
Visit Jaxon’s Go Fund Me page by clicking here.
To learn more about Microhydranencephaly, visit here.
To donate to a child neurology foundation, click here.
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