A lot can happen in 1 year … in pro wrestling and in life. It was one year ago today that I added a new member to my own personal family, when my son Brayden was born. While I always new I would have a baby boy who I would love unconditionally, I never knew that he would become my hero.
That word is used — and perhaps overused — so much in the realm of sports, including the arena of sports entertainment. John Cena in WWE, Peyton Manning in football, Michael Jordan in basketball (except for those of us who were fans of the 1990s Knicks).
I can honestly say that there is no one in my life who has ever inspired me more than Brayden, and while any parent will say that about their child or children, it really rings true for my wife and myself as well.
Just before he turned 6 months old, Brayden starting doing a motion where he was shrugging his shoulders and then dropping his head down. At first, we thought he might be having a form of reflux, but then he started doing it three or four times per day, even when he wasn’t eating. We immediately went to the neurologist — we had been there once before to make sure he was okay after noticing a couple of developmental delays a couple of months earlier — and after taking a look at the videos we took and confirming the diagnosis by monitoring his brain activity through something called an EEG — we were told that Brayden had a rare condition known as Infantile Spasms.
Infantile Spasms — IS for short — happens in only 1 of every 3,000 babies, and there are approximately 800 cases per year. It is a rare form of epilepsy that babies get usually between 6 months and 2 years old, and if left untreated IS can lead to severe brain damage, future seizure disorders, and other nasty manifestations.
Even if detected early, the only known causes of IS are ones that are very serious including brain damage and other conditions. The kicker is that because IS is so rare, there is not much research being done because the awareness and funding are not there.
When it comes to our IS diagnosis, we were very lucky when it comes to Brayden. The best day of my life is when the MRI for brain damage came back negative, meaning that he did not have one of the known causes. Instead, Brayden’s case is what they call idiopathic or cryptogenic, where he was treated for Infantile Spasms but they will never quite know why he had it in the first place. The treatment came in the form of a powerful hormone called ACTH, which was first injected into Brayden’s thighs in the hospital (alternating thighs each day), and was then continued at our home for two months. There is nothing more devastating than having to inject medication into your baby every single morning, knowing that there are serious side effects but that there was also no other way to treat his condition.
Again, and I can’t stress this enough — when it comes to Infantile Spasms, we were extremely lucky.
At 8 months old, Brayden had his last injection of ACTH – a medication that caused his cheeks to swell up massively due to the increased hunger it caused, as well as irritability. The worst part for us as parents was the emotional toll it took to not only administer the ACTH but to see Brayden miss other milestones due to the treatment that was needed. We could see how hard Brayden was trying to lift himself from the fog that the IS and the ACTH caused, and it was nearly soul-crushing to see our innocent beautiful baby boy unable to do the littlest things he wanted to do.
However, as hard as it was, when it came to the outside world — family members, friends, colleagues, early intervention specialists (he has weekly sessions of physical therapy, special education, vision therapy, and occupational therapy) — we put on our brave faces, sucked it up, stayed tough, and did everything we could to be there for our son, to advocate for his services, to celebrate HIS milestones (seriously FUCK preconceived notions of timetables), and to just EMBRACE Brayden’s fight against IS and ACTH.
Today, my baby boy turns 1. Even more importantly, he has been seizure free since his 6-month birthday, when we first found out the medication was working and the seizures stopped. Amazingly, he has been medication free since he was 8 months old, and over the past 4 months, while Brayden remains developmentally delayed in many areas, he has started to make progress.
Through it all, Brayden has been tough as nails, and he is a HAPPY boy whose smile lights up a room no matter where he goes.
We know we have a tough road ahead, as all IS babies do.
But regardless of the special needs that Brayden will have for a very long time, we are ready to fight the odds, to buck the trends, and to rise above it all.
If pro wrestling ever taught me anything from an allegorical standpoint, it’s that anything can and will happen, and it’s how you handle it that defines your character.
On behalf of myself, my wife, and my son, I say JUST BRING IT, as I know we will emerge from all of this stronger than ever.
Before I go, here’s a poem I wrote for Brayden during the toughest part of this journey:
I will not let them look at you sadly
and I know how you want it so badly
to look at the stars and grab with your hands
to do little boy things your mind commands
You will get there son, I can see your will
you’ll ride rollercoasters just for the thrill
we will chant and scream for the New York Mets
when they break our hearts we’ll have no regrets
Today grandpa held you close on the couch
and grandma fed you another fruit pouch
she calls you her peach as you beg for more
mommy lights up as she comes through the door
I read you Goodnight Moon just before bed
as you doze off tonight I dream ahead
Happy Birthday Brayden, my little warrior. We love you.
That’s all from me — CB.
To learn more about Infantile Spasms, check out the video below:
Tags: CB's Slant