Invisible Burdens

Brayden and Landon.jpg

“What do you fear, lady?” He asked.  “A cage,” she said, “To stay behind bars, until use and old age accept them, and all chance of doing great deeds is gone beyond recall or desire.”

-J.R.R. Tolkien, Lord of The Rings

 

Fear.

Every day we live with the fear that we were too lucky, that the scariest parts of being the parents of a stroke survivor weren’t really over.  Sometimes I just stare at him until he gets a shy smile and asks me "what!" as only a seven-year-old can.

When my son Brayden was 2 years old, he had a stroke in the lower right quadrant of his tiny brain.   Meagan and Brayden had been visiting her parents when I received a phone call that Brayden was having a hard time grabbing stuff with his left hand, and had been drooling nonstop.

I knew it was nothing.  I was the tough parent who hadn't been to the doctor in years.  I had to be missing a limb to get me to make an appointment.

We discussed it and made a decision to wait until the next day to take him in.  Fear had begun to creep in on the edges of my thoughts when my brother in law, who is a firefighter, said it sounded like the tell-tale signs of a stroke.

We rushed him to the local emergency room, and were relieved when we were told with confidence by the doctor that kids don't have strokes, and he probably hurt his hand.  We left with instructions to give it a day or two on amoxicillin for his sinus infection (the doctor deduced it must be causing the drooling) and to take him back in if he doesn't improve.

As we drove home that night, our internal parental sirens were wailing uncontrollably, and we knew something wasn’t right.  Meagan took him to the local Children's Hospital since she arrived first, while I rushed home and sat in my living room waiting for the results on the CT scan the hospital had ordered.  They were not flippant and unconcerned as the other doctor had been.

I will never forget that night for the rest of my life.  Meagan called, hysteria barely contained, as she told me with a shaky voice that they saw something on the CT, and were transferring him to Seattle Children's Hospital.  My best friend Kyle had been waiting with me at the house, and he held me while I cried uncontrollably for at least five minutes.  My mind was on overdrive and a new thought found purchase and wouldn't let go. 

My son's life was in real danger.  What did they see?  A tumor?  A brain bleed?

I jumped in my truck and raced to the hospital where they had ordered an MRI to find out additional information.  On the way, I received another call from Meagan, his iron was dangerously low and they were considering a blood transfusion.

My baby boy was sick.  Really sick.

The MRI results came back and the doctors sat us down to give us the news.  A stroke?  He’s two.  For whatever reason, I can remember staring at the clock in the doctor’s office.  It was a standard clock, with the seconds ticking by.  I wished so hard for that clock to stop, and to reverse time before this nightmare had taken hold.  But it continued out its measured ticks as time marched on, forcing me to address the problem at hand.

We were there for nearly a week meeting with some of the best doctors I've ever met.  We would meet with a team of seven (SEVEN!) Neurologists while they broke down everything for us.  He was diagnosed with Factor 2 Prothrombin genetic mutation.  This is essentially a clotting disorder.  Your body normally will tell the platelets to stop building a clot.  Factor 2 causes him to turn off the process just a little later, which causes a clot to enter the blood stream and be swept away.  The human body is an amazing machine, and has plenty of safeguards to filter out things such as this.  But one little clot got through them all, and despite the miniscule odds, gave him a stroke.

After some genetic testing, it turns out the Factor 2 gene came from me.

He was so small, and so fragile.  I held him time and time again as we drew blood or inserted a catheter.  My wife and I took strength in each other, and felt helpless as our small boy lay sleeping in her arms.

Later that week, we met with Dr. Ameli-Lafond, one of the premier experts on pediatric stroke, and she gave us an outlook that sparked hope within us.  She expected a near full recovery of all functions, and from the tests they'd run at the hospital, didn't see any immediate neurological limitations, but we would need to continue to monitor him.

So here we sit, nearly six years later.  Fear lives permanently within me, though it's boxed neatly in a corner.  A shadow in a well-lit room.  The only reason I'm able to contain that fear is because of the strength Brayden has shown.

He's had to take Iron daily for four years, along with multiple blood draws, a few checkup MRI's, and a dietary plan as we continue to try and chase down his anemia issue.

Despite that, Brayden has done nothing but excelled at sports, shown above average aptitude for academics, and inherited an exceptional sense of humor and empathy from his mom.  He doesn't realize the extent with which life has thrown him a curve.  That strength can't be taught, only earned.

His strength has been forged through trials he's experienced that many adults would fold under.  His fire red hair a testament to his will.  He's the reason the fear stays at bay.  He is my first-born son.

He is my Warrior.

 

 

I wrote the above piece a few years ago for a submission to the Pediatric Stroke Warriors (they are a phenomenal group—and if you’ve got money burning a hole in your pocket, give them some).  Over the course of writing my book, I have come to the conclusion that the alpine does more then provide me an opportunity to hunt.  The alpine has given me an outlet to help heal the wounds of guilt, shame, and trauma associated with Brayden’s stroke.

As a parent, when something traumatic happens to your child, you can’t help but hyper-analyze the clues leading up to, and surrounding the event.  I know I did.  I asked myself a lot of questions about what I could have done better or how I could have stopped it from happening.  I had to watch as my son spent over a week at the hospital wondering if we would ever play catch, or if the stroke would destroy his budding personality and intelligence.  My wife and I clung to each other in that time of fear and uncertainty, resolving to help our baby boy weather the storm.

I don’t delve into this topic at all in my book, but the relevance of Brayden’s stroke to my passion for the outdoors and the backcountry is intertwined deeply.  It was because of my book that I realized how much I’ve changed since then, and what I attribute those changes to.

I’ve written about some of my formative years hunting prior to stepping foot into a wilderness, and I’ve hinted that I was borderline obese before I decided I’d had enough.  What I have omitted in some form, is that I was obese because I was depressed, and that depression stemmed from guilt and fear.  The guilt over wishing I could have protected my son, and fear that it would return to strike again, finishing what it had started.  The guilt that I had been the carrier of the gene which had nearly taken from him his spark.

I did not start backpack hunting under the guise of trying to fill a void or heal a wound.  Yet, it did it all the same.  As I wrote Team Bad Decision, self-reflection on our journey was a necessary byproduct of such an endeavor.  I looked back in frustration, pride, sadness and glee.  I could read, see, remember and feel the men we were changing into.  When I looked deeper, I saw myself morphing into someone not only competent in the woods, but one who had forgiven himself and let go of fear.

There are plenty of studies that link hiking to improved mental health and I’m not attempting to prove or disprove those claims, but rather, to hint that I suspect the mountain has a lot to do with the current state of my mental well-being.

Both my boys are getting older now, and will soon trod the wilderness trails with Scott and I in pursuit of their first big game animal.  They come on scouting trips and hunker down in the duck and goose blinds, but are not yet ready for the big hunt.  But their time is coming.

I didn’t need my son to have a stroke to want to show him how to hunt, or for him and his brother to experience an alpine lake in August.  That’s part of the package that comes with fatherhood.  But I can’t help but feel that the mental scars associated with his stroke has intensified that desire.  I need them to see what healed a wound I didn’t even know was bleeding.

Those are often the most difficult burdens we carry, the ones we didn’t realize were there to begin with.

 

 

 

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