“The journey of a thousand miles begins with one step,” Lao Tzu

This quote is one of those quotes that many people use over and over applying to any number of different circumstances.  In different forms inadvertently replacing some words but attempting to hold on to the spirit of the quote.  It’s a quote many use when they are embarking on a new life challenge, that first step outside of the confines of the hospital carrying a newborn baby.  Sometimes when deciding to make the first step into rehab, or into a gym.  The idea of isolating a giant task into on isolated motion can remove much of the fear of failure. 

I find myself meditating on this quote not in reference to starting something new, but in relation to picking myself up off the ground when I’m lost somewhere in the journey.  Recently I was 20 miles deep on a 40 mile bike ride and it wasn’t the last mile or two that were the most difficult, it was picking myself up off the grass in the hot sun and clipping my shoes back into the pedals and making that first push to start again.  Life’s interesting like that sometimes we carry on with an unseen momentum that just seems to push the pace.  Then other times we are pushing against an invisible wall, we’ve come too far to turn back, yet we have no line of sight to see the finish.  We know not the terrain ahead nor exactly how many steps are needed to complete. 

The journey with Max is an unknown, yesterday morning I woke up after a few hours of broken sleep only to be jolted back to reality when Max was running a temp with blood coming out of his ear.  The journey absent of momentum required more steps, heavy weighted steps. 

I am a man who has learned to never underestimate the emergency room, after having many a plan thwarted I have a great deal of respect for every step I take in those halls.  I’ve sat in the mass produced commercial chairs exhausted wondering if I had the strength for another step, wondering if I have the internal fortitude to take the next step.  I think back to an old Indiana Jones movie when the path to his destination seemed impossible, but with some quick thinking our hero throws some dirt and pebbles out onto an invisible bridge!  Crazy how it always worked out for Jones, without fail he always knew when to bob and when to weave, when to spin to duck.  It’s almost like it was scripted.  Wait, let’s get back to the bridge, taking the first step onto an invisible bridge would be pretty breathtaking I suppose.  Not like the thick engineered see through floors that we walk across with faith in modern technology.  This was in the middle of a cave with some relic of a map, this was legit invisible bridge.  Sometimes in our own way these are the steps we are forced to take. 

A while back I found myself mountain biking on a trail that had not been touched by anyone in what seemed like years.  First it was not a mountain bike trail at all, it was a series of snowmobile trails hiking trails and an old washed out service road.  At one point the river I was riding parallel to had crested over the side and washed out large sections of the trail.  This was not the type of trail I had become accustomed to, I have come to expect my mountain bike trails groomed, hard packed and cleared of debris.  I realized while descending down a steep downhill with my breaks locked and my feet desperately seeking stability on the side of a soft hill peering over a 30 to 40 foot drop into the Pine River that in fact I really liked my mountain biking packaged and safe, domesticated if you will.  Just like I like my life, predictable and domesticated, I don’t mind risks as long as I can determine the level of risk and oh as long as nothing will happen.  I no longer live in cruise control much like the trip to the hospital on the morning of the 4^th of July life with Max is neither safe nor domesticated.  The moment I seem to lose focus on my surroundings, the journey, or forget that it’s as hard and as simple as taking one step the journey ensures I am brought back into line.

Lost communication
What is life without communication, joy, anger simple emotion. What are any of these without the ability to communicate? We know what these emotions look like in our mind, or at least we count on the ability to express them verbally. I tell Gracie I love her multiple times every day, I tell her so much she says “I know dad you already told me that today” but I continue telling her anyway. I know when she is mad at me, she tells me. When communication in our relationships break down we can stop and regroup. We sort it out, we apologize or agree to disagree.

What then when all we know about communication is gone. When we say “I love you,” but can only hope the recipient hears and understands. I’ve known people who have had parents or grandparents with alzheimer’s or dementia and have heard of those accounts where the loss of communication becomes overwhelming. The inability to know if they understand and reciprocate.

This is one of the struggles that eats at me, that gnaws at my soul. Does Maddox know the depth of my love for him? I tell him dozens of times a day, I hold my cheek to his to allow him to feel my skin, but does he know? He hears me, I know that because the hearing tests say his hearing is great but what is hearing without comprehension? What our words without the ability to link them to meaning?

I find that when I’m honest with myself I’m guilty of trying to build up love with things, trinkets, experiences things that will create a greater mass and density to my love all the stuff the consumer driven society we are living in tells me I should. The problem is when none of that applies or at least has minuet impact.

I find myself with little peace at times and little confidence that I have done enough to communicate my love to my son. At the same time I know all I can do is to continue saying it, to continue to do all I know to let the spirit of love embrace him. It has to be more then words, for without communication words have fleeting value.

Tonight’s post is a bit of a throwback to when The Max Journey really started

The hallways were all black, the only light was the blue glow emanating from room after room in the NICU.  The normal beeps, bings, and dings that filled the air were eerily silent.  I had been accustomed to visiting Max in the morning, I had been visiting him each morning for the past 3 weeks as Max was growing and getting stronger.  This morning was different, we had been woken up by an early morning call that Max was sick.  Sick however was a word that couldn’t describe what I was about to walk into.

The halls seemed to be miles long that morning, the halls I had walked so many times before seemed so foreign.  I came to the last corner and saw one room illuminated by the flourescent lights hospitals are so known for.  One room at the end of the hall with what was no less than a dozen doctors spilling out of the small cut-out of a room.  Time seemed to stop, I suddenly felt the shock of every step travel up from my foot through my entire body.  How long it actually took me to make it to the room I am unsure of, I don’t remember any of the rooms I passed.  I simply walked towards the light.

I got to the room and began to see expressions, not faces, not people but expressions.  Empathy, sympathy, pain, fear the emotion was clearly evident.  The people began to part and usher me up to the small unit containing my son.  In his time in the NICU Max had never been in an isolate or had intubation, but now it seemed every machine in the room was hooked up to Maddox.  It was difficult to know where the machines ended and Max began.  When I really saw Max his skin was a gray translucent color, this was clearly what death looked like.

I remember distinctly looking around for somebody to tell me everything was going to be ok, that this was just a bump in the road.  I remember not being able to make eye contact with anyone.  I sat looking at my son in total isolation, yet in a room full of people.  The visegrips of despair were fully locked in, the intensity of the moment had drained me of any logical thought.  I crumbled into a chair next to Max, my face buried in my hands as I slumped over in the folding metal chair.

That day loneliness was redefined, people will come and go in my life.  Relationships will be built and torn down, but nothing can compare to the loneliness I experienced that day, and that was where The Max Journey really began.

sb

The word inclusion is defined as the act of being included

I know in my life I can look back on times when I was outside of the ‘act of being included.’  For instance at 5’5 1/2″ I was not included in very many basketball teams.  Sometimes I was included in a broader sense but not included the way I longed to be included I was on the football team, but being short and relatively slow I was not blessed with the physical requirements required to excel at a sport built on size and speed.  Yet I as a person have never battled inclusion in basic life.  I can traverse most landscapes, I am able to climb or get over any of the obstacles I may run into in my life.

Yet these days I find myself waist deep in this concept of inclusion.  Maddox has a wheel chair that is valued at 2 times the values of my truck, this wheel chair is a hefty 62 pounds and is crash tested.  I know your probably thinking “That’s awesome… I want a personal tank too!!!”  On the flip side Maxs’ wheelchair is not very agile, its wide and bulky.  It does not climb steps well at all, not does it do well on steep downhills.  Some inclusion issues are relative, so I have to find other ways to take Max deep into the woods or out hiking in difficult terrain.  Inclusion also becomes an issue in retail stores, restaurants, and entertainment venues.  Is it enough to get in the building but not be able to experience its contents.  Isle ways are narrow, I have more than once pulled entire sections of retail clothing off the shelves after assuming we could fit, as well I have inadvertently taken chunks out of the interior walls of many stores.  I have felt the awkward looks while waiting for a table at a restaurant in a waiting area that is congested without a wheelchair.  I find myself working to push the inclusion line, I can’t go to the store and buy a bike trailer that Max can sit in nor can I get a child carrier hiking pack that is designed to give him the support he needs.  Inclusion is on my shoulders, it’s up to me to be creative about how to get Max out in the middle of the woods or several miles in to a good bike ride.  We all face issues of inclusion, but usually is decision or preference based and in isolated instances.  Fighting for inclusion as a way of life is a new thing, but the only other option is forcing Max to sit at home… and what kind of life is that.

Daily I drive by a house not far from my own.  This house is very nondescript, nothing very noticeable, the type of house that most would forget once they are past.  I know little about the owners or residents, but I look every time I drive-by.  Sometimes 5 or 6 times a day I will pass this house and rarely do I not turn my head towards the cement driveway and 2 car garage.  You see at this house sits a man in a chair, I don’t know his story or why he sits in the chair.  The chair is often a standard issue office chair, sometimes with arms but most often without.  Usually gray and black, and Always on wheels and equipped with the ability to spin.  The man has been struck with something that has made his reality much different then you or I.  I wonder often if this was something he was born with, or some tragic accident created this new world.  He sits and spins looking up at a 45 degree angle toward the sky.  Sometimes he spins the seat, other times he spins the chairs with the wheels.  I suppose most people find it easy to drive by without ever thinking of the driveway, the garage, the chair or the man.  Yet I find it impossible to not look, I am not sure if I am trying to gain some sort of larger context to my own life or maybe into his.  What I am certain of is that the man in the chair scares me, I fear my own son being that man someday, I fear that driveway being my driveway and that garage being my garage.  That man scares me because I fear someday that man will be my son.

sb

Hope is tricky to hold when despair is present.

As the hospital stay continues to get further in the rearview mirror we continue to frequent doctors office’s and test appointments.  The reports and tests stack up creating a mountain of evidence.  A mountain of dreary grayness with the occasional slicing light breaking through.  I am challenged daily in my faith, in my hope.  It’s a different feeling when you have to honestly consider what you’re hoping for?  So often we base our hope on a realistic foundation of facts and knowledge.  I am guilty of it, I am an optamistic hopeful person when the doctors reports and belief line up with my hope.  When the percentages tell me that my hope is justified I am a giant of faith, but hope is tougher to hold when nothing indicates that hope is justified.

According to many the opposite of hope is despair, and despair rolls in like a fog over the morning dew with no fanfare or announcement just silence.  The line between hope and despair can at times appear to melt away.  I find despair seems to linger, despair seems to have an uncanny ability to align itself with any report that comes across.  The darkness of despair drowns out the light of hope.

The Max journey is one built on hope.  Not hope found in statistics, but hope that is free of reason or justification.  That hope is hard to handle, it’s not easily duplicated nor is it easy to gain.  It’s a hope forged in that darkness of despair.  The hope that leaves scars.   

What is defines the spirit of a boy?

The way little boys will push themselves to climb up and jump off of anything?  The way little boys will turn anything including sticks, straws, pencils, and the likes into guns?  Is it the way that they seem to actually be magnets for dirt and mud?  The wild running and crazy look of wonder and excitement that permeates their beings?  Is it the mischievous grin right before doing something to their sisters?  Is it the way they melt in their moms eyes when they get a bump or a owie?

We could say that all of these things wrapped up provide a good outline for the spirit of a little boy.

What happens when the outline doesn’t fit?  I find that as the father of a special needs son things are at the same time completely different and yet the very same.  Max cannot climb, or run, or jump.  He doesn’t have the ability to turn things into guns, or weapons.  However Maxs world is not defined by what he can’t do, but by the myriad of things he can do.  When you look into Maddox’s eyes you see the heart and spirit of a wild and passionate little boy.  The spirit of a warrior and a hunter.  Life has limited the package in which this spirit can be delivered, but life has not been able to contain it.

I watch him as he punches toys, and puts choke holds on random stuffed animals.  As he lifts toys and medical equipment alike only to drop them back on his head.  watching that mischievous grin creep across his face right before yanking on his sisters hair.  Seeing his eyes light up and his sinister laugh as his sister gets in trouble.  I find myself looking in his eyes and seeing the world-changing spirit that all little boys get.  The same look that little boys get when they talk about being fireman or astronauts.

I watch from across the room as Maddox pushes the boundaries of what his condition dictates.  Max has listened to the collective medical community saying ‘no he can’t do that,’ and has chosen to ignore.  The spirit of a boy cannot be repressed with rules, and it cannot be repressed with a diagnosis.  The spirit of a boy will find a way to push the boundaries and limits, the wild spirit that has changed nations cannot be contained.

scott

The house is once again filled to the brim with all the joy that Maddox Isaiah brings.

The silence that was deafening has been replaced with an irreplaceable palpable energy.  Over the last several weeks, it was the harrowing silence I feared.  Walking through the archway to the feeling of gray, no light, no dark just overcast and gray.

The laugh that seemingly erupts from deep within and bounces off every wall gaining steam and momentum.  His smile that can light up even the darkest of days, this is the Maddox that touches the hearts and souls of anyone he meets.  I suspect anyone that has spent time with Max is smiling right now thinking about his laugh and smile.

Max seems to have this infectious personality that literally inspires people to live with more hope, to embrace the great things in life.  In the past weeks I have found myself more aware of surroundings than ever before.  More aware of the people in my life seeking to embrace the relationships and friendships.  More aware of the smallest moments with Gracie and Max, the jokes, the smiles, and the laughs.

Life with Max is never lived in shades of gray, but in explosive life changing vibrant colors.

scott

The results of the Echo cardiogram look perfect…

The latest twist in the journey was one of awe, no one could explain why given the severity of Maxs apnea and the length of time he was dealing with it, coupled with 3 years of high blood pressure Maxs heart should have shown if not major damage at least some level of impact.  The looks of disbelief spread across face after face as people heard the news.  I am convinced that within the confines of Maxs 25 pound frame exist the spirit and heart of a giant killer.  I am humbled once again that I am able to rejoice in a situation where modern medicine struggles to find answers.

Within the joy and elation of an answer to the myriad of prayers that had been prayed for Maddox I find myself thrust back into the darkness of the unknown.  I realize that this admission of my personal struggle may ruffle some feathers and that the rawness of my struggle might be found as slightly odd, but there seems to be a flip side to every coin.

As the father of a child with a terminal illness and ambiguous diagnosis I find it is not the diagnosis that I fear but the absence of answers that bring about the most unrest.  After almost 2 weeks of walking through a variable hell making peace with the expiration date that had been placed on my son’s life I had arrived at an amazing place of peace.  Peace wrapped in humility and joy in all that Maddox is, but the jolt of the positive news has been equally difficult to make sense of.

In great awe

Scott

The thing about pictures is that they never change, it’s what we see in them that changes.  As memories change over time as relationships shift and circumstances reinvent themselves.  I find as time moves on I am more drawn to the eyes, initially its the situation and the surroundings then the smiles.  However I am always drawn to the eyes, to seek the emotion in the picture.

I found myself looking at pictures of Maddox recently and was brought to the edge of my emotions.  The passion of a life yet lives, the determination of a boy who refused to fail.  The stubbornness of his father and grandfather, and the compassion of his mother.  I look and see a 6 month old less than 24 hours out of brain surgery eyes lighting up a room and touching the lives of countless friends, family, nurses and doctors.  Pictures with his sister that allow brief glimpses into the love of a brother unable to articulate with words.  Picture after picture of Max and I, a father and a son.  I see in those pictures everything right in the world.

scott