What does it mean to be an optimist? What it isn’t is someone who ignores any negative or unfavorable circumstance. It isn’t the person with their head in the sand pretending everything is fine. The optimist isn’t blind to the fact that things can go sideways. No one has an open-ended promise that life will be free from pain or sorrow, free from fear or failure.

The dictionary defines optimism as being disposed or inclined to take a favorable view of events or conditions and to expect the most favorable outcome.

Optimism doesn’t start as something you are, it starts as something you choose. You choose to train yourself to look for the favorable within the negative. Circumstances are nothing more than the backdrop for the screenplay of who we are. The old adage is appropriate ‘adversity reveals the man.’ The shaping of adversity only comes after the dust has settled when we can look back objectively and grow. In the midst of adversity who and what we are is simply revealed. The optimist is revealed as one that can stand in the storm and see the sun behind the clouds.

My normal is not your normal-
My joy is not your joy and my pain is not your pain

“How’s Max?” 2 words, 1 question, I’ve heard this questions thousands of times. I understand the desire to ask, to know, to connect with his journey, his pain and his joy. I am nothing more than a messenger, exchanging information. How do I answer the question that has a thousand answers? I am not sure what the question asker is looking for, do they want to hear something positive that will encourage their own spirit? Are they asking related to just the most recent diagnosis, or are they asking from a big picture view? Is the question really, ‘is he going to live?’

I struggle to continue to close off with short, polite answers of ‘he’s good,’ or ‘doing well.’ I find recently I have transitioned into a darker answer of ‘he’s good, for Max.’ I found myself questioning my motive for adding the ‘for Max’ at the end. Am I seeking some level of unspoken sympathy? Am I forcing others into ambiguity, not allowing them to feel good about positive progress? I rarely offer any insight into what that means, I simply walk away leaving the statement hanging.

The truth can be so complicated. He’s doing better than a week ago, but still not where he was 6 months ago. Better than his worst, but worse than his best. Some weeks, days, and hours are better than others. This is my normal, sometimes its 2 steps forward and one step back but then other times its 1 step forward and 2 steps back. The cycle continues, over and over.

This is my normal, the spectrum of joy and pain of progress and regression. For most this constant state of limbo would be maddening, having no baseline to go back to. Sick gets better, broken heals, and pain subsides. This is the way it’s supposed to be; with the right medical treatment normal is only a prescription or surgery away.

Normal and good for Max is a wide spectrum, which in turn makes my normal and good a wide spectrum.

How’s Max?…. He’s good

“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