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

When Max was first diagnosed with cerebral palsy I was devastated as a father.  I had not prepared for this, no matter what the statistics say about how many potential kids will be inflicted with any disease or diagnosis those stats were for others not me.  I saw all that I had believed the life with my son would be crumbling before my eyes.  I felt like I already knew the answers to the questions I was afraid to ask, ‘will he ever walk?’ ‘will he be normal?’  All the dreams I had of Max and I throwing a football in the back yard, riding bicycles and wrestling together were in an instant nothing more than wishful thinking.

Where was the book on this?  All the great parenting advice, the pregnancy, newborn, and toddler raising books failed to address shattered dreams.  I remember looking out of the window on the 3rd floor, looking out over a world full of people living their lives.  Fathers playing with their kids, dreams being chased and fulfilled.  Who was I to wallow in my own self-loathing?

I remember meditating on that idea of shattered dreams, only I didn’t realize at the time how deep those ideas were embedded.  As I saw other children finding their voice, running free and careless.   Every time I watched a child Maxs age or younger doing something Max would never do, I was drawn back into the broken pieces.  My anticipated relationship had been built on assumptions, but was being reformed on a new reality.

I look back at who I was sitting on that couch, thinking about the tears and sorrow.  I realize that my life took a new trajectory that day and I would not change a thing.  The shattered dreams have been replaced by something far more valuable and much, much better.

scott

Max optimism Choosing to find the positive in the reality, choosing to embrace the smile rather than to be haunted by the tears.  Max optimism is not about ignoring reality or diagnosis, but rather choosing to understand that even in the darkest of circumstance even the smallest sliver of light can have immense power.

The Max Journey-

The information provided stopped my world.  How do you make sense of one or two sentences that literally change everything?  I could apply those sentences to many moments over the last 3 1/2 years, but this was different.  I struggled to make sense of what 12 months looked like, what 12 months really meant.  This isn’t where the journey started, the journey I have been privileged to be a part of started in February of 2008.  Yet this felt different being told your son realistically has 12 months left is much different then dealing with an uncertain future.

My journey is one of hope, of a son that has touched so many people with his smile and his laugh.  A son that has given adults hope and strength through their own trials in life.  A son that has made me a better man and a better father then I ever thought possible.  I look forward to the coming days and months with an open heart to allow all that my son is to wash over me.  I have been fortunate enough to be invited into his life and be part of his journey.

Living in max optimism

Scott