Shaped by the pain

Everyday brings a new memory, a thought, a photograph, a blog post. Everyday is a memory two years removed. Everyday I am still shaped by the pain, shaped by the moments that still stop my breath. It’s a gauntlet, a brutal reminder of the uncertainty and moments that pushed me to the edge. I melt as I look at the pictures and memories.

The pain continues to shape me, it constantly flows through my being creating new crevasses and caverns where none existed before. I have said it before I am a broken mosaic, a man trying to piece himself back together. I identify with the pain knowing its my reality, while at the same time casting a gaze to a better place as I remember the good and precious times.

I slowly creep towards December 25th, knowing what that day will forever mean witching my soul. I am being shaped by the pain, but I fight for what is good. I fight for the memories that bring tears to my eyes and a smile like no other.

Everyday is a two year anniversary of something, and everyday I battle to avoid falling into the darkened of grief. That’s the thing about grief, at least the way I see it. You choose to grieve in the shinning memory of hope or the pain and darkness. I will never undo the scars left while being shaped by the pain, but I choose to live in the hope. In the memory of a child full of life and joy. I choose that. I know the darkness’s and the pain will continue to come, and I know they will continue to shape me.

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“What do we do with Max’s stocking.” It was a simple question that I could hardly get out. The words fell out more than they were spoken. Tears almost pushed the words forward in an effort to escape.  
I didn’t really want to decorate this year, but Gracie said she really wanted to have the house decorated…. so the house got decorated. It was was the inside that I was haunting me the most. I knew the tree had to go up, stockings would need to be hung, and that’s where the proverbial rubber would meet the road. Where decisions would have to be made, do we put this one or that one up or would that one or this one cause too much heartache.  
(But seriously what the hell do I do with this stocking) 
I knew this was coming, I’ve know it for months that I would have to face it. The season that has brought so much joy, has turned on me facing me as if mocking me. Calling me, as if daring me to wade into its murky waters. Can I hold it together for 4-5 weeks… can I put on a mask of joy if only for a little while? That question is much harder to wrestle with than one might think.  
(I still don’t know what I’m doing with this stocking, my deceased sons stocking… what do I do with this stocking?) 
The lights are lit outside, and inside the tree is up and decorations are starting to fill the house. Tears fall as I continue to get choked up as this process carries on.  
Yet I sit alone in a room full of people and wrestle with the question, what to do with Max’s stocking 

How humbled I am, a broken man, a grieving father. Tears rolling down my cheeks one after another, my eyes didn’t stop burning for days. Hours would go by one after another, the emptiness and loneliness overwhelming.  
In the darkest of these times I was encouraged, encouraged by a family, a tribe of people pouring out there support. It was an awesome thing to behold, to be right in the midst of, to be surrounded by so many people coming together for us.  

Social media became a vehicle of that support, by the dozens words of encouragement flooded in. Names and faces that I saw a day ago, right next to one’s I haven’t seen for years. So it went the support continued to pour in. So impactful was every text, every Facebook comment, every message, every individual touch no matter the format meant so much.  

I can never repay all the grace and support afforded to me over the last several weeks. I can only say thank you, I can only try to express how much it all meant. Many of you will never know that yours were the messages that caused me to keep moving forward. All of our words have power, and it’s when that power finds it’s way into your heart in the manner that these words found their way into mine you can only stand in awe at the power of  friends, the power of family, the power of a tribe.  

I have hesitated to write this, my first post since Max passed away for multiple reasons. First I worried about over-saturating everyone with another Max post. Second I fear for all my eloquent articulation I will in fact fail to unwrap the required level of emotion. Third for the last several weeks I’ve simply been incapable of writing much of anything, let alone tapping into the rawness required. Yet in the midst of these continued concerns so many people have communicated with me expressing very similar statements, keep writing, keep blogging, people need to hear your story. I shall do my best to carry on, to muster up the courage to continue to share my story.  
Identity

For 9 1/2 years I was Max’s dad, and I played the hand that was dealt to the best of my ability. Every decision that was made over that time span had Max right there in the center. Like a warrior I fought through every surgery, every late night and early morning scare, every extended hospital stay and on and on and on. From the outside looking in people would tell me how in awe they were for how I handled situation after situation, but it’s all I knew. I was a champion for that little boy, I would stand when he couldn’t, my strength would be his and vice-versa. This is all I’ve known for 9 1/2 years.

Look at the dragon slayer lost as all the dragons are gone. The giant killer, who is he when they have all left. Maddox has been so intertwined into my identity, to the point of it being impossible to separate. Yet in those moments on Christmas morning everything changed. Shifting life from present tense to past tense. I will always be Max’s dad but wrestling with the fact that it’s no longer in the ‘active’ sense I struggle to make sense of the hole left in who I am. My identity is in shattered pieces, like a pane of glass scattered across the ground below.  

Its a dark, desolate and barren land that a man finds himself.  
I walked into the quiet room, Max was asleep to my right gently raising the blanket covering his chest. As I searched for a lost item my anxiety began to rise. It was moments later that the ominous presence of the on-duty doctor was felt. I sat down realizing something heavy was about to be dropped. In one motion he swung a folding chair around and was seated across from us. I was not ready, not now, not ever, I was not ready for the words that came out of his mouth. In the blink of an eye I was transported into the barren desolate existence of the impossible choice. Confronted with a question usually reserved for those with elderly parents, or those poor souls picking up the pieces after a tragic accident. The question of what path do you want to take? Do we travel down the road of more machines, more drugs, more care treading on the delicate balance of selfish care. Or do we call it good? Do we say the life that this boy has lived has been good enough. Do we “pull the plug” and let the disease take its course.  
It’s this choice that we wrestled with, tears formed, tears fell down onto the white tile floor. My insides tore apart as I wrestled with what to say. As a father I never thought I would be here. I always knew I may have to face this some day. However I suppose I let myself drift into a state of belief where I wouldn’t have to face this choice.  

As I held my sons hand, my chin quivering and my eyes welling up with tears I am acutely aware of how insignificant I am in this world. I was given this gift so many years ago, and brought on this journey.  

The doctor looked at us and made the statement what’s best for Max may not be what’s best for you. Those words resonated over and over. Was my selfishness driving the ship, or was I doing what was best for Max.  

Tattooed on my arm I have the word Decerto and the the Roman numeral V. In Latin this means ‘fight to the finish’ and the Roman numeral for the number 5 represents the 5% chance he was given to live at 3 weeks old. I am a fighter, and my son is a fighter.  

Until he breathes his dying breath I will fight for him, I will fight with him.  

The Journey isn’t over-Today is Thursday I’ve hardly slept in 4 nights, I’m strung out on intense emotion and waiting for the inevitable crash. This blog is called ‘The Max Journey,’ it was birthed out of the need for me to pour out my heart during some of my darkest days. It’s followed through highs and lows journeying with my son who has severe special needs.  

  You’re never ready for the journey to end, never prepared for that moment when you’re confronted with a freight train of reality. We’ve been told on multiple occasions that the journey was ending. The first almost before it started we were told he would not be alive through the night, then at about 2 1/2 we were told he had 6 months to live and that we were lucky we had the time we had had with him.  

  This last Sunday however was different, after the chaos at home, the ambulance, Max was crashing hard in the emergency room. I arrived at the front desk a bit after Max, and was promptly handed a visitors sticker with a large C on it. Now I’ve been in and out of this er to know numbers are good and letters are bad, as they use letters for their trauma rooms. I was ushered to his room and as the curtain opened I was quickly confronted with the seriousness of the situation. 2 doctors and 4 nurses surrounded Max’s lifeless body. He was non-responsive and his color had a grayish tint that led to a sickening feeling overtaking me. The look on the doctors face was the last straw, although he continued to speak the words “we’ve got a really sick kid on our hands,” what I saw was a man out of options and out of ideas. I stood in the midst of orchestrated chaos and it felt as if all the noise was turned off and staring at my son I said to myself “it’s over, the journey is done.” It’s not that I haven’t seen him crush the odds in the past, or that I didn’t have hope or faith. It’s just this time felt different. The thoughts started coming furiously in my mind. Starting with the self encouragement of you always knew this was a possibility, it’s was an amazing journey. To then being consumed with pain thinking about what this would do to his sister who was set to celebrate her 12th birthday in just 6 days and everything in between. I felt as if I was on my own private roller coaster lifting me up whipping me around and dropping my from insane heights. While everything swirled around me I wrestled with the end.  

  Yet this wasn’t the end. Max was admitted to the pediatric intensive care unit and he fought and fought with every fiber of his little frame. He still in his deluxe accommodations, and he’s still fighting with every breath.

    He is not done, the journey is not over 

Yesterday
Yesterday Max turned 9 years old, just a couple weeks under 9 years removed from sitting on deaths door fighting for every breath. From the doctors looking at us and telling us he had a 5% chance to live (and that was being generous). 8 1/2 years from his first brain surgery when they began to unfold the journey that we were about to embark on. A bit over 6 years since they looked at us and told us Max had 6 months to live. All these yesterdays are woven together to create a beautiful tapestry. The tapestry of a life unknown, a life redefined. Countless yesterdays are connected unfolding a beautiful narrative. One of tragedy and triumph, of despair and hope. These yesterdays collide to paint the days like fireworks across the moonlit sky. 

The thing about yesterdays is that what they are and what they are can change as they filter through time. The moments of darkness become the foundation for the sweetest joy. The moments of complete despair can give way to limitless hope. With Max these yesterdays will always remain impactful and powerful, but the emotions they evoke have changed over time.  

My son was set on a trajectory 9 years ago. That trajectory was not what I had hoped or dreamed, that trajectory was a far cry from the range of normalcy that we expect when our kids are born. Max has been on the ropes more than once, like a boxer desperately trying to keep himself in the fight. Traveling miles of fluorescent lit hallways, spending countless hours within hospital room after hospital room I have come to truly know what ‘fighting’ looks like. Words like perseverance and tenacity have new meaning. Max has spent 9 years defying the odds, I’ve just been along for the ride.