Archives for category: parenthood

The moments when I’m acutely aware of my own failures, are the worse. When I feel like I’ve become a fraud, fearing that I’m moments away from being exposed.

I question who I’ve become as a father, I question my capacity to adapt. The road has changed, the pedestrian sterile path is gone, replaced by a grinding rarely traveled path. No wider then needed, the fullness of the forest closes in on those not strong enough to carry on.

It’s not my ability to physically proceed but my soulish desire to go back. I fear I’m not strong enough mentally and emotionally to continue the journey. Some days the light cuts through shining the most amazing light, others the clouds seem to create a haze so thick its virtually impassable. All I can do is sit and wait, providing just enough time for my mind to twist and turn. Everything comes into question.

I know I’ve got no choice but to carry on. One proverbial step in front of the other. Ignoring the selfishness within, trying desperately to hold on to the joy of the journey.

As I was sitting this morning in a random hotel breakfast area, windows full of a dull grey sky. I find myself looking across the table at my daughter. She doesn’t pay attention to me as she’s wrapped up in the task at hand which happens to be finding a way to eat the plate of syrup she has that happens to have a pancake somewhere hidden within. She doesn’t realize it but her spirit has lifted me up this morning, her joy for life has brightened even the dreariest day. I find I’m overwhelmed by thinking about who she’s becoming. The life she’s lived, the pain and struggle she never asked for. I look at my little girl and find myself in awe of the way she’s handled what life’s presented to her. I cherish the moments when I get to watch her be a seven year old girl.

Sb

The pageantry of the moment isn’t lost on me. After being given a 5% chance to live the boy they said wouldn’t make it (multiple times over the years if i might add) is turning 5 years old. I would be amiss if I failed to capture the symbolic nature of this event. With only a few days left before Max turns 5 its only natural to find myself Meditating on how monumental it all really is. I remember the faces as if they were still standing in front of me. I’ve told the story of that morning countless times, yet it still sends shivers down my spine. Out of a cold lifeless body clinging to existence itself 5 years of pain, of tears, of joy and of laughter have culminated in a definitive moment of life.

I realize that much of this I’ve written about in the past, but with the passing of time we’ve been blessed to have so many people enter into our lives whom are just starting their journey with us. I’ve tried so often to truly thank those that have been impactful along the journey, is worry that I’ve not done them justice. Without the support of so many I shutter to think where we would be.

So many of the moments have and continue to shape me. The vision of my son slipping away, on the verge of death. Sitting as a father hearing that his son, the one that he had so many plans may never talk, or walk or even have a personality at all. Having to sit on a bed while your 5 year old daughter asks if her brother is going to die and having nothing but the truth about what the doctors said to tell her. A man does not walk away from moments like that the same.

Ive never seen my story as tragic but a story of faith and hope. A story about a gritty underdog that against all odds went through hell and came out of the other side and has been smiling every step of the way. The hero in this story is a little boy that melts everyone that meets him and whom has a thing for the ladies. Max over the last 5 years has inspired so many, his story has been told by so many and continues to be told. He was a beacon of hope through sickness, his picture is held close by many. The words ‘if that little boy can survive so much then I can make it through this’ have been uttered so many times.

I don’t know what the coming years will bring, and I’m sure I’m not ready for it. Ive been so afraid so many times I never felt I had the strength anyway. As I’ve been sitting here the memories serve as reminders of the intensity and depth of the journey so far. It’s an unfolding narrative that I still count myself to be blessed to simply be a part of. Maddox and Victoria Grace continue to be best of me, and that means everything.

Scott

So much power in a single phrase, bringing up memories that had been pushed well into the caverns. Within seconds the same emotions that had so intensely gripped me years ago were holding me again. The memories, the fear, the pain was never tucked anywhere. As if they had been stalking me all this time from the shadows. The thought of my son being back on the operating table. It’s a weird thing to think about, the idea of the non-invasive brain surgery. To the outside world I’m sure the look on my face was that of a man who had seen a ghost. In many ways I did, finding myself staring down the pain of years past. All I can do now is wait, nothing is determined maybe this is all for naught.

The lust for control and predictability in life force the death of the beauty that is life’s mystery. Ones goal should never be to manage life to remove risk and only color between the lines. Managing life is like presenting flowers in black and white to the love of your life. To be managed is to be marginalized and to marginalized is to be devalued and to be devalued is the heartbreak we all share.

The mysteries happen around us, at a rate that we cannot fathom. The mind cannot make sense of the serendipitous moments that overtake us. The myth that something that beautiful and pristine can be managed is foolish at best.

Only the fool believes that life can be controlled, that they determine the manuscript that life will read from.

I am brokenness, I am the dust of a dream long gone. Nothing more then a mosaic of scars and wounds. Pain seeping through and dripping to the waiting earth below.

Like a ghost I feel life go through me, never able to grasp what is real. Seeking to know the joy of smiles surrounding me I am only left with the hallowed darkness within.

The seams are failing as the seething despair pushes against the confines of the flimsy walls. Brittle imagery dances about moments from a splintering demise. The darkness within relishes in the broken pieces as they flutter to the ground. The porcelain dust mixes with my tears on the cold lifeless ground

As the days tick by and the calendar pages flip. Max will be 5 soon, we are now 4 years removed from that fateful September. The September in ways feels so distant but the scars still as fresh as that first day. I still look at the MRI regularly. I look at the same picture I was shown. Somedays my eyes fill with tears, and others I find myself reflecting on the uncharted path.

Lately I’ve found myself watching my son growing older. The things he likes have been changing, the way he wants to spend time with me has been changing. It’s not that I’m surprised of such changes, but when you are faced with conditions and ailments that mask some of the changes in front of you it’s easy to miss the subtle things. As he has continued to find his voice both audible and communicating through his own signs he continues to exceed everything they said he would do.

4 years have passed, years filled with the support of amazing people in our families lives. Amazing people in my personal life, I could never repay all of the people that have been there for me in one way or another. In fact it would be impossible to even know where to begin, but I will never forget. People still ask, they wonder about how Max is doing. I cherish those individuals who are still by my side.

Max continues to grow, and in many ways so do I. I grow in the ways I view the years, in how I view the journey. The scars on my heart and on my soul have not changed, but I embrace the scars and I look optimistically toward the change and journey ahead.

Sb

It seems like its been so long since I felt connected. That was the internal commentary I had. The feeling of connectedness is referring to the deep cutting emotional pain and joy that I’ve experienced over the years. The moments when I’ve been emotionally broken, when tears have rolled off my cheeks. No matter how much time had passed I felt connected to the moments that changed me. But where did it go? The other question I can’t help but ask is if this change a good thing? I don’t want to lose the raw purity of those emotions. I don’t want to become disconnected. I fear I have become calloused.

This is uncharted water. This lack of intensity surrounding Max. Was it the darkness of the valley that heightened my senses and made me ultra aware of even the most finite emotional changes. Fight or flight, when a man stands toe to toe for so long what does that man become in the absence of an adversary. What brings him alive, what demands the best of him? I don’t know if this is a good or bad place I just know its a different place.

Its a strange feeling to be in a moment surrounded by others that you know are looking at you and your son. The looks can have many different emotional drivers but the looks are there. To anyone that has ever been in this place to go isn’t always the clear choice. I put Max in his hiking pack and I go, I strap him into the bike trailer and I go, I buckle him into the running stroller and I go. Through 18 holes of miniature golf with Max on my back we putt for the win. In the arcade I take him out of his chair, sit him on my lap and we race cars. I hold onto him with one hand while I steer the tilting motercycle back and forth until we fail to make a new checkpoint. I have become skilled at manuvering through tight corners and doorways with Max in his wheelchair. I am graceful when I am zipping through groups of people. Max and I we do a lot of things together, not because they are easy or convienent but because he deserves to experience every ounce of excitement that life has to offer. I will not apologize for Max and I, I don’t fear the looks or comments we just go.

scott

I walked into the room and leaned down, placing my cheek against Maxs cheek. I Softly said to Max ‘when I hear you laugh like that I know you are my son.’

His gaze shifted towards me, his smile peaked just a bit higher. Max didn’t reply and I didn’t add any more words. That was all that needed to be said.

Scott