Archives for category: Uncategorized

He danced

April 30, 2012 //

“Max danced at school today” I let the words wash over my spirit and soul. What power in the statement, power to shift faith and belief.

It’s not always a walk through peaks and inspiration. For every second that I find myself overwhelmed by an awe inspiring moment it seems I spend a thousand searching.

I search for purpose and meaning in the journey, I search for ways to share Maxs story and ways to inspire others as the walk through their own valleys. I search for strength within to keep going, and sometimes I just search for peace.

I have come to expect great things from my son. When you’ve seen what we’ve seen and walked the road we’ve walked you cant help but expect the impossible. Some days deliver and others don’t. I question at times what my place in the story is becoming. Am I becoming detached from the story? Am I becoming more of mouthpiece for the story and less of an active participant?

This is the place I found myself in when I heard the words “Max danced at school today”. The mechanics of the dance are of little importance, it’s the spirit of the line that captures the heart and mind. Hearing these words reset context, they bring the journey back into focus.

Scott

Categories overcoming adversity, parenthood, special needs, Uncategorized

Crippled in victory

March 28, 2012 //

You see someone struggling to walk and crippled, I see someone who was told they would never walk.

The thought hit me as I was driving home from work recently. I was driving along my mind shifting from the stresses of the day and the upcoming stresses of the next day. I wasn’t particularly dialed in to my introspective self not was I looking for a life altering epiphany.

In the distance I saw a women crossing the road, as I got closer I could see she was moving very slow with every step labored and shaky.
I watched her as I passed and was overcome by the thought that at some point in life, maybe at birth, maybe after a terrible accident but at some point that she would never walk. Maybe her parents wrestled with the statement that their child would never walk, maybe her kids and spouse sat in a hospital room as the doctor delivered the news. Just maybe every step taken is another victory, a testament of what is possible and the strength and power of the human spirit.

I believe it’s human nature to see a struggle like that and look on with sympathy or sorrow at how bad life must be. Yet we have it all wrong, the pain is not the sorrow producing kind of pain. The pain the struggle they are of the mountain climbing type. The pain of hope, the pain of proving the doctors, the circumstance, the statistics, the whole world wrong.

If you were to tell a person that has faced the darkest of circumstances that you feel sorry for them, I can tell you the response you’ll get from that individual is that they feel sorry for you, because you may never now how much power you have and what you are capable of overcoming. I can say that with conviction because in many ways I am that person.

Scott

Categories overcoming adversity, parenthood, special needs, Uncategorized

The Other Child

March 25, 2012 //

As we picked up speed on the downhill I took a moment to look back at the trailer I had in tow. It only took a second for my heart to melt. In the trailer was Gracie sitting quiet and still, smiling as the sun washed over her. On her left shoulder laid her little brothers head. Max with a look of complete comfort and happiness. For any father the sight of you kids enjoying each others company is a blessing, but for me on this day it meant the world to this father.

Over the last couple weeks I have been working on an article titled ‘The other child’. ‘The other child’ is about parenting siblings with a special needs child. I don’t pretend to be an expert on the subject, but it seems that a lot of people think Brandy and I have done an alright job. Over the last 4 years we’ve heard lots of professionals comment on how balanced and adjusted our daughter was and how much love she has for her little brother.

Anytime I have the opportunity to tell my story I am quick to start with Brandy and I sitting in the hospital room after receiving Maxs diagnosis. We were very purposeful at that moment to begin the dialog about what this means for out daughter. It was the start of a dialog that is still taking place, and a dialog that I don’t believe will ever really stop. My hope is that the article once finished will offer encouragement and serve as a loose set of ideas to help other parents navigate the rough waters of parenting with a special needs child.

As I have been trying to capture the spirit of what we have sought to do, what I really needed was to look back and see my kids together full of joy and love for each other.

Categories overcoming adversity, parenthood, special needs, Uncategorized

Question and the pause

February 23, 2012 //

Earlier this week a friend with some reservation asked me a question about Max. The question was simple, but difficult to articulate. How do you ask someone tactfully what the outlook and or timetable of their sons life is. Given that less then a year ago we were told Maddox had 6 to 12 months to live I felt it was certainly a fair question. I thought about how to honestly answer the question. While its true that man of the drivers that generated the 6 to 12 month time frame have since been unexplainably removed, the depth and scope of the unknown is just as vast.

When I was younger I was fond of the quote attributed to James Dean “dream as if you’re going to live forever, live as if everyday is your last”. As that idea continues to grow and be reshaped in its application that was in so many words my answer to the question. Everyday we look toward the future with optimistic hope, fully embracing what the future holds. The lives that Max has impacted and will continue to impact. While also being aware that every night our nightly routine plays out after rocking him to sleep I carry Max and his feeding machine into his room laying him in bed. Everynight I pause and look at my sleeping son at peace with the world, and every night as I kiss his forehead for a split second I pause. The pause is not out of fear, but out of respect. Respect for his strength, for the last 4 years, and respect for the journey. A heart of thankfulness for his life and the strength that he has lived it with. Every night that pause keeps my heart soft and my spirit at peace with whatever the next step in the journey is.

Categories Uncategorized

All over again

February 22, 2012 //

Another random nondescript Tuesday came to a close, and with it a strange feeling to the evening unfolded. On the eve of another surgery, another trip onto the tiled proving grounds of life. For the first time I was able to reflect before the event. Before the operation, the hospital stay, before the waivers and meetings with anesthesiologists and surgical nurses, before the waiting rooms and stale air.

I can’t avoid the interesting timing and the subsequent reflection. Less then a week from Maxs birthday, 4 years ago Brandy was in the hospital and we were still waiting for Max to arrive. All we knew is that we had a baby boy that had a future waiting to be unfolded.
Its been quite a run, Who knew right? None of this could have been anticipated or foreseen. Really even if it could have been it wouldn’t have changed anything. I know for sure I wouldn’t have believed that I had the strength to handle it. That’s the thing about life shaping circumstances, we never start out with the strength or character that we do at the end.

As I sat in the same cream colored pre-op room with the same deceivingly uncomfortable brown chairs I’ve sat in a dozen or more times. I watched them roll the bed out with Max neatly in the middle headed for surgery. It’s a scene not uncommon in our lives but even after so much it still leaves an empty feeling inside.

Categories Uncategorized

To Max, From Dad

October 24, 2011 //

Max,
Sitting in my darkened truck with the lights from the radio and the cars passing buy I am overcome with great awareness by the weight and gravity of being your father.

I, nor modern medicine can take away the burdens that cripple your earthly vessel. I would give everything to remove it for even a day, an hour, even for a minute. I would give anything to be able to let you run. Free from every ailment and the torturous physical shackles. I will push with everything I have to give you that moment, to allow you the chance to feel the freedom of life.

A day will come in this life or the next when all that you are will be free to run. That the warrior spirit that has overcome the insurmountable odds, that fought through the darkness that modern medicine could not see through. That warrior spirit will be released on this earth or in heaven, and that day will be the most glorious day the man can imagine.

Until that day I will fight for you, I will fight.

Dad

Categories Uncategorized

Giant steps

October 5, 2011 //

Giant steps-
What is the impact of one step? According to the legend of Paul Bunyan a series of steps can form 10,000 lakes. The steps off the lunar module defined a Generation. We all take thousands of steps everyday, one after another without a second thought.

While Brandy and I saw the MRI as we prepared for Max’s time as we tried to make sense of what it all meant I had to ask the question. Will he ever walk? I was afraid to know the answer but I remember feeling like that would put things into a more understandable context.

‘We don’t know, it’s possible that in 5 or 6 years he may walk. He may never be able to walk. We can’t say with any certainty either way.”

My son may never walk, I struggled to verbalize the words. I could think it, but trying to say it would rip me apart, I couldn’t stop the tears.

So I ask again what’s the impact of a step? For you, for me for the majority of Americans it means very little. To a boy whose never known what it’s like to thrust his foot down into the summer grass or into a spring puddle one step can mean everything.

It’s an amazing thing to watch Max’s spirit overcome the body that betrayed him. Recently Max has found the motivation to begin pushing his limits. Pushing his body well past it’s previous limits. As I hold my hands under his arms I can feel his determination. I can sense his spirit getting stronger.

Sometimes we walk across the room together, other times it’s just a few steps. Every step is step against the condition, against the MRI, against the doctors that said he would never take those very steps.

I don’t know what these steps will become or how soon. What I know is that a no medical report or series of terms and diagnosis’s can limit what the human spirit can accomplish. What I know for sure is that giant steps have the power to inspire, the power to give hope to those who have given up their own fight. I know that giant steps have the power to change the world.

Scott

Tags Cerebral palsy, Faith, Hope, Special needs

Categories Uncategorized

The short bus

September 1, 2011 //

I originally posted this in 2011, I am reposting in honor for all those without a voice.

The short bus

I am the father of a special needs child, that rides a special needs bus, and goes to a special needs school.

The special needs bus is a bus filled with hope, filled with redesigned dreams. As a parent of a special needs child that bus represents life, it represents a struggle that encompasses every hour of every day.

The special needs bus is filled with kids that have faced and beaten odds that most people will never have to think about let alone face. Kids that were never supposed to make it, that had been counted out.

The parents that walk or wheel their kids to that bus are parents that have walked the darkest halls and been deep in the belly of hopelessness. I am inspired by the parents I’ve met that for decades have lived the life of a special needs parent. The lack on understanding, the looks and the stares.

The thing about being a parent of a special needs child is that it’s tough to keep your shoes clean, from the tears of pain, the tears of joy, the sanitizer that spills from the countless hospital rooms, and the dust that is kicked up while walking your son or daughter down to the special needs bus.

Tags Faith, Hope, Special needs

Categories cerebral palsy, cerebral-palsy, fatherhood, fathers, mothers, overcoming adversity, parenthood, special needs, Uncategorized

The Optimist

August 12, 2011 //

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.

Tags Cerebral palsy, Faith, Hope, Special needs

Categories Uncategorized

My normal, Max’s good

August 1, 2011 //

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

Tags Cerebral palsy, Faith, Hope, Special needs

Categories Uncategorized