I loved it when Mitch sat on my shoulders as a little boy. When I look at this photo I can almost feel his little hands on my face again and my heart is awash with love. But then the tears come – I cannot stop them – and they wet my face and remind me of what once was, but is no longer. I still close my eyes and reach to feel his little hands on my face sometimes.
Sometimes.
On this day Mitch asked to sit on my shoulders so he could peer over the fence in our back yard and wave goodbye to his big sister who was walking to school. The fence was just tall enough that I couldn't see over it, not even on my tiptoes. But once on my shoulders, Mitch could see the brave new world just over the fence. A world he could always hear but couldn't see. Once on my shoulders he would tell me the things he saw. He would yell out as if to say “Dad, this is awesome! If you could see what I see!”
“A bus!” he would say excitedly. “A twuck!” with another excited burst. To little Mitch the world just over the fence was a smorgasbord of sights and sounds that captured his imagination. When he saw his sister come into view he would bounce up and down on my shoulders and point to her yelling, “I see her! I see her! I wuv you Ash!”
Though I couldn't see his smile with my eyes I could feel his smile with his hands on my face – and my heart grew a foot or two. I then grabbed his hands and pressed them into my face as if to hug him. These are the moments I live for. These are the moments that warm my heart and calm my soul.
My sweet wife, who recognized I was always behind the camera and almost never seen in a scrapbook, took some photos of us that morning. Photos of Mitch and me are rare by comparison to the number of photos I took of everyone else. So I treasure these photos with my son greatly.
We would discover a few weeks from this photo Mitch had a catastrophic muscle-wasting disease that would hurt him, cause great hardship, and eventually take his life. I cannot count the nights I sat at our kitchen table weeping for my son, reading everything I could to understand DMD and trying to prepare for the inevitable journey through the wastelands of grief and sorrow.
I was unaware we were nearing the end of an era for our family. An era of relative peace and ease; an era free of the sorrows we would soon know and then carry the remainder of our days. Oh, I had become acquainted with the sorrows of death – for my father passed when I was 19. But a father is no son; and losing my child has broken me in ways I never imagined.
My son’s journey has taken me on a most unexpected path – a path I was scarcely prepared to sojourn. Were I given the choice I would have taken any path but this. For I have nearly drown in a sea of sorrow, I have stumbled through my wilderness of grief, and I have peered into the depths of the abyss. The loss of my son has become my Everest and I intend on reaching the summit.
Perhaps after a trillion of my own tears have fallen to the earth, when my weary legs and broken heart are about to collapse … when I reach the summit of my Everest … perhaps, then, I will begin see what Mitch sees. A brave new world. A world I can hear with my heart – but I cannot now see.
Marlie, who once brought great comfort to Mitch, now brings a measure of comfort to us.
Only a small measure, but a measure nonetheless.
For that I am grateful.
What you see here are two prototype books of Mitchell’s Journey: Essays on Hope, Healing and Finding Happiness. For the last 6 months I have been quietly putting these together.
This isn't a ploy or an attempt exploit my tragedy – any suggestion of such is foolishness. One need only read this page [even superficially] to know I would rather give to others freely, to lift a heavy heart and love others more than anything. I take no delight in having put these together – in fact, these two bodies of work are the product of deep agony, many tears and a heart that stretches toward the heavens in search of peace. I would have given my life to never have cause to write. I just want my little boy back – and I am pained that I cannot.
Some have commented that there is no need to write a book – for each entry here would seem to suffice – at least it would seem their cup comfortably. Others respond in-kind that a book would reach others who do not use Facebook.
I am going to try to do things with Mitchell’s Journey that are calculated to bless others’ lives – and some of you may want to participate. I am not interested in income, I have a job. But I am interested in outcomes. For every heart that’s lifted, for every life that is blessed, my heart bursts with gladness. I believe the old aphorism “a rising tide lifts all boats.” And as the tide of awareness rises, others who have DMD will surely benefit.
There are still miles to go with these books. I don’t even have a publisher, yet. I approach this task with a measure of trepidation, for I am the weakest of all. I recently wrote in an earlier post that I am no teacher, I’m just a student with a heavy backpack. These books are my homework … homework of my soul. Each page soaked with salt and tears.
Between now and when I find a publisher, I will focus on the purity of Mitchell’s Journey and its message of hope, healing and finding happiness. When the time is right I’ll take the next step toward publishing. But for now, for those who are curious and have been asking, know that I am working on this – not for me, but that others may be blessed. I am also working on a few other things that I will share in due time. Things, too, I hope will bless lives.
A portion of the book sales will be donated to Parent Project Muscular Dystrophy (PPMD), the organization that raced to try and save Mitch. Another portion will be reserved to help Mitchell’s Journey accomplish its own mission, which is not only to raise awareness of DMD but to share a message that transcends life and death ... a message of love, family and faith.
There was no master plan with this journey. It was just a simple Facebook page with 80 followers who wanted to keep tabs on my son. In the grand scheme of things, this page is just a pebble in a vast ocean; certainly nothing to boast about. But if this journey can help raise the tide of awareness an inch or two, if it can lift a person out of despair, or to help someone see the world with new eyes … then it is all worth it.
I really don’t want any of this. I would rather be invisible if that meant I could have Mitch in my arms, if I could kiss his cheeks and hear his voice. That is what I want. But such was not my lot. I was given a different lot, and a heavy lot it is.
Though my heart is broken I have hope. Each day I am healing and finding happiness. I hope, through Mitchell’s Journey, others do, too.
A year had passed since we learned of Mitchell’s diagnosis and our hearts were still tender. It was mid-July and the hot summer air wrapped our bodies like a warm sweater you couldn't take off. Only the shade of a tree, a soft breeze or a scattered cloud that covered the sun would offer a moment of relief. The sound of insects filled the air. I couldn't help but think of those endless summers I came to know and love during my own childhood; where the woods were vast and deep and perfectly camouflaged the forts we made of scrap wood and plastic sheets. Those summers I played with my friends deep into twilight. To this day I can almost hear the laughter of my friends or the voice of my mother calling me home.
The laughter I heard in my mind from yesteryear slowly faded to the back of my mind as the sounds of Ethan & Mitch came back into focus … and my heart was glad. Ethan absolutely loved his little brother, and Mitch loved him. I sat on the grass as these two little brothers romped around like little boys do. I remembered being just like them. In many ways, I still am. At one point Mitch spontaneously grabbed his older brother and kissed his cheek. Ethan instinctively wrapped his arms around him and hugged Mitch with all the love he had. Suddenly I thought to myself, “Now this is a life worth living.”
Although the future frightened us, we made a conscious effort to let tomorrow be – for we understood that to give in to worry and stress would rob us of today – and today was all we could count on. It wasn't easy. It took practice. But each day we became a little better at it. Each day we got a little better at living. A little better at loving.
It was about this same time in my life I was having a conversation with a dear friend about hardships and our experience with Mitch. He said, almost in passing, “Life is tough. And then your chocolates melt.” Although he wasn't trying to say anything profound, I was taken aback. I quickly wrote it down and committed it to memory. Bruce Newbold, my dear friend who has also become teacher to me, made a profound acknowledgement that life is hard and sometimes it gets even harder.
Yet despite my sorrows, life is still worth living.
When Mitch was 3 years old he was given a death sentence. My wife and I could have wasted away our days in fear of the inevitable. But at some point we realized life is also fatal – and none of us can escape it. The point of life isn’t that we escape death, but that we learn how to live it while we have it. And to live a life of love and service is life worth living.
As I said in a post last December, losing my son has been the bitterest of cups; it has turned my life upside down, but right-side up.
It isn't possible to count the many pieces of my heart that are still broken and scattered about – for they are without number and seem to stretch out for miles … even to infinity. But I am picking up each tender piece as I find them and washing them with my tears and putting them back where they belong.
And while I search to heal my heart, I have discovered each time I love or serve someone my heart heals a little – and that makes life worth living, too.