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.
At about 8:15 last night we had a special visitor at our door. This was the woman from Alaska I spoke of in my funeral address. We were excited to meet her in person, for she played an unexpected but important role during our darkest hours. Once a lamp unto our feet, as the path we tread was dark and treacherous, this compassionate woman was now a light to our weary hearts.
After we spoke for while we showed her Mitchell’s room which has been relatively untouched since the time of his passing. I stood in deep reverence of these two mothers who loved and lost their boys. While my heart cries out in agony over the loss of my son, I recognize that a mother’s pain is different and deeper than that of a father’s. For they gave their child life and carried them in ways only a mother knows.
A little over a year ago I sat at the foot of this very bed, trembling and in tears as my son was sick and dying. It was in this very place we received emails from this inspired woman who offered insight and council that came from her own experience.
It seemed rather poetic that this woman, once a stranger to us; a woman who spoke peace to our hearts during the darkest time in our lives was finally in that same room. The thought of such a reunion had never entered my heart or crossed my mind. Yet there she was, once again, like a gift from heaven.
Why do we suffer? Why do we stumble and fall? So we can learn the deeper meaning of love, compassion and service. For without such, we wouldn't know much at all.
My heavy heart once hung by a single tattered thread. Now it hangs by a thousand threads of light. A thousand tender mercies … a thousand things that give me sight.
I have had many, many people reach out to me in the last 48 hours, each carrying heavy burdens of grief of their own, trying to make sense of their own sorrows. My heart goes out to everyone who hurts – because I hurt, too. While I don’t repost my essays, I felt it would be useful to share this again because of the many private inquiries regarding my thoughts on God and suffering.
The following is my original post:
Mitchell’s final days were so very hard. We had learned that excessive sleeping was a sign that death was near, and he began to sleep more and more. Perhaps what makes my son’s passing additionally hard for me is there was no formal goodbye. It wasn't like he was boarding an airplane, or car, or a boat – as if to go on a long journey. There was no clear demarcation where I could give him a hug and look him in the eye and say “This is it, son. Oh, how I love you. Thank you for being such a good boy and I am so proud of you. I’ll see you soon.” He was awake and talking one moment, then he just drifted back to sleep and never woke up. By the time we realized what was happening, it was too late, and he was unable to open his eyes or talk. I know he heard us the night he passed because he could squeeze our hands in answer to our questions. And that night we did tell him we loved with all of our hearts as we wet his hands and face with our tears. But my heart and soul wanted more.
For reasons I do not understand, this was my son’s journey and I wish with all of my heart I could have taken that journey for him. But such a path was not part of God’s plan for my son or my family. My son’s death has taken my own heart, a heart that already cried at commercials or subtle acts of kindness, down a path that has caused it to be tenderer, still. My broken boy broke me. But I am putting myself back together once piece at a time.
A colleague said to me recently “There are two types of people in this world: those who admit to being broken, and those who don’t.” A poignant reminder that we are all mortal and there are always broken things to mend.
When it comes to the death of my father or my son’s disability and death, I have never experienced anger. I’m told anger is a necessary part of the grief cycle – but I feel no anger. At least for me, I have accepted those hardships as something from which I am meant to learn. What’s more, what does anger toward God profit a man? I have seen what the fire of anger can do to one’s self and to others; it consumes and destroys. Water, on the other hand, renews and gives life.
So while my soul trembles with grief and sorrow, I don’t shake my fists at God; angry at the burden we must bear. Instead, I kneel before Him and ask for mercy as I stumble to learn what I must. And while I weep because I miss my son terribly, my heart is also glad that I was blessed to be his father. Some of the greatest blessings come at the greatest price.
As often as possible I will trade fire for water; anger for tears. Instead of scorching the soil of my soul, I will water it with my tears and hope to grow.