It was April 2012, Mitchell’s last spring, and we were about to head home from our annual Easter trip at our family ranch. A few weeks prior I had returned from a business trip in Honduras and was so glad to be back with my family. The US State Department issued a travel warning indicating the risk was critically high, having the highest murder rate in the world. While there I was careful, but I found the people of that country beautiful, kind and my heart went out to them. I fell in love with their people and wished only to help them. Coming home was especially sweet because I realized how blessed I have been. The lyrics to the song “Because I have Been Given Much, I Too Must Give” kept playing in my mind.
While I have enjoyed traveling the world a little, I have discovered how much my family is my world. I would sooner explore the peaks and valleys of family life with them than visit all the wonders of earth.
As I took this photo of my kids I remember feeling the genuine, unrestrained love among these children. My heart sang. Mitch surrounded by siblings and a cousin proudly wore the soccer jersey I gave him as a souvenir from Honduras. Unlike his siblings, Mitchie would wear his souvenirs long after my other kids moved on from theirs. It wasn't that my other children were ungrateful; Mitch just had a heart that was more sentimental than the average person. While he loved getting things, he appreciated the meaning behind things even more. You could give him a paperclip and say, “I got this for you because it reminded me how sweet you are.” Mitch would treasure that simple paperclip as an emblem of affection. Sweet Mitch was the keeper of many virtues; chief among them, gratitude. I love that little boy.
At this moment I had no idea we would have less than a year with our son. No one handed me a memo that read, “Mind your moments, it’s later than you think.”
A few weeks from this photo we would get just such a memo from Mitchell’s cardiologist that read, “Beware: Mitchell’s heart is in trouble.” We had hope medicine would slow the catastrophic muscle wasting to his heart, but we were awakened to the harsh realities of DMD, once again. I remember not sleeping well the night we got the first memo. I went to my computer and put this video together. (vimeo.com/42931543) In many respects, this was my first real post on Mitchell’s Journey. Sure I’ve back-dated some early photos, but this was my first, clunky attempt at sharing the gravity of it all.
Within six months of this photo, we would get second memo that our son was in serious trouble and was at risk of sudden death. Within 10 months, a memo our son would die any day. Then, a few weeks later, the end.
I wonder how often life has handed me a memo and I ignored it because I was too proud, too preoccupied or simply chasing squirrels. I have always tried to manage life’s memos, but being human I am sure I missed some. I know I cannot change the past, redo missed moments, nor can I undo my mistakes however big or small; but I can own my moments … from this moment to forever. I get it now. I got the memo.
I cannot wait for the day I get the memo that says “Your son is just around the corner.” For I will run to him with paperclips and kisses and a heart overflowing with love. I think I will cry. Forever.
It was the end of a long day at Universal Studios in Florida. We were about half-way into Mitchell’s Make-A-Wish trip and he was having the time of his life – and so were we. Attached to my camera pack was a carabiner that tethered gifts and other souvenirs we picked up here and there – but that wasn't the real gift I carried this day. The greatest gift was my family – and that wasn't lost on me … not for a second.
As we made our way out of the park Mitch drove his scooter near me, like he always did, and reached up to hold my hand. I loved holding his hand and I yearn to do it again today.
I always dreamed of being a father. I loved my kids long before I ever laid eyes on them. As a young man I used to wonder what they would look like, the conversations we might have and the adventures we would enjoy together. While other boys were catching frogs or setting fire to empty fields, I dreamed of being a dad. Oh, I've had my share of youthful shenanigans and misadventures. I've even caught a few frogs and set a few fires. But my heart always wondered what fatherhood would be like.
I remember early in my professional career overhearing some of my older colleagues talk to their kids on the phone. I was young and single and would act like I wasn't paying attention but I was listening and I wondered what it would be like to have little kids of my own. While not an envious man, I was sometimes sorely tempted when I saw others with children. I was so excited to have kids of my own.
Twenty years later I have found my wish granted beyond my wildest dreams. Although my cup is cracked and tattered by grief and sorrow, it is overflowing with love and gratitude.
There’s a saying: “The greatest gift you can give someone is your time. Because when you give your time, you are giving a portion of your life that you’ll never get back.” I’m not always the best at this. But I try. And when I fail, I try harder the next time.
I don’t know a lot of things. But one thing I do know is when I am old and dying I won’t be reaching to hold on to car keys, fancy things or any thing. Instead I’ll be reaching to hold the ones I love. For they are my real treasures - and that won’t be lost on me. Not then. Not now. Not for a second.
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.