As Natalie lifted Mitch from the floor, she looked intensely at the Milrinone pump to ensure it was still giving him the life-lengthening drug. Mitch, having lost his balance, leaned back only to find his loving mother's arm to keep him safe.
Unaware the mortal trouble he faced, Mitch looked down at his furry friends and wished he could roll around with them like they did with each other. This sweet little boy had attached a small stuffed animal to a string of yarn so he could dangle it from a chair. His back muscles were too weak to bend over, were he to try to pick the toy up from the ground. Little Mitch discovered other ways to squeeze a little more life out of life.
If children only knew what they do for parents ... sometimes I wonder who really raises who. Though we teach our kids how to walk and talk, they teach us about what really matters in life. It is something of a paradox that it takes a child to show us how to grow up.
Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.
I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.
On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.
Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.
The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.
I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.”
There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true.
But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.
I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.
Yesterday was a day of laughter and smiles, memories and gratitude. Before the sun was about to set I asked my oldest son, Ethan, if he wanted to go on a quick adventure with me. He said “sure!” and we drove off in search of an empty field. I had suspected we’d find some unique, natural light as a storm had broken and the sun was beginning to fall behind the hills. Sure enough, we chased the light and saw a most unique sight. I couldn't help but think this photo I took of my son a metaphor for a great many things.
Ethan and I started to talk about life. Often, on his own, Ethan will bring Mitch up in conversation. Talking about our fallen family member is neither forbidden nor encouraged … we allow our family to talk about whatever, whenever. If something on their mind or heart, they’re free to speak it without judgement, prejudice or impatience.
He said, “Dad, I think I know why I was born into this family. Well, at least one of the reasons …” Ethan thinking deeply about his present and his future, continued, “I think I was supposed to have Mitch as my brother so he could teach me things I needed to know.” Ethan loved Mitch; they were the best of friends and had a lot in common. When I think of the many tender mercies along this journey, the pairing of these two young boys as brothers is nothing short of divine. They did so much for each other. Though I frequently sorrow over the loss of Mitch, I am eternally grateful he was part of my family’s life.
After our father-son adventure last night, we retired to our rooms. I was awoken in the middle of the night on another matter - and I didn't really go back to sleep. I thought to write my son a message the likes of which I wished had been written to me when I was his age. These are some of the things I wished I had known at a younger age:
SEEK PURPOSE OVER PLEASURE
Seek purpose over pleasure. Pleasure and momentary happiness are always, always fleeting; as opposed to things eternal, like purpose and meaning. If you seek after purpose and meaning, you’ll learn to see past hardships and sorrows; undaunted by troubles you’ll encounter today or any tomorrow.
THINGS MAY GO TERRIBLY, HORRIBLY WRONG
Despite your best efforts, life will be hard. In fact, it may get more difficult than you have a mind to imagine. Things may go from bad to terribly, horribly wrong. Just remember you are eternal. You are not your body – you are a soul capable of a greatness that, as yet, you do not have a mind to know. Every mortal moment is an education to your soul. Listen, watch and learn. And, if things go terribly, horribly wrong … remember that, in the end, all things will give you experience and will be for your good. Just hang on. Even if only by a pebble. Hang on.
HURT PEOPLE, HURT PEOPLE
You’ll invariably meet people in your life who’ll try to hurt you. These people will confuse the darkness in their own hearts for your motives. Always remember what Anias Nin wisely observed: “We don’t see things as they are, we see them as we are.” You may encounter some who foam at the mouth in rage toward you. Though bizarre, ignore them. They will be as a lit match: full of fury and fire for a moment, but short lived. Let there instead be a fire in your soul – not of hate and fury, but of love and light. It may blind those in darkness, but will help those with sight. Not for any reason should you hide your light.
BE KIND, NOTHING ELSE MATTERS
Be gentle and kind to others. Your little brother taught our family that at the end of the day, if you are unkind, nothing else you do in life will matter.
YOU ARE LOVED
Although the skies may draw black as night and storms may threaten to devour you … know that you are loved: both by a mother and father on earth and by heaven above. You are, dear child, utterly and completely loved.
This and so much more, I would write my son to prepare his mind and heart for the for the years to come.
My son Ethan’s journey is inextricably woven with Mitchell’s Journey … and not because I write here, on Facebook. Though I write intimately of my grief journey, our lives at home are not saturated in sorrow. Rather, we are happy, moving forward and finding purpose in each day. Ethan’s journey is enjoined with Mitchell’s Journey because he was his brother and his life and death has altered the course of ours. In fact, Mitchell’s Journey is everyone’s journey who might choose to take something from it.
As John Donne wrote, “No man is an island” … to his insightful prose, I would add we are all part of something so infinitely grand … a spiritual ecosystem so majestic in scope and purpose … were our eyes unveiled, we would finally understand things as they really are and we would weep tears of love and gratitude. We would love our enemies, do good to those that hurt us, and fall on our knees in sorrow for those who we might have hurt. We would accept our life's struggles as a necessary crucible for growth and change.
It wasn't long ago my dear wife came into my basement office and handed me a sealed envelope. It was another breadcrumb left behind by our tender son that had been sitting in a small stack of papers waiting to be organized. On the front of the envelope was Mitchell’s handwriting in purple crayon addressed to his best friend Luke. As my wife gestured me to open it, my hands trembled a little. Actually, they trembled a lot. This undelivered letter was from Mitchie’s last real birthday (April 29th 2012).
As I opened the envelope and then the carefully folded paper, I felt that all-too-familiar lump in my throat begin to grow. Swallowing suddenly became difficult and the air became as thin as Jupiter's. The last person to touch that paper was my dear son – and my fingers trembled with grief. Mitchell’s sweet letter read, “Dear Luke, I am so sorry. Will you still be my friend? I really want to play with you. :-) I really want you to come to my birthday party this Friday.”
Beneath the hand written letter were balloons for those he invited or near to his mind. Included were his brothers and sister, and Derik and David (two young boys who live just down the street). Floating above the other balloons were two; one for Mitch and another for Luke – as if to symbolize their special friendship and olive branch. As if his carefully drawn artwork weren't enough, Mitch re-traced his letters with different colors to show that he really cared. I love children.
Mitch and Luke almost always got along, but because they were human they also had disagreements from time-to-time. Clearly, this was one of those moments. A childhood indiscretion was noted, a soft petition for forgiveness was made … and my heart swelled to see the innocence of children on display.
In the grand scheme of things their disagreement was hardly a speed bump … but to Mitch, a young boy who treasured his relationships, it was a mogul turned mountain and he wanted to make it right. Luke, was ever the faithful, forgiving friend to Mitch and they always seemed to bounce back quickly if there was ever a disagreement on either side.
I’ll never forget when Luke stood at the foot of Mitchell’s bed the evening before he passed away to say goodbye and share how much he loved him. That was a moment that brought me to my knees and broke my soul into smithereens. Never had I seen a more powerful gesture of brotherly love among humans. I pray that I never have to see such a sight again.
I admire the absolute goodness of children. If only adults could be as grown up as our little ones are at times. Emma Goldman wrote, "No one has yet fully realized the wealth of sympathy, kindness and generosity hidden in the soul of a child. The effort of every true education should be to unlock that treasure." At least to me, this handwritten note from my son (a letter that could have been written by any one of your children), is a master class in what it means to be human. Mitch and Luke taught me through crayon and pencil that to forgive is to truly live.
Any more, it seems the older I get the more I find myself trying to unlearn what the world has taught me and re-learn what children demonstrate so naturally.