As Mitch inched closer to the abyss he became more emotional. Already physically weakened by the catastrophic muscle wasting of Duchenne Muscular Dystrophy, he was now suffering from low oxygen because his heart was barely working. The heart is a muscle, too. Simple tasks that were once easy for him to perform were now nearly impossible. He didn't understand why Legos were suddenly so perplexing. Even his fine motor skills were greatly reduced. Mitch would weep because he wanted to be a little boy and this invisible monster had not only taken away the strength of his muscles but now his heart, which affected his mind.
In this photo Mitch was trying to build a Lego set that was gifted to him by a Mitchell’s Journey follower. He was so excited to build it and was touched that so many people cared. When he couldn’t make sense of the instructions he began to weep. I immediately set my phone down and held my son in my arms and kissed him and told him Daddy would help him. Mitch eventually calmed down and asked, “Dad, why can't I build Legos anymore? They are so easy. I don’t understand.” I responded softly, “Oh, Mitch, your heart is so tired and in need of rest. And your mind needs your heart. Because your heart is tired, so is your mind.” Mitch closed his eyes and rested a while. I wish I could have held him in my arms forever.
Mitch was remarkable in his fight to survive. His hospice nurse was startled how his body fought valiantly compensate for organ failure. “Your son is a fighter”, she said, “one of the strongest I've ever seen.”
Fast forward a few weeks and I would be reeling in grief over the death of a little boy who was in many ways a best friend to me. Though I was his father, the little boy in me lost a dear friend, too. And that hurt. A lot.
Then, in May of 2014 I received an email from a woman on behalf of her adopted son, Marco, who was an MMA fighter. She said her entire family was touched by Mitchell’s story and wanted to help raise awareness in honor of my son. She asked for permission to put Mitchell’s Journey on his T-Shirts, fight shorts and banners. I gave them permission and sent her the logo files so the printers could do it right.
I wasn't sure what would come of it, but something inside me felt it was right. A few months later I would then watch as this good man stand in a ring surrounded by a crowd of cheering fans. Marco had a look of determination in his face that was sharp, fierce and focused. By his mannerisms it was clear he believed deeply in God and wanted little Mitch to know he was fighting in memory of him. At that point the outcome of the fight didn't matter to me … for Marco already won. The bell would ring and in less than 2 minutes the fight was over and Marco was victorious. He fell to his knees and thanked God for the wind behind his sails.
What happened next brought me to tears. Marco would then take the microphone, undefeated, holding his belt and thanked God, his team. He then asked 14,000 people to look up Mitchell’s Journey and learn about a little boy who died from DMD.
Tonight, an hour from now in fact, Marco fights again in honor of Mitchell’s Journey and other boys who have DMD. What these boys lack in physical strength, Marco has in spades. That he gives his talents and strengths to the benefit these boys … and in honor of my boy, my best little friend, humbles me to my core.
Unlike Mitch, Marco has all the muscle and strength anyone would ever need. But Marco also has a heart … and a most sincere one at that. Regardless of tonight’s outcome, Marco, you have already won. From the bottom of my heart, thank you for remembering my son.
One more thing ...
There is another group who fights just as fiercely and honorably as Marco. Pat Furlong and Parent Project Muscular Dystrophy ... they tried to save my son from heart failure. I honor them for their continued efforts to improve cardiac care in kids with DMD. Here is a link to their page in honor of Mitch: https://secure2.convio.net/ppmd/site/Donation2;jsessionid=897727A6001B3EB4FE400EF84444784A.app272a?4380.donation=root&idb=1525494756&DONATION_LEVEL_ID_SELECTED=1981&df_id=4380
Night had fallen, and so had our hopes for one more day. My weary, tattered son lay in his bed unable to move and barely breathing. Within the last 12 hours his heart had greatly enlarged which caused his chest to protrude; he looked deformed and it was disturbing to see. The candle of life was dim and flickering by the winds of change. I could feel the coldness of death lapping at my feet and I was terrified. Even though night had long since fallen, more than the sky was dark.
I had dozed off on the floor of Mitchell's room, next to my wife. Fatigue had taken hold of me ... I was so very tired. As I was beginning to drift into a deep sleep I awoke with a distinct impression to tuck my son in - something he asked me to do every night. "Hey Mitch ..." I said in a soft whisper, "I'm tucking you in, just as you like it. I love you son, so very much. Don't be afraid; remember what we taught you. Everything is going to be okay."
I'm told that hearing is the last thing to go for those who are dying. For reasons I have earlier posted I know my son heard me. Those were the last words Mitch heard in mortality. Within 30 minutes of that gentle whisper and kiss on his face, my precious little boy passed away. I hope he wasn't scared. I hope.
We've also been told that children who are about to pass away often wait for their parents to leave the room or they linger for permission to go because they don't want to hurt or disappoint. Knowing this, I wanted my weary son who so fought valiantly to live; this little boy of ours … who always wanted to make us happy … I wanted him to know that we loved him and that all would be well. No sooner had I drifted back to sleep Natalie had got up from the floor to administer Mitchell's medicine, which he was now receiving every two hours.
I'll never forget the sound of Natalie's voice. Her words pierced the silence of the room like a samurai sword through paper: .... "Chris." Suddenly, with the thunder of 1 million exploding suns, I awoke that instant only to see a mother's face that looked confused, scared and deeply bereft. I got up from the floor by Mitchell's bed and placed my hand on his chest. Nothing. Our precious son, our broken baby, was gone.
We could scarcely believe our eyes. Lying on Mitchell's bed was the form of a little boy we raised since birth and loved with all of our hearts. His body was still warm and it seemed as if we could just shake him a little as if to wake him from a deep sleep and that all would be well. But Mitch had fallen into a sleep from whence there is no return.
As each hour passed we could feel his arms and legs get colder. Soon, only the center of his chest was warm and it was cooling quickly. Then his body started to change. At about 3:45 AM I called the funeral home to pick him up and they were at our home within an hour. I asked them to hurry because I wasn't sure I could watch my son's body continue down the path it was heading.
Processing the death of your child is something of a bi-polar experience taken to the greatest extremes. One moment you feel peace then suddenly you confront feelings of horror – the likes of which you've never known.
With all the lip service we give our religious beliefs, there is nothing so exacting as to see your child die and then to peer into the dark abyss of death. I have been taught that: "Faith, to be faith, must go into the unknown ... must walk to the edge of the light, then a few steps into the darkness." My son's journey, Mitchell's Journey, has forced my wife and I to step into the darkness … a darkness that is as heavy as it is pitch.
Yet, I've discovered something in all this darkness. Once I allowed my spiritual eyes to adjust and look upward, I started to see the stars. Against the backdrop of all that is black and frightening I can see little flecks of light, tender mercies that were always there but I didn't have eyes to see them. And the accumulation of these tender mercies present themselves like heavenly constellations so I can find my way. If I look down or to the side, all I see is darkness. Like ancient navigators who looked to the heavens for bearing I can see the fingerprint of God in all that has happened and I now have a sense of direction. I know we're not alone.
To be clear, it is still nightfall and my heart is heavy with a sinking sorrow. There are days that are blacker than black and the waves of grief threaten to pull me under. But when I look to the heavens I can see.
I can see
As Mitch began to drift away I would look at him with a deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to some place safe. A place like the children’s books we often read to him – a place of hope and happiness, joy and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day and I was greatly pained therewith. When I took this photo I had the distinct impression we were no longer counting the days, but the hours.
I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, “I am so sorry this is happening, son. You are so brave. I think sometimes God sends us little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you.” Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.
While Mitch slept, I wept.
I wept so hard the bed was shaking and I worried I would wake him. The grief I knew then was but a foretaste of the grief to come. For death was the easy part … the echoes of emptiness and longing were a more painful hell yet to come.
I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead I learned to turn my ear heavenward; to listen for secrets to the soul and learn what I was meant to learn. Too often people get hung up on asking the wrong questions – and therefore get no answers. They ask “why would God do this?” When we hurt it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we're being singled out or treated unfairly. But the last time I checked, life isn't fair and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of afflictions. In the few minutes it might take to shake our fist and complain about or own lives, hundreds of people will have passed from this life to the next and a great many more will mourn their absence. The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.
At least for me, I've come to discover suffering and sorrow are an important part of life’s learnings. Any more I worry less about the origins of my sorrows – for what difference would it make? Surely God isn’t caught off guard or surprised by the events in our lives. Whether He’s the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion … He could change the course of our sorrows if He wanted to. That He often doesn't, sends a compelling message. The question I ask myself is, “Am I listening?”
So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description that left my soul weary, bruised and weak. I didn't want my little boy to go, for he was my tender son and I loved him so. Though I prayed mightily for his safe return, the answer I received was “No, my son, for there are things you must learn.”
Thus began my journey with grief, down a bewildering path in search of relief. And though I still hear the deafening sound of death’s terrible toll, I have come to understand our mortal bodies are but clothing to the soul.
I had a moment of truth in my life many years ago. I was lost in a different kind of wilderness – not a wilderness of grief and sorrow but a dark wilderness just the same. The path before my feet was shrouded in a deep fog and for a while I didn't know if God even lived. I understand what atheists think and feel and I have explored their arguments and logic, none of it is lost on me. And, for a season, I suppose I was counted among them. But then I made a choice to truly open my heart, mind, and soul to the possibilities and something remarkable happened.
So while I was wandering in the wilderness of doubt and darkness I remember searching for peace and understanding and for light. After months of study, soul-searching and preparation I remember kneeling at the side of my bed as a young college student and asking my Father if He was there if He even existed in the first place. That very moment I was overcome with an impression I cannot describe. It was at once distinctly spiritual and at the same time deeply emotional. I knew the difference between the two. One thing’s for sure, it was undeniable and not of me. There I knelt as a young, broken and once-confused 18-year-old and I was given eyes to see and a mind to comprehend. I wept. And I wept. I came to know with a certain knowledge that day we have a Father who lives and loves us … and all that happens in this mortal place is for a greater purpose. That experience and a few others that followed prepared me for darker woods yet to come. Darker, in fact, than I had a mind to imagine. Only the next time I journeyed in the wilderness I had a candle that I might see.
Fast forward more than two decades and I found myself on the edge of my son’s bed as he folded his tender arms and said a prayer of his own to his Father … our Father. He had a week to live and despite the heavy burdens he shouldered, this little boy carried a heart overflowing with love and gratitude. I remember watching little Mitch humbly fold his arms and close his eyes as he spoke with his Father in a spirit of deep thanks. He asked for nothing. Once again Mitch reminded me of one of my favorite sayings, “Gratitude turns what we have into enough.” For Mitch, he always had enough.
I realize that I speak of my personal faith in God often. It is never my intent to sound preachy, fanatical or pretentious; I am only sharing my experience and feelings as they truly are. Why I do this publically, I still do not know. One of the reasons I write of God is I think it’s difficult, if not impossible, for anyone to peer into the deep abyss of death and not contemplate what’s on the other side if anything at all. In my estimation, the reality of God is either child’s play or it is the only play that really matters.
So, as I knelt at my son’s bed, hearing his soft voice and even softer sentiments, I wondered in my mind and heart how my little boy so broken could be so put together. This little 10-year-old was a towering example to me that I can smile even when all seems lost. He showed me that though broken, I needn't fall apart. Suddenly I remembered that experience kneeling at my other bed so many years before and I felt an echo of those same heavenly impressions again.
In what seemed the blink of an eye from this little moment, I found myself broken-hearted and struggling to breathe at my son’s funeral. While preparing for the funeral I asked a dear friend of mine, Kenneth Cope, a talented musician and man of faith to sing one of his songs at Mitchie’s funeral. He was so kind and gracious and performed, “Broken.” Here are the first 3 verses:
Broken clouds give rain
Broken soil grows grain
Broken bread feeds man for one more day
Broken storms yield light
The break of day heals night
Broken pride turns blindness into sight
Broken souls that need His mending
Broken hearts for offering
Could it be that God loves broken things
I loved that song when I first heard it. I loved it even more when my friend sang this song at my dear son’s funeral. As I listened to his inspired words through song, I couldn't help but think about why we break and what comes of it. Although my son’s broken heart touched mine –in truth, Mitchell’s broken heart broke mine.
I am grateful my friend Kenneth gently reminded me broken things can give way to better things. I am grateful Mitch taught me though we may break, we needn't break apart. And I am thankful for my Father who has shown me time and again, broken things can indeed mend ... and often, to a much greater end.