As death circled about, Mitch began to sense the end was coming and started asking questions. Natalie and I did all we could to comfort our son and answer him honestly and compassionately while at the same time not frightening him.
One evening, while he was home on hospice, Mitch and I were in our little movie room in the basement making popcorn. Mitch sat in a chair next to me because he just wanted to hang out. At one point Mitch pointed to a carbonation machine standing on a counter-top that turns water into soda. Just before he was admitted into the hospital he tried a drink from that machine for the first time. He asked me, “Dad, is that what hurt my heart?” My heart fell to the floor as I slowly knelt down and looked him in the eyes and said, “No, son. I would never let you take anything that would hurt you. Your heart is broken because of Duchenne Muscular Dystrophy. Your heart is a muscle, just like your arms and legs, and it is getting weak because of DMD.” A look of sadness came over his face as he tried to come to grips with some harsh realities. There was a little boy who just wanted to live and love, to raise a family of his own and to be a dad. None of that would happen for him.
I simply didn't know what hard was until I had to tell my son he was going to die. Every conversation I once thought hard is but a shadow now. A whimper.
Not long after my tender conversation with Mitch, Natalie came into the room and he started asking more questions about life and death. Natalie knelt down and hugged Mitch gently. My little boy leaned his head on his mommy’s shoulder as she comforted him in ways only a mother can. I had to turn my head so I could wipe the tears from my face. Tears that were streaming down my neck.
Over the coming days Mitch would ask questions about what’s on the other side. It is one thing to talk of life after death in church or in the abstract, it is quite another to come face-to-face with it. Death is bewildering.
As Mitch and our family journeyed through the dark wilderness of fear and loss we had strong impressions that so much more was happening. So much more than we realized. Mitch felt it. Natalie felt it. I felt it. Each independent from one another. Mitch talked about his impressions and quiet whispers to the soul. On a few occasions I shared with him some sacred experiences I have had in my life that have shown me there is life after life. I don’t need to rely on anyone’s beliefs – I know for myself, independent of any external source. I looked Mitch in the eyes and bore my soul to him and assured him that we are not alone. The spirit of those conversations were almost palpable.
I wish such a knowledge lessened the pain of loss. It doesn’t. Although I know some things for sure, that doesn't keep me from missing little Mitch with all of my heart. I long for my son like a weary traveler thirsts for water in a barren desert. It is that longing for him that drives me to live a life such that I might see him again.
In my life’s journey, I have come to understand that to know what is on the other side requires a change from the inside. Though I know certain things to be true, I still have a lot of work to do – so many things to change and mend because I am human, deeply flawed and the most broken of all men. But I try. God knows I try. I pray that I never get swallowed up in pride and lose sight of what’s on the other side.
As I wrote not long after Mitch passed away, “There is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”
Just a day before Mitch went to the hospital for heart failure, a friend and colleague of mine came by our home to offer Mitch some cheer. He was aware Mitch was in trouble, but none of us had any idea death was scratching at our windows. The next morning we would find death violently gashing at our door while we rushed our son to the hospital.
So on what seemed an ordinary Saturday, this noble man brought his wife and children with him; they didn't stay long … just long enough to let my son know they cared about him. They seemed excited for Mitch because he had his very own puppy. It seemed for a moment their joy was connected to Mitchell’s.
Reflecting on this experience I later wrote in my journal, “Nothing is quite so revealing as the origins of someone’s joy. If a person takes greater delight in the triumphs and happiness of others, more than their own indulgences, you have found a noble soul. This man is a noble soul.” It seemed for a moment, at least to me, this good man and his family found joy in watching Mitchell’s joy … and that moved my soul.
Because this man is modest and humble, he wouldn't want me to mention any of this … let alone something he did for Mitch a few months prior. But the gratitude in my heart cannot stay my tongue; what he and his family did for Mitch was simple but profound. Upon learning our son’s heart was in serious trouble a few months prior, Spencer and his family made Mitch the most intricate and thoughtful collage (about the size of a poster) that included funny sayings and images of Mitchell’s favorite things. It was clearly a labor of love - and such labors are worth more than anything money can buy. When Mitch first saw this hand-made poster he studied it for what seemed an hour. He was so touched that they thought of him. Mitch laughed at the funny things they wrote and he was visibly touched by nice things they said. That simple poster was a gift from the heart and it touched my son’s heart.
Just a few days before Mitch passed away I sat next to my weary son as he lay on his bed lethargic and struggling to breathe. He nudged my arm softly and pointed to the collage that was made with loving hearts and Mitch smiled – as if to acknowledge the kindness extended to him months prior. He didn't forget the love he received back then and it lifted his weary heart at the end.
Once again I was reminded the origins of joy are found in the service of others. Spencer and his beautiful family found joy in lifting and loving – they didn’t seek attention, they just sought to love their neighbor quietly and sincerely. They were my teachers then and they are my teachers again today. For in the quest for joy, simply serve others, there is no better way.
During his final days there were times I couldn't tell whether I was talking to my 10 year old son or a soul that was older than the universe itself. I saw it with my own eyes and felt it in the depths of my soul; something significant was happening. Although my young son was dying, his true identity was emerging and I sensed he was much older than I knew. I realized death wasn't the end ... but it was a painful goodbye, even if for now. Reunion may as well be forever away. For my heart aches and yearns to have him back with me – the way he used to be. That is grief.
As death inched closer the veil between this place and over there became increasingly thin. Those who came to visit said they felt a strong presence in our home. Natalie and I didn't always feel what they felt – we were probably too close to recognize it. Perhaps, also, we were in too much pain. Yet, in our closeness to this sorrow, we saw things others couldn't. Some things I will never share, for they are too sacred. Sometimes I wonder what it would look like were we allowed to see all that is truly happening. Perhaps we might be startled to see all the hands unseen that carry us in ways we do not now appreciate or feel.
There was a point when Mitch asked me, “Dad, is there any other way?” I held my son quietly and I wept. Countless were the nights I begged God for a way out. I pleaded for mercy. I begged for my son. As his father I would have traded places with him without a moment’s thought. I asked God, “Is there any other way?” As I tried to listen to my Father, I was reminded of another One who asked for a bitter cup to pass. Not even He was spared.
There is a saying that reads, “Most people wish to serve God – but only in an advisory capacity.” How oft have I been tempted to think my finite mind knows better than my infinite Father’s? So many times my heart cried out, “Please, not this. Anything but this.” I begged God for another way as though I might devise a better plan. Yet I know I cannot see what He sees … and I am reminded we are not mortal beings having a spiritual experience, but “spiritual beings having a mortal experience.” (Pierre Teilhard de Chardin)
I don’t know much. But what I do know is this mortal life is a place to learn and grow under the tutelage of a Divine Teacher; a place where we learn how to see in the dark and hear the voice of God in our own wilderness. I can see that now. I understand there is no other way.
Yet, here I am talking of pain and suffering as a divine tutor … and I find myself on my knees, drenched in tears, begging for relief, scarcely able to bear the weight of this sorrow. Then a whisper, “There is no other way. Be patient, my son, for you will see more tomorrow.”
There is no other way.
This was Mitchell’s last time at his grandmothers – the place, other than home, he loved to be above all others. I’m not sure if it was the chocolate cake from Costco she would get especially for him, or the small 4-wheelers he could ride into the woods, or if it was the escape from life as he knew it, maybe it was the unbridled love he received – but whatever it was, he wanted to be there.
As we stood at the door and said goodbye my mother reached behind Mitch, who is as shy as he is sweet, and kissed his cheek. I could tell Mitch felt so good inside. I think everybody deserves to feel good inside.
I captured this tender moment with my phone. As we left her place there was a certain heaviness in my heart. I didn’t know where my feelings were coming from – I just sensed something was happening. Something significant. As we drove away I struggled to swallow the lump in my throat. Had I known this was his last trip there, I would have begged to stay another day or two. My mother said after we left she just sat on the floor and wept. Perhaps her soul, not knowing the end was coming, was being prepared for this loss.
It was the last few days of November and the Christmas holidays were just around the corner. I could tell Mitch was excited to see what Santa would bring –but he was even more excited about the gifts he was going to give everyone else. Mitch always gave to others freely. I think deep inside he felt no matter how much he gave, he always got more in return.
Even when Mitch was home on hospice, he spent his hard-saved money on a collection of Warheads (very sour candy) and gave them away. I remember sitting with him on the edge of his bed as he separated the flavors. He softly pointed to the blue raspberry ones and said almost in a whisper, struggling to breathe, “These ones are rare. They’re my favorite.” He then grabbed my hand and put the precious 3 candies in my palm, then closed my fingers and pushed my hand back to me. I said to him, “Oh, no Mitchie, these are yours. You keep them because I know you love them.” As I reached to give them back he pushed my hand back to me with a gentle smile and said, “No, you keep them. And I want you to eat one right now.” My heart sank a little because I wanted him to have his favorite treats, but I realized in that moment that letting Mitch give was the gift he really wanted.
So, I opened one quickly and put it in my mouth. Mitch began to smile and giggle as I puckered and writhed over the intense sour candy that was destroying my taste buds. Mitch finally burst out in laughter as he saw me cry out “I can’t take it!” For Mitch, giving was a win to him. And seeing me almost gag over the super-sour candy was a second win that paid dividends of giggles and laughter.
I still have those other two candies in a special box that contains treasures from Mitch.
Mitch reminds me daily what it means to win. Sometimes life gives us double-wins when everything turns out as planned. Other times we do our best and appear to fail; but if we are honest and do our best we have already won, regardless of the outcome. What is winning, really? It is doing the right thing – no matter the cost. Mitch always did the right thing. And more often than not, he won twice.
With all his double-wins, my little boy lost his battle with life … yet he won his soul by the way he lived it. And, by the grace of God, while I stumble and fall a million times as I chase after my son, I hope to hold him once more. I hope to look into his innocent eyes and thank him for helping me understand to do good and be good is what it means to truly win.