True to the Make-A-Wish tradition, Mitch had just thrown his coin into the wishing pond. I don’t know what he wished, but whatever it was, I hope he got it.
Everything seemed surreal back then. Mitch appeared so normal at the time and the effects of DMD were all but invisible to the untrained eye. We almost felt guilty going on a Make-a-Wish trip because he wasn't profoundly sick. But we saw the storm clouds on the horizon, we knew what was coming and decided to make the most of what strength he had. The decision to go then was a blessing we wouldn't appreciate until it would have been too late.
After little Mitch threw his coin in the water I sat on the edge of the pond then grabbed my son and gave him a big hug and kiss. Wyatt wanted in on the love and I hugged and kissed him, too. Not a day passes that I don’t show and tell my kids how much I love them. Not a single day.
Mitch was a little overwhelmed by all that was happening. As far as he was concerned, he was pretty-much normal and he wondered why everyone was making such a fuss about him. But Mitch didn't know what the doctors knew – that the path that lay at my son’s feet would soon become treacherous and one day his path would end.
When I was younger and envisioned my future, my heart wasn't set on having a big home or fancy cars; I just wanted children to call my own. I wanted to be a father. I have had many professional titles in my life and none of them mean as much to me as father. I would sooner hear the word “Dad” from my children’s voices than any title or accolade the world could offer. I would give up everything I have if that meant I could be a father for one more day.
There is a saying that goes: “the real measure of your wealth is how much you’d be worth if you lost all your money.” When I look at my wife and children I feel like I’m the wealthiest man on earth. And if love is a measure of real wealth, than I am rich indeed – and I will spend the rest of my life sharing it in word and deed.
Yesterday I was with the people I love, honoring a little boy I love.
My in-laws and extended family met at the cemetery to honor and remember little Mitch. I was glad to see everyone – and it was nice to see them go out of their way to show they cared – but my heart was tender. I think it will always be tender for as long as I live. It always seems that tears are just a thought away. I guess that’s part of grief and I’m learning to accept it.
We gathered around Mitchell’s headstone and my father-in-law passed around a bag of salt & vinegar chips (Mitchell’s favorite). To each was given a chip and then shared something they remembered about our son. We all laughed and cried as we reminisced about this neat little boy that had found his way into everyone’s heart. I quietly put my sunglasses on to hide my eyes that had become red and filled with tears. I didn't want anyone to stop sharing for fear they were upsetting me. I wanted to hear what people remembered.
My sweet wife smiled and was gracious to everyone, but I could see beneath her smile a broken heart that missed her baby boy. My heart broke for her, too. But we kept our chins up and we remembered the sweet times.
At some point two of Mitchell’s aunts, Sonya and Mindy, reminded me of our last Thanksgiving with Mitch. We had all gathered at the grandparents’ home and sat around their living room, each sharing what we were thankful for. When it was Mitchell’s turn he said in his quiet and humble voice, “I’m thankful for life.” The moment they reminded me what my son said, everything came back to me and I remembered it, too … and my heart fell to the grass.
I think somewhere deep down Mitch knew his life would be shorter than most. Actually, I know Mitch knew it, but he didn't realize what he knew. Perhaps that is why he valued life so much. If my son valued life, I will value it, too.
I wish I could have learned some of life’s lessons a different way … I wish my broken son didn't have to teach me what it means to be whole. Although I miss my son, I have so much to be thankful for and I will not waste another moment of my life. I will live for my family. I will live for my son.
Last October, just after I wrote the essay NIGHTFALL I sat at my computer and began to chart some of the more significant tender mercies we have received along Mitchell’s Journey. As I began to read my journals, meditate, and prayerfully reflect on my life my eyes were opened and I began to see like never before. What’s more, realized Mitchell’s Journey started long before he was even born. In fact, 30 years prior to his birth things were put in motion that would directly prepare me for this hardship.
Were you to download this image and zoom in you would more easily see the constellations of tender mercies. The lines between the stars are purposeful and illustrate the interrelationship between them and it is largely chronological, from left to right. The color of the stars is also purposeful and has special meaning.
I have removed the labels for each star and will not share the details of these tender mercies because they are sacred and for me alone to know. I can say that each one of these events is absolutely real. It was only upon stepping back, allowing my spiritual eyes to adjust and to see the larger picture that I began to discern the majesty of God and all that He has done for my son and family.
I have now printed this chart on a large glossy plot and it now hangs in my home office as a reminder that if God was in the details of my life then, He is surely in the details of my life today.
So where to go from here? I don’t know. All I know is the sun will rise tomorrow, my son will still be gone and my heart will still be heavy with grief. I also know, no matter how dark, difficult and lonely this journey may have felt at times, I have never been alone.
I used to stand at the edge of an abyss with its mouth yawned, inching to devour my son. I now sit on the shore of a vast ocean peering into its infinite horizon. It is night, clouds lay low and are sparsely scattered and the heavens are clear to see. There is no storm in my heart this day and I can feel a gentle breeze, as if a whisper that all is well. As I look upward I can see these heavenly constellations that tell me I have never been alone. I must cross the waters now – and that is a journey, too.
Over the last few weeks I have felt a certain peace come into my life. It is unlike anything I've ever felt. Surely there have been tears and moments of profound sorrow, but there is an ebbing tide of light that is washing over me and filling my soul. I don’t entirely understand it, but I am grateful just the same … for that is another tender mercy, an evidence of God’s love.
With each day I am learning to adjust to life without my son. It isn't easy – but it is happening. I also have a lovely wife and 3 remaining children who will continue to receive the same love I have always offered them, and Mitch. That is not lost on me and I find great joy in them every single day.
There will be difficult days ahead, no doubt, and I will write of them. But I will also write of our happy times and discoveries we made along Mitchell’s Journey – way back when to now.
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 - causing his chest to protrude. He looked deformed. It was disturbing to see. The candle of life was dim and flickering by the winds of change. 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. 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 fought valiantly to live; who always wanted to make us happy to know that we loved him and that all would be well. No sooner had I drifted back to sleep that Natalie 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.
My sweet wife sat by her little boy, sometimes draping over him as if to comfort him, holding his lifeless hand. She stayed there and wept for a few hours. She never left him - and deep inside she wished he had never left her. The look of anguish on my tender wife's face broke my heart. Baby Marlie curled around Mitchell's head earlier that evening as if to comfort him and never left his side. Mitch loved his puppy and always found her a source of comfort.
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.