A few years had passed since Mitchell’s diagnosis. We were committed to living a normal life as long as possible; we knew that all-too-soon DMD would take normal away from us and we weren't going to let the disease rob us of today … for tomorrow would come all too quickly. We knew that we would never have now again.
It was a hot summer day when we drove to a fire station and introduced Mitch to the men who worked there. We explained to the firefighters our son had DMD and suddenly these strong men, who were wrapped in muscle and deep tans instantly had a look of compassion on their faces. They went from men of brawn and bravery to fathers who loved and cared. They invited us in and were so kind to our son and family. We told Mitch that not only did these brave men save people and property from fires, they were also trying to save him [and many children like him] from Muscular Dystrophy. I told little Mitch these men are the ones we see with boots in-hand at intersections to collect donations. I remember getting a little emotional as I described what these firemen did to help my sweet boy. Mitch smiled quietly as I kissed his cheek. I miss kissing his cheek.
It didn't take long for these good men to put a little firefighter jacket and helmet on Mitch. The posture of my son’s little hands told me a silent story about how he was feeling at the moment. I could tell he felt timid and awkward receiving so much attention, yet his face told me he felt special. If only he knew how special he was to his mother and me – but alas, a child can never understand the depth of a parent’s love until they become one. Even then, they only comprehend the love they then have for their little ones.
Before long these kind firemen lifted Mitch into one of their fire trucks and described how everything worked. Little Mitch was fascinated.
As we drove home that day Mitch looked out the window with a smile on his face as though he were lucky to have had that experience. I kept looking back at him through the rear-view mirror and couldn't help but think how lucky I was to be his dad. I could tell that experience made him feel special – and that made my heart swell. I believe everyone deserves to feel good about themselves. Everyone.
I couldn't help but feel gratitude for my wife who always looks for ways to expand our children’s horizons and encourages them to experience new things. If it weren't for her diligence as a parent, this experience may have never happened.
There isn't a day that passes that I don’t borrow Mitchell’s words and say to myself, “I’m the lucky one.” Though my legs are weak under the crushing weight of grief, I find myself with treasures of the soul, so-to-speak. When I think of my sweet son and my attempts to rescue him – I can’t help but recognize how he has rescued me. I’m the lucky one.
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.