“Hey little Mitch,” I said with a soft voice, pointing to the inside of a book. “Will you put your arm here so I can trace it?” Mitch looked at me with a soft but curious expression, “Okay, Daddy.” Mitch flopped his tiny arm on the book and said, “Huwwy, Dad. I have to play wiff fwends.”
Fighting back my tears, I carefully traced his little arm and even smaller hand. Anxious to go outside and play in the summer sun, Mitch didn’t know this book told a terrible tale about what he would one day experience. He only knew his mommy and daddy loved him and that they would always keep him safe. Mitch, like many young children, worried about monsters hiding in closets or under beds. I worried about the monster hiding inside his body. A monster so frightful and mean, all the science and medicine on earth could not stop it.
When I was done tracing his chubby little hand I kissed Mitch and said, “Daddy loves you.” With that, my little boy dashed away without a care in the world. Inside, I felt like I had the weight of the world on my shoulders.
For nights-on-end, I sat weeping at my kitchen table as I read this book … a book which, at once, read like a medical text and a horror novel. Though slightly dated, this was the only content I could find at the time that was unflinching in its description of DMD and offered candid advice on how to cope with the harsh realities of muscle wasting. I cried, and I cried. And when I felt pulverized by sorrow, convinced there were no more tears, grief found deeper reservoirs of the soul, and I cried some more.
It wasn’t until my son died less than eight years later that I discovered there is no end to tears. For if there is no end to love, there is no end to grief. At least while I’m mortal.
I believe one day grief will change. Not today. Not in 50 years. As long as I’m mortal, I will grieve over the loss of this little boy I love so much. Grief is a heavy burden of the soul. With each day I carry the weight of grief, I feel myself getting stronger. With each fallen tear, I am learning a deeper compassion for others who hurt. With every heartfelt prayer for relief and understanding, I draw closer to my Father. I know He is there, and I know He cares. I believe He wants us to be strong as well as good – and that is partly why we suffer. I am not strong, and I don’t think I’m very good … but I’m trying. I will never stop trying.
I found this book the other day as I was preparing for a Mitchell’s Journey presentation at a medical school. I had long forgotten I traced Mitchell’s tender hand so many years ago. When I opened the book my heart fell to the floor. I cried that moment like I cried way back then. Only my tears were from loss, not the anticipation of it.
This little hand is evidence my son lived. Though he is gone now, the memory of Mitch lives in my soul, and I cannot get him out of my mind. I am grateful that his memory isn’t a source of agony anymore – but instead a source of deep love and joy, and yes, still pain. Because of Mitch, I have gained a deeper appreciation for life, family, and love. I have learned what it means to be a father and a son. Though imperfect and flawed, each day I try to be a better one.
Last week, on the 3rd anniversary of our son's passing (the very day, in fact) we received a package at our door. With trembling hands, we opened it only to discover a cross stitch of our son patterned after one of our very favorite images of Mitch. Meticulously woven by different colored threads, it looked like a photograph.
A compassionate follower-turned-friend gave this to us as a labor of love and a token of her affection. I remember first becoming aware of her when I saw her post photos of her family wearing#milesformitchell t-shirts as they participated in our virtual runs. They would make hand-drawn posters and gather as a family to take pictures, expressing their love and support. I was so humbled by her love made visible.
So, when Natalie and I had the pleasure of finally meeting Vanessa Bryson and her son in South Carolina when we gave a keynote at a conference a few weeks ago, I felt like I was seeing a long-lost family member. She was just as loving and kind in person and she seemed online.
A day prior to this package arriving we received a smaller package that contained a loving hand-written note, a few first place ribbons she won at a competition along with the proceeds of her winnings to be used for flowers at Mitchell's headstone. My wife and I wept over her incredible gesture of love.
This beautiful work of art ... this love made visible ... will hang in our home as both a reminder of our son whom we miss so much and the amazing people that live on this planet; people who care enough to reach out and love complete strangers. Thank you Vanessa, for your love and friendship and for being such a tender part of our healing journey.
“The trouble with time is we always seem to think we’ll have enough of it.”
The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son.
The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.
Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band aids, scraped knees and children’s books. But that was not our lot in life.
I’ll never forget our first encounter with our hospice nurse. She was so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition to death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare my son.”
After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to truly grow.
Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow.
So there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears wondering how I could have been a better husband and father. I made plenty of mistakes and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes and I always made things right with my kids. Instead I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.
The trouble with time is we always seem to think we’ll have enough of it. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much.
Our skin burned as if from a roaring campfire. The summer sun was about to fall behind the Oquirrh Mountains and offer some relief from the heat. Little Mitch scurried about on his plastic big wheel, wearing his favorite Hulk Smash t-shirt. I loved how he lifted his legs as he rolled down the modest incline of our driveway and giggled and giggled. I smiled then and I smile again today. A small Band-Aid on his foot offered evidence he was doing just what little children should do: explore. There was a thin storm cloud above us that created almost magical mist all around us; drops of water that looked like diamonds falling from the heavens.
I look back on these nearly perfect moments in time with gratitude. Life wasn’t perfect back then. I worried a great deal about work, bills, and what I wanted to be when I grew up. I was a young father often humbled by the sacred responsibility of raising children. “Who am I to do such an important thing?” I would ask myself. I felt woefully inadequate as a father, but my love for my wife and children gave me the courage to carry on.
No matter where I am in life, it seems, I have to find the courage to carry on.
I have been asked to speak at a funeral director conference in two weeks on the east coast. There I will share Mitchell’s Journey and a candid insight on our experience with a funeral home.
Yesterday, as I began preparing my keynote for the conference, I began to reflect back on that time at the funeral home. I went through a corner of photos I hadn't ever really looked at. I took the photos, but I quickly put them away because my heart was much too tender. But now I had to look at them. I had to pull the relevant parts of the story so that I could share with these funeral directors our unfiltered experience. I thought I was ready. I wasn’t. I wept and wept. I wept so hard I almost threw up 3 times.
Don’t worry, I’m okay. But I’m not okay. And that’s okay.
Some who lack empathy, or perhaps just lack insight, ask “Why do you do this to yourself?” To them I answer, “I am not doing this for me, I’m doing this for others, so they might understand and see.” Whether I’m speaking to the medical community, bereavement groups, businesses, religious institutions or youth groups … and now funeral homes … I share Mitchell’s Journey so others know what happens on the other side of medicine … what happens when we take our children home from the hospital to die, and how we die on the inside, yet must learn to live afterwards. I share this so others standing on the outside of grief might have a glimpse of what a sufferer might be feeling or thinking. I share so that others who are walking in darkness might find a measure of light, if only just to light the path just beneath their feet.
Even though I didn’t really want to go there yesterday, I had to, so that I might better serve that audience with information that will help them help others. At least for me, helping others makes the hurt worth it. I am going to hurt anyway, so I may as well use it to help. As I said in a recent keynote to a bereavement community, “Grief is like a flame that cannot be extinguished. As long as I love, there will be fire. What the flame means to me … what it does to me or for me is found in how I carry it. The flame of grief can either burn me or help me see.”
I don’t know that I will have anything special to say; I’m just an ordinary dad who lost his son and is learning to live with chronic grief. I just happened to capture every detail of our funeral experience. I hope whatever I share helps a little. I hope.
Which brings me back to this picture: my son was a beautiful soul who left my world profoundly empty, yet strangely full.