I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.
On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.
Neither of us knew he had 48 hours left.
Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.
I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.
Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission.
Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down.
Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out.
You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.
At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.
Just before a painful procedure, Mitch grabbed my arm and squeezed my hand as if to hug me. Although I was trying to love and comfort my dying son, he seemed to find greater comfort loving me. I loved how he loved.
“Looking back, I have not had the life I wanted … but it has been everything I’ve needed. ”
It was a strange thing to watch the hospice nurse keep our son healthy, just long enough to die. She did a marvelous job managing our son’s pain, guiding my broken wife and me through the process of death and dying, and offering insights on how to cope with grief. She warned us that everything we were experiencing at the time was the easy stuff – and that much harder, darker days were ahead. She was right.
As Mitch and I were hugging hands, it took every ounce of strength to hold back my tears – for I wanted to bury my head in the couch and weep like a child. I thought to myself, “This is not the life I wanted. How can I possibly save him?” My bright dreams of becoming a father had turned into a nightmare of the blackest velvet pitch.
My son would soon die and I would experience a grief so great, there are simply no words to describe it. Then, my professional world turned upside down. Good people, who might have been mentors, turned dark and twisted. Life went from bad to worse. When I thought things couldn’t get worse, life became darker still. Grief would soon take a toll on my surviving children – which as a parent was heartbreaking. I don’t write about their grief journey because I respect their privacy. But I will say that sibling grief is real and my wife and I do all that we can to help our children the best we can.
Looking back, I have not had the life I wanted … but it has been everything I’ve needed. I didn’t want to lose little Mitch – but his life and death have changed me for the better. I am not mad at God. But I am sad … and that’s okay. I don’t allow other life challenges, disappointments, and failures to make me bitter – I’m trying to figure out how they can help make me a little better. I have a long, long way to go. I am still learning to live with disappointment and grief -- but I am also learning to live in harmony and peace.
I know when I die, I will go to that place beyond the hills and see my boy again. And if there are no tears in heaven, I will be the first to make them – and the stars will bathe in them. Perhaps we will hold hands like this again – where I try to comfort Mitch and he comforts me. I have a feeling that we’ll look back on our lives and say “Well, it wasn’t the life we wanted but it taught us everything we needed.”
When I see life through that lens, I understand things differently, indeed. For we are souls eternal; gathering light and knowledge, even to infinity.
“Sometimes those on the outside of grief wonder what takes so long for those who suffer from moving on. It’s as if because they cannot see a visible scar or site of amputation, there is no injury; which only seems to make the scars of loss more tender and grief more isolating.”
It had been exactly one month since my son had passed away. The cemetery grass bore a burial scar, reminding us of the hell we were living. As if the wind-toppled flowers and weathered stuffed animal didn’t remind me, the grass did, and it pained me deeply.
Every time I visited the cemetery, there was a quiet desperation in my heart. I wanted to dig up the grass with my bare hands as fast as my feeble arms and trembling hands could so that I might rescue my son from the dark. I could still feel the warmth of his cuddles in my arms and on my chest. Mitchell’s soft voice echoed in my mind and my heart broke over, and over, and over again.
Sometimes those on the outside of grief wonder what takes so long for those who suffer from moving on. It’s as if because they cannot see a visible scar or site of amputation, there is no injury; which only seems to make the scars of loss more tender and grief more isolating.
I had knee surgery about 25 years ago, repairing my ACL. After all these years, my knee bears the scars of that operation and my nerves are permanently damaged. That was just my knee. In my younger years, I sustained injuries and wondered if I would scar and how long they would last. Most of them faded away over time. But, like my knee, some scars last a lifetime. If our bodies carry scars, what of our souls? My knee doesn’t make me human – but my love and emotions do. Losing Mitch scarred me in a place you cannot see with your eyes. But that scar exists, and it is very real. And like my nerves, there is also damage.
“Grief is inevitable and it forms scars that are deep. Scars that last. As it matures, it transforms from an obstacle into a path. ”
In my book, I write a great deal about grief rituals, but for now I’ll just say that I visited Mitch every single day for almost two years. At first, I was traumatized and psychologically I think I visited the cemetery to comfort him, even though I knew he wasn’t there. In time, I began to see that I was going there to sort things out and that I was seeking comfort myself. I no longer visit the cemetery every single day. But I do visit often.
At least to me, grief seems to mirror the cycle of life. The death of our loved ones doesn’t mean our grief dies with them. Much to the contrary, when our children die, grief is just being born … and that grief will live with us until the day we die. However, like humans, grief grows up and matures over time.
When grief is first born, it is much like that of a newborn: we cry. A lot. We don’t have the capacity for words – only tears. Then, we become toddlers with grief … learning to walk and find our balance in life. Some learn to walk quickly, for others, it takes time. We try to use our words and sometimes they don’t come out right – but we’re growing and learning how to come alive again. Like our human experience, grief grows from child-like stages to adolescence and then into adulthood. During those adolescent stages of grief, some behaviors might seem juvenile, and people may do things that harm themselves or their relationships with others. Not everybody does … but I have seen some that do. Eventually, grief matures and reaches seasoned adulthood, where there is balance, reason, and understanding.
I have discovered that as long as I live, grief will never die. The death of my son was the birth of my grief and I will have to care for it as though it were a person. In fact, grief is a person. Grief is me. So, I must tend to it and take good care of it and cultivate growth. I am both the parent and the child. Like raising a child, if I’m not disciplined, grief can spoil and become rotten and ruin me.
When I visit the cemetery, I no longer want to scoop up the earth with my hands and rescue my boy. I mean, I do … but I don’t have that desperate feeling anymore. There is still a tender part of me that always wants to wake him gently from his sleep and say, “Little Mitch, it is time to wake. Let me lay here for you. Let me take your place.”
I think I understand and have learned to accept what has happened. That doesn’t mean I don’t hurt. I hurt a great deal. However, I have come to a place of balance, reason, and understanding. But there is still damage on the inside and a scar you cannot see with your eyes.
Grief is inevitable and it forms scars that are deep. Scars that last. As it matures, it transforms from an obstacle into a path.
I have discovered that as long as I live, grief will never die. The death of my son was the birth of my grief and I will have to care for it as though it were a person. In fact, grief is a person. Grief is me. So, I must tend to it and take good care of it and cultivate growth. I am both the parent and the child. Like raising a child, if I’m not disciplined, grief can spoil and become rotten and ruin me.
When I visit the cemetery, I no longer want to scoop up the earth with my hands and rescue my boy. I mean, I do … but I don’t have that desperate feeling anymore. There is still a tender part of me that always wants to wake him gently from his sleep and say, “Little Mitch, it is time to wake. Let me lay here for you. Let me take your place.”
I think I understand and have learned to accept what has happened. That doesn’t mean I don’t hurt. I hurt a great deal. However, I have come to a place of balance, reason, and understanding. But there is still damage on the inside and a scar you cannot see with your eyes.
Grief is inevitable and it forms scars that are deep. Scars that last. As it matures, it transforms from an obstacle into a path.
“And in the pitch of night, as I looked heavenward I saw a heavenly sight … forever, it seemed, I could see tender mercy upon tender mercy. In that dim light, I learned to see far beyond the veil of mortality.”
It was a punishingly hot summer day. Evening was almost upon us when we stopped by our home which was under construction. We sold our previous home because it had too many stairs and we wanted to have something that would accommodate Mitchell’s growing physical needs.
When we arrived, our kids bounced out of our van and ran around the home to see what had changed. They were freshly bathed and smelled vaguely of soap and shampoo and were dressed in their jammies in preparation for a den party back at our apartment. Mitch and Ethan ran into what would soon be their room. Like little children do, they began making plans about where their beds would go, the forts they would make and where they would store their favorite toys. The little boy in me wanted to join them in their youthful adventures – but this was their time, and I loved watching a little of me in them.
Mitch, wearing his cute yellow t-shirt, ran to the corner of their room and said, “Effie, this is where we’ll sleep!” Ethan smiled, “Sweet, dude” and began to share his excitement about their brotherly plans.
It never occurred to me the hell I would experience in this very corner just a few years later. This spot where you see Mitch standing is exactly where he would die.
This was the same place I fell to my knees a thousand times and pleaded heavenward for my son’s deliverance from death. This is where I bartered with my Father and asked that He might take my life instead. The same place my wife bowed her head, broken and defeated in grief when Mitch would awaken long enough to tell his mom he would be okay. This is the exact same place, to the very inch, she would sense his soul linger after he passed away … where she heard a whisper to her soul, “It’s okay, Mommy.”
In this unremarkable corner of suburban America, this infinitely tiny speck the universe is hallowed ground. This is where I peered into the abyss, which is death, and found myself gasping for air as I was swallowed up in the darkness of grief. Yet, as my spiritual eyes began to adjust … as my soul began to search heavenward, I started to discern the many tender mercies heaven put in our path so we might bear our burdens more easily. The recognition of these invisible blessings were like little flecks of light – and the accumulation of these blessings presented themselves like a heavenly constellation so I could find my way in the pitch of night. Oh, what night grief can be. So dark … so heavy, one cannot see or scarcely breathe.
Yet, there, in this corner where I wished to die so that I might escape the grief of losing my child, I was given eyes to see Heaven’s tender hand and many loving mercies. Even still, I was required to walk the dark path of grief and was greatly pained therewith; for I wanted my son to be with me.
This insignificant space, this speck in the universe … this is where I knelt with bruised knees: a plain, ordinary, and flawed man, begging for relief. And in the pitch of night, as I looked heavenward I saw a heavenly sight … forever, it seemed, I could see tender mercy upon tender mercy. In that dim light, I learned to see far beyond the veil of mortality.