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.
Natalie sitting by Wyatt (don't let this image confuse you, he wasn't sad, he was just in between expressions). Wyatt had fun watching a competitive athlete fight on behalf of his fallen brother. Marco has been so kind to Wyatt and always gives him advice.