I’ve heard it said, “Sometimes memories sneak out of my eyes and roll down my cheeks.” This is a memory did just that.

It was cold outside, but my heart couldn’t have been warmer at this moment. We took our kids on an adventure to play in the freshly fallen snow. As the kids were putting on their snow clothes, Ethan pointed to his Spiderman hat and said, “Hey Mitch, look at my hat!” Mitch smiled and said, “Dat’s cool. Look at mine; it’s mommies. Its soft and will keep me warm.” Were he given a choice to wear any hat on earth or his mom’s hat, he would have chosen his mother’s every time. To Mitch, wearing her hat was like getting a constant hug from her.

“How lucky I am to have something that makes saying goodbye so hard.”

— Winnie the Pooh

With that, our kids ran outside to prance about in fluffy fields of white. Mitch reached down to gather snow in his tiny hands and threw it up in the air. He laughed as a chunk of snow landed on his brother’s head. Ethan giggled, then reached over to kiss his brother on his cheek.

By this time, the warm tears streaming down my face were turning to ice on my chin. If I could have frozen time like molecules of water in ice and forever live in this moment, I would have. I suppose, in a way, this photo did just that. I am forever grateful for tender memories – however much they might evoke feelings of loss and sorrow.

I think Winnie the Pooh said it best, “How lucky I am to have something that makes saying goodbye so hard.”

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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.

 

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Little Mitch was less than 24 hours from being admitted to the ER. We would then learn he only had days left to live. After a rigorous battle in the cardiac intensive care unit, we took Mitch home to live out the remainder of his days where he was comfortable and surrounded by everything and everyone he loved. No time in my life has been more sacred than that time with my son. We were blessed to have him 3 short weeks … which were also the longest weeks of my life. My knees are still bruised.

I’ll never forget how little Mitch leaned into his mother’s embrace in search of comfort. As his parents, we were desperate to rescue him. He was in a great deal of pain as organs in his body reacted violently to his failing heart. It is a tender, terrible irony that a little boy who had such a loving heart would die from heart failure. Natalie held our boy in her arms, also in search of comfort. But there was none to take.

Over the next few weeks we would watch our once vibrant son wither away. I wanted to have that one last conversation with Mitch. I wanted to tell him for the last time how much I loved him and how proud of I was of him. I did tell him such things while he was home … but I wanted just one more. I wanted to tell him that when I grow up, I want to be just like him. I still do.

In 2012, the Thanksgiving prior to Mitchell’s passing we were at my in-laws at a family function. Everyone took a turn to share the one thing they were grateful for. Most parents shared their gratitude for their family and for God. Children shared their gratitude for toys, family and friends. When it came time for Mitch, he simply said, “I’m just thankful to be alive.” I recorded him saying that with my iPhone. I remember that it took a maximum effort to not burst into tears at that very moment.

Another bitter irony that a child who intrinsically valued life would have it taken from him so young.

Comfort and spiritual assurance came and went like a heavenly tide under the dim light of tender mercies. After my son passed away the sky, which was already pitch as night, drew darker still. There were times I sought after heavenly answers and peace … and I received nothing. It would take repeated efforts to reach heavenward before certain answers came. Looking back, I can see that my struggle to find answers and peace [peace, where there was none to take] … that very struggle taught me things I needed to know. I discovered things I would have never learned had answers and peace come at my beck and call, as though God were some kind of cosmic butler. He is no such thing. But He is a parent and a master teacher who understands nothing of value comes easily. Sometimes the answers we seek are discovered in the struggle itself. 

I often hear or read statements like “choose happiness” as though it were possible to blithely lay down our troubles like heavy, unnecessary luggage and simply move on. No sentiment could be more naive or insensitive to those who are trying to find their way through the wilderness of grief and trouble.

How are we to find peace where there seems none to take? It isn't choosing happiness, first.

At least for me, I have discovered that when I first seek meaning and purpose, happiness eventually follows. More than happiness, actually; I experience deep joy and a calming sense of understanding. Yet, when I seek happiness first, I forever hunger for that which cannot satisfy. 

Little Mitch taught me to first seek meaning and purpose, then peace will follow. Understanding will fill those places that seem so empty and hollow.

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My dear wife and I had just delivered the most difficult public address of our lives. It had never occurred to us that parents don’t typically speak at their child’s funeral because emotions are so very near the surface. For some reason, we did.

After the funeral service we made the somber journey to the cemetery. My little son was in the hearse in front of us and all I could think was, “He must be so cold and scared and lonely.” I had those same nearly schizophrenic feelings when I was 19 years old and drove my father’s casket alone in the back of a pickup truck from Edmonton to southern Alberta. It was snowing outside and I agonized that my dad was cold and I wanted to protect him like he so often tried to protect me. I cried a lot on that long drive – I was young, sad and very much afraid. Although those feelings of wanting to protect my father were strong then, they were so much more intense toward my son. What you see here was the worst commute of my life.

As we followed our little boy I couldn't help but also think back on my life with Mitch. Instantly I had feelings of guilt and grief and a longing to hold him such that I had never before known. I cried on this drive, too – and my soul cried out even harder.

I couldn't imagine it then, but I see it now: death and dying, the funeral and all its preparations, as difficult as they are … that’s the easy part. It is in the quiet of things, long after death has come to steal away that which is most precious … it is when the dust settles and the world spins madly on … that is when the struggle truly begins.

I have heard many who wrestle with grief share feelings of personal guilt over a million-and-one things they wish done differently. I understand those feelings because I have felt them, too. I wrote in a post last December, “That list of “what ifs”, however counterfeit and scattered with lies, remains glossy, persuasive and deceptively wise.”

Though I may be tempted to feel guilt for what might have been, or perhaps even should have been, I know I always had the welfare of my family at heart and I did the very best I knew how. I wasn't perfect, but I was perfect at trying – and that is good enough for me. Grief is hard enough – guilt makes grief more difficult. Guilt is a lot like fire: if it is properly managed it can wield great power and affect change. If mismanaged, or gets out of control, it can burn us and cause deep scars. 

Yet there are so many moments that invite feelings of guilt: from the foolish things people say, to those who suggest we’re grieving wrong … because we’re not doing it their way. To all of that nonsense I say, ignore it. It is easy to critique the grief of others for those who never knew it or bore it.

I don’t feel guilty for having good days or moments of happiness – as though I've betrayed some unspoken rule of grief. To the contrary, I seek after such moments daily. We are made to find joy – and joy is what I seek.

On the other side of the grief spectrum there are some who suggest, “Mitch wouldn't want you to be sad.” Yet, I am sad that he is gone. I don’t feel guilty for grieving or feeling deep sorrow over the loss of my son … for I believe he understands my grief … that grief is the language of the heart and points to unspeakable love and unimaginable loss. Why feel guilty for that? I don’t feel guilt for grieving and I never will.

Mixed in the many layers of grief are the questions “Why me? Why this? Why?” We may never know the answers … at least in this life. But, I can’t help but think there’s a relationship between grief and grace. At least to me, it seems if we endure our struggles well, grief can become our teacher and open our hearts to a deeper compassion toward others. 

Though I wish the death of my son never happened, it did. Shaking my fist at God in anger won’t change that … in fact, that kind of anger would change me … and I don’t want that.

I’ll never turn my fist toward God. Instead, I turn my ear toward Him and do my best to listen. And, when I slow down and give my heart some space, I am convinced grief is a key to grace.