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I remember this cold winter night when Natalie tucked our sweet boy in.  Mitch loved to be tucked away before he slept and the closer his tender little life came to the edge of the abyss, he seemed to want that comfort more and more.  I believe part of him, sensing time was short, was afraid of the night – for what if he didn’t wake?  Mitch didn’t want to die; in fact, he very much wanted to live.  Though his muscles were getting weaker and he was able to do less and less, he wanted to hang on to whatever life he could.  As I mentioned in an earlier post, he wasn’t a glass half empty/full person … he was just glad there was something in it.  For Mitch, even the smallest drop in his cup was cause for gratitude.  Oh that I could be a shadow of him.

“The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped. That is how we hold our broken pieces together. ”

— Christopher M. Jones | Mitchell's Journey

After talking for a while, Natalie reached over to Mitch and they gave each other a warm embrace.  My heart swelled as I saw these two remarkable souls hold each other as if to say to each other, “I’ll hold your broken pieces.”  Natalie fought valiantly to keep Mitchell’s broken body together while his sweet soul seemed to hold her broken heart and keep it as one. 

There was never a night that little Mitch didn’t get this same hug from his mother.  She was his greatest comfort in life and he loved her so.  Though I tried to be there for my son in every way I knew how, there is simply no equal for a mother’s love.

This photo was taken January 12th, just a few days after we learned his heart was collapsing and that therapies were not working.  He was denied a heart transplant because he had a fatal disease and all we had left was precious time.  We didn’t know how much time – we just knew the end was coming.  Natalie and I cried every night under what felt like an ever blackening sky – for hope had faded like the evening sun.  In the darkness, fear of losing him loomed heavy like a thick fog and we didn’t know where to go or what to do.  We just knelt and prayed for help.

Two weeks later Mitch would be admitted to the ER for end-stage heart failure … and though we already felt broken, we were about to be broken further than we could imagine as we watched our boy slowly die.  Then came grief, which broke our brokenness even more.

My greatest heartache in life was then, and remains today, knowing that we couldn’t save him.  That is a grief of another sort … a grief added to his death.  A grief twice.

Since Mitchell’s passing, Natalie and I have learned how to hold each other’s broken pieces together.  It isn’t always easy, especially when we feel like we’re falling apart ourselves – but we find a way to set aside our sorrows and be there for each other … and that is what makes the difference.  The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped.  That is how we hold our broken pieces together.  Mitch was scared, yet he tried to comfort his mom anyway.  In return, he received great spiritual comfort.

I know that Mitch and my Father are holding some of my broken pieces together, pieces unknown to me.  I can sense heaven’s hand in my life – and for that I am grateful.  Though I carry great grief, I also carry gratitude for feelings of peace. 

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I stopped by to visit little Mitch today after work. I was so grateful to have these beautiful arrangements from @robinojones adorn my little boys place of rest. They were so thoughtfully arranged in memory of Mitch and perfectly reflect the tenderness of his heart and the things he treasured.

Mitch loved Christmas with all of his heart, not just because he got presents (what child wouldn't be excited about that?) ... he loved Christmas more because of the spirit of giving and the meaning behind the holiday.

As I sat on the bench and thought about my son, I was reminded of the things that matter most in life. I cried a little and then, unexpectedly, I cried a lot. I felt a strange potpourri of grief and gratitude coursing through my veins.

I believe my heart has healed a great deal since I lost him, but I will always hurt because he's gone. I will always grieve. This is a burden of sorrow I'll carry until the day I die. Sometimes it hurts a little, other times it hurts a lot.

Today grief washed over me like a tidal wave ... yet I knew I wasn't drowning. I was just learning how to swim in a place of never-ending tides, unexpected undertows and a landscape of fluid emotions. I was okay, but not okay ... and that was okay. That's part of being human.

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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.

 

This morning, as I left for work, I couldn't help but notice the sunrise and think how much Mitch would have loved it.

“Mitch has taught me something about the duality of grief; though I may suffer chronic grief, my heart can still be filled with gratitude.”

— Christopher M. Jones | Mitchell's Journey

Because little Mitch is never far from my mind, when I saw this display of light and color, my heart swelled with gratitude and I thought to myself, "Oh Mitch, that sunrise is for you." In a way, I felt like I had Mitch beside me - even though he was not. Not the way I want him to be. That, my friends, is grief. It is to feel great pain, despite our spiritual beliefs. A longing for what was lost and aching for relief.

Mitch has taught me something about the duality of grief; though I may suffer chronic grief, my heart can still be filled with gratitude. I can be afraid and still have courage.

I think that's how I've learned to survive grief ... I acknowledge my sorrow, but then I look for reasons to be grateful. I can smile through the tears.