Why do hard things happen? I believe, in part, because out of the rubble of hardship rise giants. This woman, Jody Medor-Chevalier, is one such giant. I first became acquainted with her because she was following Mitchell’s Journey and had reached out in love and compassion. Over time we have become friends and I have been humbled by her enduring love and empathy.
When I first saw this photo a few months ago I was intrigued – but as I looked closer I found myself overcome with tears. On the top of her right shoulder was the name of my precious little boy, who I miss with all of my heart. This remarkable woman participated in Run for Our Sons, a fundraiser for Parent Project Muscular Dystrophy – the same group that reached out and tried to save our little Mitch.
On both of her arms were the names of children who have either fallen, like Mitch, or are falling. You see, that’s the difficulty with DMD; you have either fallen or are falling. There is no remission, no medical get-out-of-jail cards … there is only one end to this disease and there are absolutely no exceptions. Even with Ebola, however deadly it is, patients at least have a shot at survival. That is not the case with DMD, it is 100% fatal. Jody knows this and has decided to rise up like a giant in honor of my little son, boys like Trevor Nielsen, Aiden McDonnell and so many other young kids who deserve life.
Jody has a Facebook page www.facebook.com/jodyrunsforoursons wherein she lists the many young children stricken with this muscle wasting disease and cites them as her source of inspiration and love. She will be running a 50K race in September and we stand in support of her monumental efforts.
So, why are hard things allowed to happen? Because people like Jody happen and God knew it. Or Pat Furlong who lost two sons to DMD and decided to start PPMD – now a global leader in the fight against Duchenne Muscular Dystrophy. Then there are people like Brian Denger who lost his son around the same time we lost Mitch – and now spends much of his time and talents advocating and raising awareness. And there are so many more who have risen like giants. Just as heaven intended.
I am persuaded the road of life isn't paved with ease and air-conditioning on purpose. It isn't a simple, flat path with clear directions - nor was it ever meant to be. Instead, life is a journey riddled with great difficulty and struggle – because in our struggle and sorrows we are made stronger – and heaven knows that, too. And, if we travel well, we can learn to rise like giants and make a difference, no matter the path we tarry.
Thank you Jody, Pat, Brian and so many more who inspire me to rise above the rubble of hardship, to wipe away what seems an endless stream of tears and to press on.
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Photo credit:
www.facebook.com/pages/Exposed-Photography/67645276360
This afternoon Natalie and I went to Primary Children’s Medical Center to visit another young boy who also has DMD and is struggling with heart failure. I didn't take photos of this family out of respect to their privacy, though I was strongly tempted to document their story. What happened to our sweet Mitch is happening to many, many other young children – and we want only to help them the best we can.
As Natalie and I stood outside the CICU waiting for security to let us in, my tender wife clutched the small gift she brought this boy, closed her eyes and gathered herself – for we were about to enter a place very near to our broken hearts. Just past this door and around the bend was Mitchell’s room where a medical team fought to save our son. Behind this red door was the very place we learned our son had days to live and our lives and hearts would become forever broken.
As the doors opened it felt as if we walked back in time. Part of me anxiously peered into Mitchell’s CICU room in hopes of seeing him – instead, I saw a tender infant in the very room that was home to our little boy. As we greeted the family we were there to see, we spoke with this young man a while. He was listless and tired and struggling. Our hearts went out to this young boy who, like Mitch, only wants to live. Our hearts also went out to his parents who love their son so very much. As we said our goodbyes in the hall our hearts were heavy with sorrow and overflowing with love for them.
As we left the hospital I couldn't help but retrace in my mind our journey home with Mitch – when he left the hospital to die. That was his last trip home and the longest commute of our life.
We don’t shake our fists at God for taking our son … His son, home. Instead, we kneel and thank God we had little Mitch in the first place and that because of him our hearts are filled with more love than ever before.
I believe sorrow can be a teacher, turned gift, if we allow it. There is a divine purpose to suffering and struggle if we listen with our hearts. Yet listening with our hearts can be difficult, especially when they’re trembling in sorrow. But, once we quiet our minds and listen with our soul, we will see our sorrows aren't meant to hurt us – but instead our hearts shape and mold. Though we lost our son and weep in grief, we have learned a deeper kind of empathy than we know how to speak.
I don’t know the future of Mitchell’s Journey, or the journey of our family in the years to come. I only know we want to lift and love others – that is what our sorrows taught us.
In ways we never knew possible … we care
In my garage hang 5 shovels that were used, as a matter of ceremony, to bury my dear son. Every day I come home I see them. I can’t NOT see them. These shovels are now symbols of what matters most and the price my family paid to be reminded of such. When I see them, suddenly material things are worthless to me; the pursuit of fame and attention, ring hollow and lame; and all the tinsel and chatter of the world lose their luster and powers of persuasion.
I just see 5 sacred symbols, still bearing dirt from the burial site, and am reminded of one missing boy I would do anything to see and hold again.
I don’t keep these symbols visible to agitate already tender wounds nor do I use them to fixate on the pain of loss; the kitchen table with an empty chair does that well enough. Instead, these shovels keep me focused and clear-minded. They remind me of the realities of life and also point to my most treasured relationships. Each day I leave my garage remembering Mitch and I make a promise to do better than the day before – to make whatever time I have on this earth matter. When I return home I am reminded to talk a little softer, to listen more intently, and to love more visibly … for everything, and I mean everything ... is temporary.
I made this video just after Mitch passed away vimeo.com/61500841 wherein these shovels were shown.
These symbols keep me sober and sane. They remind me to never dig a pit for my neighbor or intentionally cause harm to others, but rather to take compassion and help dig others out of trouble and help where I can. They remind me that I, too, will one day be laid to rest and I will be held accountable for my choices … for the help or harm I caused others.
I hope to never hurt another but always help ... and if I'm lucky, to build a soul with heaven's help.
I’ll never forget this moment. A million years will pass, cities will fall and be swallowed up by the sea, and this moment in time will forever be with me.
The sun was just about to set, the temperature was absolutely perfect and my sweet wife wanted to take our kids to the park so they could enjoy the fresh air – free from the tyranny of frost and snow we had known prior winter months. Natalie, sensing Mitch needed some extra help, lovingly carried our son to the top of the jungle gym and went down a slide with him. She didn't know at the time Mitch had a fatal disease; she just sensed he was special and gave him extra love and care.
Little Mitch had the cutest voice and giggled as they slid down the slide. I loved seeing his tiny dimpled fingers grasp his mother’s hands. I could tell he felt comforted in Natalie’s arms. I remember getting a little emotional as I took this photo and thought to myself, “It doesn't get any better than this.” Though we were a young family and broke, sometimes wondering how we would pay for diapers, I was the richest man in Babylon.
It is unrehearsed moments like this, moments of spontaneous love and goodness, that make my heart swell with love and gratitude.
Just a few weeks after I took this photo we would learn Mitch had Duchenne Muscular Dystrophy and everything in our world would turn upside down. Grief and sorrow would become our tender tutor – and over many years, even to this day, we would need to learn how to make peace with hurt.
It wasn't long after this photo I would find myself many late nights weeping at our kitchen table reading what few books were written about our son’s muscle wasting disease. I was desperate to find a way to save my little baby because I loved him so. I also knew my sweet wife, a broken-hearted mommy, wanted to protect our son – and the “fix it” father in me was deeply troubled that I powerless to fix this.
Though I couldn't stop my son’s body from deteriorating, I knew I had power over some things. I understood I had power over my time and how I chose to invest it. I had power to be in the moment and show love to my family in both word and deed. I had the power to learn rather than languish. To become better, not bitter. I only wish I had power to not hurt so much. I still haven’t figured that out. Perhaps, because to hurt is to be human, I will just need to learn to live with this kind of hurt. As long as I love my son, I will hurt for him.
But, if there is one thing my son has taught me it is: we may not be able to control certain events in our lives, but we can control how we respond to those events and what meaning they have for us.
I am still sorting things out and trying to find meaning in all that is happening. I suppose that is why I write here, to sort out my sorrows and find meaning in suffering. It is so hard. Sometimes grief comes barging into my heart like a ruthless home invasion. It comes unannounced and I confront it unrehearsed and unprepared. One moment I’m fine and the next moment grief, my fierce goliath, tackles my heart to the ground and I find myself wrestling with intense feelings of panic … that somehow I can still save my son from harm. Then I am smothered with feelings that I failed my son and couldn't save him. Then deep sorrow that he is gone. I am learning to endure and manage those, and many other, awful moments of grief; but they are real and they take my breath from me and break my tender heart just a little more. I have come to learn healing hurts.
Yet, despite my sorrows, which are great, I think back on these unrehearsed moments of love and my heart heals a little, too. I think to myself, “I had that! A loving wife and a precious son; indeed, I’m the lucky one.”
Then suddenly, to my great relief, I hurt a little less and I feel a little peace.