WHAT EVER YOU DO, DO IT WITH LOVE
Sometimes, when I’m listening, I think Mitch still beckons me to see the things my mortal eyes are blind to, yet my spirit seeks eagerly.
— Christopher M. Jones | Mitchell's Journey

When Mitch was a tiny boy he’d softly say in a childlike tone, “Dad, come wiff me, I show you sumping.” With that, his chubby little hand would grab my fingers and gently tug me toward something he discovered. He was never overbearing but with great love in his heart would gently lead me along. Until his dying day, that softness never left my son – though he probably could have found any number of reasons to be angry with his lot in life. He was kind and pure and overflowing with a faith I scarcely comprehend. I think when my mortal eyes fall away and I see my son for who he truly is, I will see that he was my older brother and that he was here to teach me.

I was always fascinated by the things he found interesting; the way an ice cube melted on the kitchen table, or how bees would land on a flower and not fall off the petal, or the sheer magnificence of a sunset that captured his heart. Little Mitch was easily entreated and marveled at the little things in life. To Mitch his cup was always overflowing and he stopped at nothing to drink it all in.

On this spring day, while taking a walk as a family, my sweet little boy offered that familiar invitation “Dad, come wiff me, I show you sumping.” With a little tuft of grass in his hand he led me to a corner behind a tall tree and said in his tiny voice, struggling to pronounce the letter “L”, “Dad, wets make a fort.” I don’t remember the other things he said … I only remember getting choked up by his tenderness. I wrote in my journal that night, “How great are these little ones. Indeed, of such is the kingdom of heaven.”

When I look at this tender photo of my son I am reminded it isn't what we do together as families that matters as much as how we do it. My most treasured memories with my family aren't the big trips to Disneyland or other attractions, which things were always significant financial investments. Instead, the memories I treasure the most were the emotional investments in my children … it was the tiny adventures just down the street from where we lived; it was the cuddles on the couch, the heart-felt talks about whatever was on their mind, or the wandering conversations on the grass. Those memories are where my heart yearns to go – for they were woven with love. I would rather have one loving conversation with my children than a thousand trips to all the wonders of the world. In every way that matters, our children are the world’s greatest wonders.

Even in his later years, before he passed away, Mitch would often come to me and just as tenderly say, “Dad, come with me, I want to show you something.” I was always anxious to see the world through his eyes.

I can almost hear his whisper now, ever so softly in my mind. Only this time he see’s things that I cannot – for he has traveled down a path far from mortal view. So, I must listen closely now … I must listen with my heart and mind; for gems of the soul are, on purpose, not easy to find. 

Sometimes, when I’m listening, I think Mitch still beckons me to see the things my mortal eyes are blind to, yet my spirit seeks eagerly. 

I am so thankful for my little son who taught me one the most important lessons on earth and heaven above: whatever you do, do it with love.

I’M ON MY WAY, BUT I’M NOT THERE YET

I remember watching my sweet wife’s expression when she first laid eyes on Mitch in the delivery room. She immediately wept tears of joy and was overcome with a love that transcends words – a love only a mother can know. I cried watching her love him – I was so happy. Soon I got to hold our little baby for the first time; he was so tiny and I marveled at the miracle of life. I loved him the moment I laid eyes on him – for he was my son.

It is so hard to say goodbye after 10 years of life and love. I wish I had the power to heal him. I wish I could have traded places with my son. 

I will never forget a tender conversation I had with Mitch just after he returned home from the hospital to die. I was tucking him in and he wanted me to cuddle with him for a while. As I lay by my broken son, we gazed into each other’s eyes and had the most soulful exchange I have ever experienced. I told Mitch that while I had been scrambling to find a way to save him, it was he who was saving me. With tears in my eyes, I thanked my little boy for being such a good example to our family and for inspiring me to be a better daddy, husband and person. Mitch cried and told me how happy he was and that he felt loved. With a kiss to his forehead my little boy continued to cry happy tears and tenderly burrowed his frail body into mine and drifted off to sleep. I wept a strange potpourri of tears that night – and many nights thereafter. Little Mitch was then, and remains today, the most profound and painful gift of my life. And though I journey through the wilderness of grief, I’m on my way, but I’m not there yet.

There is nothing linear about grief. I have often heard “time heals all” as though that glib phrase should give peace of mind or assuage a grieving heart. At least for me, that phrase has little to no meaning – and in some cases it does more harm than good. I would be quite content to never hear that phrase again. Time alone is no healing agent; that is a loosely written fiction. I believe healing has less to do with the passage of time but rather, like all things in life, it’s what we do with our time that matters. Surely time is necessary, but it is a minor ingredient. If I spend my time finding ways to bind my wounds and dress them with healing things – I am more likely to accelerate my path to recovery. On the other hand, if I mask my pain or agitate tender wounds, they may never close or heal. Time is a neutral thing – it’s what I do with it that matters.

I am on my way to healing, but I’m not there yet. I don’t know that I’ll ever fully recover from the loss of my son. What I can say is today is better than yesterday; not because time has simply passed but because I am allowing myself to do what I must – to accept my sorrows, and to not run from them but rather let pain take its course. I am learning to grieve in my own way, to hurt as long as I need to, to cry often (and I cry often), to write and remember everything that comes to mind. And, of course, I pray. I pray for peace and understanding. I pray also that my son knows how much I love and miss him. What I wouldn't do to hold him for 5 minutes. 

I recently read a saying, “Those who mistake success for significance, will lead a deeply unfulfilled existence.” I pray I will never confuse the two. I would sooner give someone a boost, a smile or a loving hand than fill my wallet with that which does not satisfy. After all, you can’t fill an empty soul with empty things. 

Little Mitch, my broken son, has taught me how to truly live ... to think less on the things I get and more on what I give. For my little boy had nothing to his name, save some little toys and modest clothes, his material things were plain. If he had nothing but gave so much, I have much to learn from him. For he lived a quiet life of significance and my heart he did truly win.

I’m on my path to healing, the end I cannot see, for the wilderness of grief seems to stretch out to forever, even to infinity. Please be patient with me my son … for I am broken, too, just in different ways than you. I’m on my way, but I’m not there yet.

THE RISE OF GIANTS

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

THE PASSING OF TREVOR NIELSEN

It is with the heaviest of hearts we share the passing of Trevor Nielsen earlier this morning from complications arising from Duchenne Muscular Dystrophy (DMD). We were blessed to visit with Trevor yesterday afternoon at the hospital and our prayers went out to him and his family after we left. 

Today our hearts our heavy with grief and deep love for this family who loved their son so very much and wanted only for his happiness and health.

We were honored to meet this remarkable young man and family last year shortly after Mitch passed away. In this photo Trevor was getting some enthusiastic kisses from Marlie, Mitchell’s little puppy, while visiting our home. Because he had limited use of his arms due to muscle wasting Marlie had free access to give him a barrage of puppy kisses and she made no apologies for giving him all kinds of love. Trevor laughed and laughed and my heart sang with joy to see this young boy, whom I had just recently met, giggle and smile.

Tonight our family will have a moment of silence and a heart-felt prayer for the Nielsen family. For Jupiter is their home now and the gravity of grief will be heavier than ever.