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.
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
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.
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