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
Yesterday I spoke of being a weary traveler stumbling down a broken road. This morning I awoke contemplating how life is a journey of many roads. I never imagined that Mitchell’s Journey would become woven into the journey of so many others. There was no way to know this journey of grief and sorrow would touch hearts and inspire people to choose different paths for their betterment. Or that people would rediscover love, family and faith. We are deeply humbled by all that has happened and still trying to put our heads around everything.
In truth, we would rather be an invisible family living out our lives with Mitch and our other kids. Mitch never wanted to be a catalyst for awareness or a source of inspiration … he just wanted to be 10. With all that I am, I wish I could have given that to him. But such was not our lot. To my great heartache, my son is gone and I can’t change that. But I can choose the steps before me – and I hope I can be like the Good Samaritan who stops to love and lift another.
It wasn't long after Mitchell’s passing I received a message from Melissa Dewitt of Colorado. Sometime prior she started following Mitchell’s Journey and was touched by our sons fight to survive. A stranger to us at the time she sent us a message that she might be in Salt Lake City soon and wanted to meet my family and visit Mitchell’s place of rest. With thousands of messages a month, it isn't possible to respond to everyone; though we try … we really try. Somehow the stars aligned and we connected. We were so touched by her kindness.
Within a few months Melissa and her family came to Salt Lake City and met us at the cemetery. It was both sobering and wonderful. They are such a loving, sincere family and we were blessed by the chance to know them. Since that meeting we have considered them dear friends of our family and our lives are richer because of them.
Just recently Melissa, having been moved by Mitchell’s Journey, decided to support PPMD – an organization that is leading the DMD & medical communities to find a solution to this fatal disease.
On May 18th Melissa will be running for “Run for Our Sons” … a PPMD fundraiser. For those who followed our story earlier last year, you’ll remember Pat Furlong of PPMD was the one that reached out to us and rallied the national medical community to try and save our son. Pat Furlong moved heaven and earth to try and save Mitch. We love and honor Pat and PPMD. They are making a difference. Every single day PPMD makes a difference. Every day they are driving solutions one step closer to a cure. But alas, a cure remains miles away.
For those who are able, please support our friend Melissa in her efforts to honor Mitch and run for our sons. http://www.parentprojectmd.org/site/TR?px=1550221&fr_id=3210&pg=personal
I am inspired by the many Good Samaritans we have met along our own journey. Melissa is one of them. She, like all of us, has a life and/or family to love and care for. She has a journey and road to travel that is uniquely hers – yet she decided to spend time and energy to help others who are afflicted with DMD. Other boys like Mitch. I love and honor her for that.
And then there’s Pat Furlong … a remarkable mother who lost two boys to DMD. Two. My eyes well with tears as I contemplate the enormity of her loss; two wonderfully, precious sons just like Mitch. She didn't shrink under the profound sorrow of losing her boys – rather she rose like a lion in defense of our sons and started PPMD two decades ago. Her road was also broken, yet she carried her broken heart while leading and lifting others. I am in awe of her.
So on this journey of many roads, I salute the Good Samaritans who take time while traveling their own journey, often at the expense of comfort or convenience, to help another. Melissa & Pat, and so many of you who reach out to lift and love, to lead and change … you inspire me. Every single day, you inspire me.
The day was drawing to a close as we left a neighborhood park. We had packed our things and headed home to have an evening BBQ in our back yard. As we started our way up the grassy hill I took this photo of Mitch. To the left of this image (out of view) is a hill with a paved path that is the way home. But to get there Mitch had to drive to the street, turn left, and then backtrack on a different sidewalk to the path that would lead him home. We never left Mitch behind and he was always accompanied by at least one of us. But on this occasion Mitch wanted to jump-start his commute and got ahead of us. My heart went out to my son because even though we were there for him in every way we could think, in many ways he remained alone.
Everywhere we went Mitch had to take the long road. Circumstance often required him to leave the crowd and sometimes go great distances in order to navigate his scooter and go where his friends went. For him the party was always “over there” and sometimes he would miss out because of the time it took to get places. But Mitch always smiled and tried to make the most of what he could do. Yet, deep inside and rarely voiced, he longed to be like other boys and do what they did with ease.
On one occasion, while attending a week-long MDA camp, Mitch saw a young man with DMD on a ventilator and said to his Aunt, “I’m the lucky one.” Sonya, his aunt and second mother, held back her tears knowing the time would come that Mitch, too, would need breathing assistance. The road ahead for Mitch, if left uninterrupted, was longer than he knew. But he was too young to carry a knowledge of such heavy things, so she kissed his forehead with a soft smile and said “I love you.”
“I’m the lucky one” … I suppose in a manner of speaking he was. Luck, after all, is relative. At least for Mitch the world he had grown to love would soon be taken from him piece by agonizing piece. With the passing of each year Mitch was on course to lose muscle strength until he would no longer be able to use his arms, neck, breathe, eat or swallow. This little boy who loved to wrestle, explore the outdoors, dance and use his body to drink life in was soon going to face some horrible, paralyzing realities. And though it pains me to think it, at least for him, perhaps he was the lucky one.
I remember the night I wrote my family about Mitchell’s diagnosis in 2005. He was only three at the time. I described how the road ahead for our son would be long and eventually he would go places we could not follow. Though we would be beside him, kissing him, loving him and cheering him on … the road Mitch was to travel was his, and his alone.
I knew back then I could not trade my muscles for his and give him my strength – though the lion in my soul desperately wanted to. I could not give Mitch my heart so he could live – though the broken daddy in me would have done anything to trade places with him. Like the ticking of a clock that keeps me awake when I desperately seek rest, every beat of my own heart reminds me I could not save him … and that breaks my heart.
When we started out on this journey I thought my son’s road would be longer … and I am pained that it was not. Where Mitchell’s road ended mine continues – and the road before me seems to stretch out as far as my mortal eyes can see. This path, this long road of grief and sorrow is perilous and difficult to navigate; but forward I go. Forward I must.
This experience has taught me in new ways that suffering is singular. Surely there are shared sorrows and there is comfort to be had in mourning with those that mourn … but at the end of the day, we must learn to cope with sorrow, disappointment and hardships on our own. We can help each other along the way, but nobody can do that work for us … and that is the long road, the work we must do alone. But alas, we are never truly alone … there is help from that place beyond the hills … even blessings unseen.
So as I travel the long road of grief I will remember my son’s words “I’m the lucky one” and count myself lucky beyond measure he was my son. And when I encounter others who travel this, or other long roads, I will stop and honor their struggle and I will love them. Perhaps together, for a moment, we can find rest … knowing full-well the road before each of us, however long and hard, will be for the best.
When we checked Mitch into the emergency room we knew things were serious, but we didn't grasp how serious things were until nurses started calling doctors and doctors started calling other doctors. Everything went from routine to rigorous in a big hurry. My little son was crashing and by the time he was moved to the Cardiac Intensive Care Unit (CICU) he was pale. He was different.
Natalie and I followed little Mitch to his CICU room but waited just behind the glass wall for things to settle. We didn't want to get in the way as the medical team was quickly trying to stabilize him. Mitchell’s eyes grew big as he watched this concerned medical team scurry about tending to his care. As I peered through the glass wall my heart sank and my soul ached. There was my son, my little soul mate, and he was in big trouble.
By the time Mitch was stabilized the ER doctor (Dr. Herman) who had escalated Mitchell’s case to the CICU came to our floor to see if Mitch even survived. When he walked in our room and saw that Mitch was still alive relief washed over his face. I was so touched that this doctor actually cared. My son wasn't just a case number, or a biological puzzle to solve, or body to fix … Mitch was a little person who had feelings and family who loved him … desperately. Humanity and compassion was clearly not lost on this doctor and his short visit, to show that he cared, did more for our hearts than he will ever know.
Dr. Herman knew what to be and when. He was all business when trying to save Mitchell’s life and get him into the CICU. But after the emergency passed he was human … he cared. I can say the same about everyone at Primary Children’s Hospital who cared for our son. They not only cared after him, they cared about him.
Within a few hours we would learn that Mitch was experiencing end-stage heart failure and that he had days to live. Weeks if he was lucky. We weren't sure if Mitch would leave the hospital alive.
During our week-long stay doctors and medical staff would occasionally comment how moved they were by our love and dedication toward our son. Natalie and I slept together on a couch made for one. We never really slept – but we tried to rest. These doctors told us that some children are left for extended periods of time and their parents seemed emotionally disconnected. What we thought was normal love and attention seemed unusual or uncommon to them. My heart broke for other children who were left feeling unloved.
When we told Mitchell he would need to stay at the hospital for at least a week his eyes filled with tears. He didn't want to be there – he just wanted to be home with his family and to play with his friends. By the time we left the hospital, having been discharged to die at home, my sweet son asked about his homework and wondered if his teacher would let him have a little more time to complete it. With all that he had experienced, doing his duty was top of mind for my son. Mitch, even in the depths of hardship, was an honorable and noble soul. I hugged my son and said, “Oh, sweet Mitchie, don’t worry about that. Let’s just go home and focus on family.”
Family and a pocket of lint was all we had left. Medicine had failed us – there was no cure. Transplant policies failed us – pointing to antiquated philosophies. And our hearts almost failed us – we were so scared.
After everything in our world failed, Pat Furlong with PPMD, and Dr. Cripe from Nationwide (who we honor as heroes) came rushing to help Mitch. But too much was happening too late.
There was nothing we could do but go home and love this little boy with all of our heart. And our hearts trembled.
Family and a pocket of lint … I would rather have that than all the riches of earth and honors of men. I am reminded of Oscar Wilde’s cautionary phrase, “Nowadays people know the price of everything and the value of nothing.” I pray I am never counted among those of whom he spoke … for the value of family is without price. And family has a value for which I would pay any price.
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Here is an image of Dr. Herman examining Mitch in the Emergency Room: https://www.facebook.com/photo.php?fbid=622937311069267&set=pb.192859897410346.-2207520000.1388611662.&type=3&theater