Here is the keynote shared at the 2018 Annual PPMD Conference. It was a blessing to share some ideas on how to find joy in a journey otherwise punctuated by difficulity and discouragement.
This May: Featured Essays on the Making the Most of Time
A few weeks ago, I was honored to speak at the 2017 PPMD conference. In this short address, I shared a tender story about Mitch and the ocean and what I learned about responding to things we can't control. I also shared other sweet experiences that remind me to treasure each moment and take special care of ourselves, our community and our children.
The rest of the conference was dedicated to science, therapy, clinical trials, and other important issues. But for this brief moment, we set science aside and talked about the things we treasure most - how to care for the ones we love, including ourselves.
If you enjoy little stories of Mitch, there are some tiny gems in this keynote. I hope something here blesses your life in some way.
Last week, while attending a #ppmd conference, Natalie and I met several families with whom we discovered an instant bond. I gave this young boy, Logan, one of Mitchell's medals from our annual#milesformitchell run. I wanted him to know that he was remarkable and that I admired him. He was such a sweet child and reminded me of my son. I was also grateful to have met his parents, who were as strong as anyone I've ever known. I only wished there was enough time to sit down with every family and learn their story.
Losing our son didn't just break our heart; strangely, it enlarged it. Since then, we have learned to love others and empathize in ways we never imagined. The further I head down#mitchellsjourney the more I'm beginning to realize that we may not be able to save lives, at least tomorrow, but perhaps we can help save families. For if we save a life, yet lose our families, we may have won a battle but will have certainly lost the war.
So grateful to spend time with some newly diagnosed families and hear their stories of heartbreak and hope. Listening to them has given us ideas on new ways to help. We love #ppmd and the tremendous good they do for others.
Mitch loved shenanigans.
It was a hot summer day. Ethan was opening a present for his birthday when Mitch sneaked behind him and tried to smash a water balloon against his back. Because his arms were already weakened by DMD, Mitch struggled to lift the little water weapon above his shoulders. Lunging his body forward, Mitch hurled the balloon toward his brother with all his might and ran away giggling. I loved the sound of Mitchell’s giggle; endearing as it was contagious.
My little boy never missed an opportunity to live. I don’t mean live as in breathing – though he was very grateful to be alive. I mean to say Mitch never missed an opportunity to be in the moment … to love and laugh and drink life in the best he knew how.
Sometimes bitter ironies are the strongest teachers.
Grief is another ironic teacher. I have learned, as my friend Pat Furlong (Founder of Parent Project Muscular Dystrophy) taught me not long after Mitch passed away, that grief never really goes away. She, being no stranger to grief, told me that grief is a chronic condition: you don’t get over it, you don’t go through it … you just learn to live with it.
So, I have found grief ironic because while it has the potential to drain joy and life out of living, it has taught me to appreciate life in new and meaningful ways.
Such is the duality of grief: to be happy and sad … to be whole and broken all at once. Though I may laugh, smile and be filled with joy at any given moment, at the same time I carry the weight of grief … the weight of wanting my son back in my arms. Inside the heart of those who grief is a soul that yearns for joy and happiness, yet sorrows in what is lost. It is to be okay, but not okay … and learning to accept that’s okay.
That is learning how to live.
This Memorial Day weekend, I will honor those who fought and died so others may live. At the same time, I will also reverently honor my little boy who fought to stay alive and died ... and in so doing taught me how to live.
As Mitch inched closer to the abyss he became more emotional. Already physically weakened by the catastrophic muscle wasting of Duchenne Muscular Dystrophy, he was now suffering from low oxygen because his heart was barely working. The heart is a muscle, too. Simple tasks that were once easy for him to perform were now nearly impossible. He didn't understand why Legos were suddenly so perplexing. Even his fine motor skills were greatly reduced. Mitch would weep because he wanted to be a little boy and this invisible monster had not only taken away the strength of his muscles but now his heart, which affected his mind.
In this photo Mitch was trying to build a Lego set that was gifted to him by a Mitchell’s Journey follower. He was so excited to build it and was touched that so many people cared. When he couldn’t make sense of the instructions he began to weep. I immediately set my phone down and held my son in my arms and kissed him and told him Daddy would help him. Mitch eventually calmed down and asked, “Dad, why can't I build Legos anymore? They are so easy. I don’t understand.” I responded softly, “Oh, Mitch, your heart is so tired and in need of rest. And your mind needs your heart. Because your heart is tired, so is your mind.” Mitch closed his eyes and rested a while. I wish I could have held him in my arms forever.
Mitch was remarkable in his fight to survive. His hospice nurse was startled how his body fought valiantly compensate for organ failure. “Your son is a fighter”, she said, “one of the strongest I've ever seen.”
Fast forward a few weeks and I would be reeling in grief over the death of a little boy who was in many ways a best friend to me. Though I was his father, the little boy in me lost a dear friend, too. And that hurt. A lot.
Then, in May of 2014 I received an email from a woman on behalf of her adopted son, Marco, who was an MMA fighter. She said her entire family was touched by Mitchell’s story and wanted to help raise awareness in honor of my son. She asked for permission to put Mitchell’s Journey on his T-Shirts, fight shorts and banners. I gave them permission and sent her the logo files so the printers could do it right.
I wasn't sure what would come of it, but something inside me felt it was right. A few months later I would then watch as this good man stand in a ring surrounded by a crowd of cheering fans. Marco had a look of determination in his face that was sharp, fierce and focused. By his mannerisms it was clear he believed deeply in God and wanted little Mitch to know he was fighting in memory of him. At that point the outcome of the fight didn't matter to me … for Marco already won. The bell would ring and in less than 2 minutes the fight was over and Marco was victorious. He fell to his knees and thanked God for the wind behind his sails.
What happened next brought me to tears. Marco would then take the microphone, undefeated, holding his belt and thanked God, his team. He then asked 14,000 people to look up Mitchell’s Journey and learn about a little boy who died from DMD.
Tonight, an hour from now in fact, Marco fights again in honor of Mitchell’s Journey and other boys who have DMD. What these boys lack in physical strength, Marco has in spades. That he gives his talents and strengths to the benefit these boys … and in honor of my boy, my best little friend, humbles me to my core.
Unlike Mitch, Marco has all the muscle and strength anyone would ever need. But Marco also has a heart … and a most sincere one at that. Regardless of tonight’s outcome, Marco, you have already won. From the bottom of my heart, thank you for remembering my son.
One more thing ...
There is another group who fights just as fiercely and honorably as Marco. Pat Furlong and Parent Project Muscular Dystrophy ... they tried to save my son from heart failure. I honor them for their continued efforts to improve cardiac care in kids with DMD. Here is a link to their page in honor of Mitch: https://secure2.convio.net/ppmd/site/Donation2;jsessionid=897727A6001B3EB4FE400EF84444784A.app272a?4380.donation=root&idb=1525494756&DONATION_LEVEL_ID_SELECTED=1981&df_id=4380
This photo was taken a few months after Mitch passed away, during the early summer of 2013. My kids were at Cousins Camp – a kind of family reunion for young cousins and their mothers. My oldest sister, Diane Wunderli, who was a faithful supporter to my family and little Mitch as he slipped into oblivion had purchased some floating lanterns and wanted to set them off in memory of my little boy.
She was one of the precious few who almost had a front-row seat to the horrors of losing our son. There were times she saw my little boy toward the end struggling and she would step away in tears. At one point she read a post about Natalie and I sitting on the hard floor in the hallway just outside Mitchell’s room so we could weep and not frighten him. When she read that post she gave us cushions to sit on and Kleenex to dry our tears. This woman was then, and is today, a living example of what it means to comfort those who stand in need of comfort. It is one thing to talk about doctrines, it is quite another to experience them. Having been on the receiving end of that profound doctrine has been humbling. Her comforting us when we were very much in need of comfort continues to pay emotional dividends to us today – and for that I am grateful.
I wish letting go of grief was as easy as releasing a floating lantern into the sky. I wish that a single memorial might assuage my sorrow and allow me to let go of all that hurts. But life is not that easy.
I have spent a great deal of time thinking about grief rituals and why we do what we do when we lose the people we love. I don’t know the answers – but I am beginning to understand that each grief ritual is as unique to our souls as our fingerprint or DNA is to our mortal bodies. What’s more, how we manage our grief is a very personal journey – and, so long as we don’t hurt ourselves or others, there seems to be no wrong or right way to grieve. Unfortunately some people who sit comfortably on the sidelines of grief, thinking they know best, confuse the hurt someone feels for hurting themselves. They try alter their grief path by saying, “You’re stuck.” Or “You shouldn’t feel that way.” Or, “it’s time to move on” and all manner of idiocracies.
I have discovered it is far better to listen with love and tell those who hurt you care. We can no more force the healing a broken heart any more than we can force a deep cut to heal. But we can create an environment where healing can take place … we can clean and dress our wounds carefully and keep them free of harmful things that might infect us or prevent healing. But at the end of the day emotional healing happens from the inside out.
There are so many ways I've seen others grieve … I know a woman, for example, who lost her husband and has made a lovely treasure chest which will slowly become home to treasured items that belonged to him. When the chest is full, the rest of his belongings will likely go. Others choose to keep everything. Some push everything away and want nothing to remind them of their heartbreak. I see people regularly visit the cemetery and spend time near their loved ones. Some write songs while others decide to take up arms in a battle to beat the thing that took their loved one away. Pat Furlong, for example, lost two of her sons to DMD. She lost two Mitchell’s. I cannot imagine her sorrow. Yet in her own grief journey she managed to turn rubble and ashes into beauty and hope; she started Parent Project Muscular Dystrophy, which is now a beacon of light and hope for families who face the same disease that took my little boy, and hers. Still, there are others grieving who are simply treading water trying not drown in the deep and dark well of sorrow … people whose hearts are so broken getting out of bed each day is a monumental victory. There are so many ways to grieve – and each grief journey is unique. And that’s okay.
In ways I have never imagined, I am beginning to see beauty in grief. Not that grief is a pleasant thing – to the contrary, grief is a bitter cup from hell. But grief is also an evidence of love – and that alone is paradoxically beautiful. Each tear is a memorial of profound love and longing. Each heavy chest and sunken heart is a camouflaged prayer to heaven that our loved ones will know how much they are missed.
Grief is not only about the pain of loss … it is also a very real wrestle of the soul with a seemingly endless inquiry of “what ifs” and “Did I do enough?” Though my heart is still heavy over the loss of my son I have come to terms with a certain truth: despite feelings of self-doubt and anguish over what might have been, the best we can do is quite alright, in the end.
I’m still contemplating grief rituals - what they mean and why we do them. All I know is they play an important role in healing. I wish I could release my grief like my sister did of this lantern. My own grief journey has taught me that grief is not something I can simply let go, for it is part of my soul now in ways only God can know.