With Halloween around the corner, I can’t help but think of Mitchell’s last.
Trick-or-Treating was always difficult for him. Because his muscles were wasting away he couldn't go very far … each year his Halloween adventures became shorter and shorter. Even though he had a motorized scooter, getting up and down, climbing a stair or two to reach a neighborhood door was exhausting for him. He usually couldn’t visit more than 6-7 homes before he could hardly walk and wanted to go home.
In order to help him, Mitchell’s brothers or sister would often take his trick-or-treat bag to the door while Mitch sat in his scooter on the sidewalk. Generous neighbors would lovingly place candy in his bag as little Mitch smiled in the darkness. He was always grateful.
There was another aspect to Halloween Mitch loved even more than treasuring candy unto himself. Mitch loved giving candy away at the door. To some of his closest friends who approached the door, Mitch would give them his favorite candy from his own bag.
I took this photo of Mitch on his last Halloween. He wanted to stay home and give out candy instead of trick-or-treating himself. Each time the door would shut he would turn around only to have a big smile on his face.
Mitch learned early in his life that in giving he received so much more than those who got; a life lesson he never forgot.
Later that winter my mother came to visit for a few days. We were cuddled in the basement watching a movie when Mitch struggled to get up from the couch and waddled in his funny way over to his grandmother and offered her some of his favorite cheese popcorn (from Popcornopolis). I don’t think my mother realized at the time (or even to this day) the physical struggle he went through to simply get up and share what he loved. I remember that moment so vividly. It wasn't the popcorn that really mattered to Mitch, it was the giving … and it was his struggle to give that made it all the more precious. To Mitch giving was getting.
Tomorrow will be a tender evening for me – for I will remember my little boy who loved to give more than get. I will miss seeing that big smile on his little face and most especially his warm embrace.
Not a day passes I don't think of my son’s quiet example: he gave freely when he had so little to give, and now that is how I want to live. I often marvel and wonder, “How could it be? A little boy, mortally broken, who taught me how to see ...” One day, with a weary and broken heart, I will fall to my knees and thank my Father for sending me Mitchie.
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.
I took this photo at a stop light as we were on our way to meet with Mitchell’s cardiologist. We were just told over the phone (at our request) he was at risk of sudden death. Frightened by the dark path that lay before our feet, we arranged to have Mitch spend the afternoon with his aunt (Sonya) so we could speak candidly about our son, his fate, and explore anything we could do to help him.
By the look on my dear wife’s face I could tell she was worried in ways only a mommy can know. I also tried to keep my broken heart from falling apart and I was fumbling, all over the place. Our precious baby was mortally wounded by DMD. This little boy we saw grow in our arms had also grown deep roots in our hearts and it pained us to see his life cut down by an invisible enemy that knows no mercy. None at all.
Seeing the look of deep worry on my wife’s face I grabbed her hand and said, “Honey, I don’t know what the future holds but I’m with you, no matter what.” We both cried softly on the way to the hospital. There we were … two adults who, in our children’s eyes, were supposed to know all the answers. We were supposed to keep our children safe. Yet we were frightened children ourselves. We were afraid of the dark … and that’s all we saw at the time … nothing … just darkness; for everything was unknowable.
A few years ago I had a conversation with an old friend just after we learned Mitchell’s heart was not doing well. With love and empathy in his voice he said “Life sure has a way of tenderizing us, doesn't it?” I turned to him and responded firmly but kindly, “Oh, and sometimes it pulverizes us.” At the time I had no idea how pulverized my heart would become.
So as we sat in the car, anxious to learn what was happening with our dying son, I remembered that years ago I made a promise to my wife that I would be the best husband I knew how to be; that I would never leave her. I was certainly no knight in shining armor and what I brought to our marriage was a great deal of imperfection … but I had a sincere desire to love and honor my wife. I still do. I’m not always the best at it, but I sure try. I’m pretty sure there’s a special place in heaven for people like Natalie who put up with people like me.
Despite my youthful fantasies that marriage would be easy, I have discovered marriage is hard. And a good marriage is even harder because it takes effort to rise above the routines that quietly erode relationships. I realized if I was not careful, the little things that used to make my heart skip a beat would suddenly have no heartbeat … and one day I might wake up and realize all I ever loved is lost. I never wanted that to happen to my family so I always tried to defend against that. Though we have had ups and downs and struggled, like every couple, we have always tried to be there for each other, no matter what.
And when death came violently clawing at our door and darkness settled in, we had a candle in the wilderness. We could see, under the dim light of faith, the path beneath our feet. That candle of love and light came from my beautiful wife and our Father’s heavenly sight.
The path is still dark, and sometimes grief makes the path darker, still. Though I wish to see where our journey will end, a step or two before me is all that I can see … and that is good enough for me. I won’t give up. No matter what.
Over the last 10 years, I've collected love notes and hate mail from my kids. This one, from 2008, shows Ethan really mad at me. I responded with a picture and words attempting to help him understand why I was frustrated, but more importantly that I loved him.
We've always encouraged our children to share their feelings openly and honestly because we believe that is the foundation to long-term trust and understanding. This is Ethan laying it all down - which I both appreciated and admired.
These letters, no matter the tone, make my heart swell with love for my family.
I have some very tender messages from Mitch that I will share soon - but I thought to share this message between Ethan and myself because it made me chuckle and it sparked a sweet interaction with Mitch.
When Mitch saw this note exchange at church he tugged at my arm and whispered, "Dad, just so you know, I still wuv you." I smiled and kissed his forehead and thought to myself, "One day you'll be really mad at me and think you hate me ... but I'll love you anyway. I'll love you always."
With a few more notes back and forth, Ethan and I were back to a good place.
Family: if I lost everything I own but still had them, I'd have everything I ever wanted.
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