This [center] photo was taken during Mitchell’s Make-A-Wish trip. The one thing he really wanted to do, but couldn't, was have a baby panda cuddle with him. Even though he couldn't cuddle with pandas Mitch was having the time of his life.
As the day had drawn to a close, after spending time at Disneyworld, we were walking to our rental car and Mitch stopped his scooter and started to run through fresh puddles just left by an early-evening shower. Mitch loved the theme parks, but he loved the simple things of life even more … like making a fort out of a cardboard box, splashing in puddles and running free. I loved the smile on his face this day.
Without realizing it, as they lose their ability to walk, children with DMD begin to modify their body movements to keep them balanced. The weaker they become the more pronounced their contortions. Mitch, as he ran to splash in puddles used his arms to keep him from losing his balance. I remember watching Mitch on his Make-A-Wish trip encounter bursts of energy and he would run short distances with an awkward gait. Mitch loved to run – and he wished so badly he could be like “regular kids.” Mitch was broken and different than other children. But he was mine. And I loved him. I still love him.
None of us could have supposed that within a few short years my sweet little son would be gone. And despite what my head knows, still my heart frantically runs to and fro in search of my boy.
Just after my father passed away I remember speaking with my Stake President (a leader in my church) about the loss of my father and the next phase of my life. I was hurting, alone and I was scared. I was about to turn 19 and had recently moved to Edmonton, Alberta to live with my father – who was very much alone. This discerning leader lovingly looked me in the eye and cautioned me to not run “from” my hardship, but run “to” what was next.
I always appreciated his deep wisdom and have never forgotten his timeless council. So, on that day, with tears in my eyes by the loss of my dad, I made a personal commitment to always face hard things and never run from them. What’s more, I promised myself I would run with purpose to the future.
Run to, not from. There is a difference in how we run … and that difference is profound.
As many of you know the original purpose of this Facebook page was to keep family and friends aware of Mitch and his condition. It was supposed to be a quiet place of sharing – and I assumed it would be invisible from the world, just like my family was. My hope was that Mitch would find a little comfort that a handful of people loved and followed him and occasionally cheered him on. But as he grew weaker and sicker more and more people came running to love him; so many of you were so good to him, and my family. Thank you. I was brought to my knees with gratitude every single day. I still am.
Over the last 10 months people from all across the world have done things in honor of Mitch and other boys they know and love who also have Muscular Dystrophy. They did what they could to raise money for PPMD, for research and raise awareness of my son’s killer. Here are a handful of people who ran because my son couldn't. They ran with dignity and purpose and I love each of them as though they were family.
These compassionate men and women ran with purpose - and so shall I.
And on that day I see my son in that place beyond the hills, I will run to him. I will run as fast as my legs will take me.
About seven years ago my in-laws invited our family to join them on a trip to Hawaii. Mitch was little, Wyatt was a toddler, and Laura-Ashley and Ethan were young and full of energy. The trip was a gift, but the experience of spending time together was an even greater gift. Today, the memory of that time together is the greatest gift.
Mitchell’s faithful Aunt Sonya came, too. Whenever possible she put Mitch under her wing and helped him enjoy life’s treasures before the hour grew too late. She knew the troubles that would soon come to our son in a way we did not. Her profession gave her a unique vantage point as she saw the biological horror show of DMD first-hand. She was careful to never frighten us but I could sometimes tell by the look in her eyes she was holding back a little – she knew the storms that lie ahead. But we had today.
We spent the better part of the day swimming, making castles and rolling in the sand. Grandpa even helped Mitch catch a few waves on a boogie board. He loved that. Mitch was so cute and playful and was always concerned about getting sand in his cute little bum. The water was warm as a gentle bath and I finally understood why some call Hawaii a paradise. As the day was yawning to an end I noticed Sonya and Mitch on the shoreline watching the sun as it slowly set. Mitch loved sunsets. I remember thinking to myself when I took this photo that Mitch was lucky to have Sonya. And I thought to myself how lucky all of us were to have him.
I wonder what my son was thinking as he looked into the ocean, as far as the eye can see. I can still hear the surf crashing softly and the ocean wind as it whispers through the palms.
As I was meditating over this moment earlier this morning my wife came into my office and handed me a health insurance form to sign. I asked what it was for and she said it was to verify the termination of Mitchell’s coverage. In an instant my hands began to shake and my heart sank to the floor as we took one more step into our new, painful reality.
As far as the eye can see,
grief stretches vast, and deep
even to infinity.
But there is more to grief
than pain and sorrow,
it is the longing to see my son
on some tomorrow.
My wife took this photo of Mitch and me at his Make-A-Wish trip in Florida a few years ago. I loved carrying my son and I loved the feeling of his little arms around my neck. I miss that. I miss everything about him. As Mitch grew so did the burden of his care – but those burdens were an easy price to pay for the gift he was to us.
Moments prior to this photo Mitch had tripped and fallen to the ground. (see: https://www.facebook.com/photo.php?fbid=629906097039055&set=pb.192859897410346.-2207520000.1388340960.&type=3&theater)
DMD, a progressive muscle wasting disease, made walking increasingly difficult for our son. While boys are young and still able to walk they begin to fall easily – and falling becomes more and more frequent until they cannot walk at all. And when they fall, they fall hard because they do not have the strength or coordination to break their fall. Gravity and ground make for unfriendly opponents to these children. The moment Mitch fell on the curb his sister came rushing to help him and I remember getting teary eyed when I took that photo of her lifting him up. I had tears of sorrow for my boy who was innocent and good yet was required to carry a heavy, fatal burden; I also shed tears of gratitude for my daughter who was also innocent and good and did all she could to love and protect her brother.
I ran to Mitch and said “I’ll carry you” and in that moment he lifted his little arms toward me. My heart swelled. I held him tight as if to hug him as we walked a short distance to our car. I kissed his cheek and whispered to him. I wanted Mitch to know I would always carry him – for as long as I could – and so would his mommy. My wife took my camera so I could hold Mitch and she took this photo. I didn't realize the expression on his face at the time and I am so grateful to have it now.
There are so many ways to carry each other. Sometimes we must do it physically – but more often we can carry each other in other ways that are just as helpful. I believe one of the reasons we are born with weaknesses is not only that we might be humble and [with God’s help] turn those weaknesses into strengths, but that we might learn to set aside our own pride or self-interests and serve others who may not have the same weaknesses we possess. The economy of lifting others and carrying them with love and concern pays heavenly dividends if we jump in and do what we can.
I have never served someone with love and concern and thought to myself afterward, “I wish I didn't do that” or “that was a dumb thing to do.” To the contrary, every time I tried to lift another I felt a lift within me, too. There exists a profound doctrine that teaches that we not only grow grace by grace (step by step) but also grace for grace (we get what we give others). And when we carry each other the best we can we get what we give… and we grow.
Losing my son has broken my legs and my heart and every bone in my body. As a result, my steps have felt smaller, more tender and timid. But as my heart and bones are healing my footing is becoming more secure and more sure. I have spent my life trying to carry my son and now that he is gone, I get the sense he is now carrying me … as I am now the broken one.
This is my family, minus one. One special little boy who we all love so much and would give anything to have back with us. I know … I know … “Mitch is still with us”. But he is not. Not the way he used to be and not the way I want him to be. And for those who grieve, absence is all that matters. Absence is why we grieve.
I am sure the focus of this blog may lead some followers to believe we are fixated on the past. We are not. But the purpose of this blog is somewhat singular and it has become a place to remember, reflect and to find meaning in our own suffering. I have many more things to post here. I have written some things that are hard … very hard, while other things are funny and hopeful. Still some of them leave my knees weak while others stir something deep within me.
Many caring followers have reached out both privately and publicly asking how our other children are doing – worried that perhaps our sorrows are drowning out their needs. The grief each of us feels is unique and personal and there are many miles to go before our hearts are put back together again. In the meantime, we are doing this together.
Family, after all, is a team effort and we leave no one behind. Not one.
With that said, I want to say how pleased I am of all my children. I am proud of who they are and what they’re becoming. I have my wife to thank for that. While I am out slaying dragons and keeping the wolves at bay she works tirelessly for their benefit. I am humbled by her, daily.
We’re by no means a perfect family – but we give everything our best shot. We make mistakes; some big, some not-so-big. We've done our fair share of losing our way and finding it again. We are human and don’t pretend to be anything more. What we lack in other things we make up for in love. And there is no shortage of love in our home.
This photo was taken at Sonya’s wedding - whose colors were yellow/gold & purple in honor of Mitchie. It was a sacred, special day for everyone involved and there was no shortage of emotion – of every kind. The wedding photographer (this was her photo) had heard about our son’s story and offered condolences upon meeting us. We were touched by the goodness and compassion in her heart.
I love this photo because I see my sweet wife and 3 beautiful children who are all kind and good. It reminds me that I am blessed with more than I deserve. I love this photo because it is my family. But it also reminds me that this is what Duchenne Muscular dystrophy does to every single family. There are no exceptions.
This is my family, minus one.
Photo credit:
www.erinsummerillphotography.com
www.facebook.com/erinsummerillphotography