It was the end of a long day at Universal Studios in Florida. We were about half-way into Mitchell’s Make-A-Wish trip and he was having the time of his life – and so were we. Attached to my camera pack was a carabiner that tethered gifts and other souvenirs we picked up here and there – but that wasn't the real gift I carried this day. The greatest gift was my family – and that wasn't lost on me … not for a second.
As we made our way out of the park Mitch drove his scooter near me, like he always did, and reached up to hold my hand. I loved holding his hand and I yearn to do it again today.
I always dreamed of being a father. I loved my kids long before I ever laid eyes on them. As a young man I used to wonder what they would look like, the conversations we might have and the adventures we would enjoy together. While other boys were catching frogs or setting fire to empty fields, I dreamed of being a dad. Oh, I've had my share of youthful shenanigans and misadventures. I've even caught a few frogs and set a few fires. But my heart always wondered what fatherhood would be like.
I remember early in my professional career overhearing some of my older colleagues talk to their kids on the phone. I was young and single and would act like I wasn't paying attention but I was listening and I wondered what it would be like to have little kids of my own. While not an envious man, I was sometimes sorely tempted when I saw others with children. I was so excited to have kids of my own.
Twenty years later I have found my wish granted beyond my wildest dreams. Although my cup is cracked and tattered by grief and sorrow, it is overflowing with love and gratitude.
There’s a saying: “The greatest gift you can give someone is your time. Because when you give your time, you are giving a portion of your life that you’ll never get back.” I’m not always the best at this. But I try. And when I fail, I try harder the next time.
I don’t know a lot of things. But one thing I do know is when I am old and dying I won’t be reaching to hold on to car keys, fancy things or any thing. Instead I’ll be reaching to hold the ones I love. For they are my real treasures - and that won’t be lost on me. Not then. Not now. Not for a second.
About 14 years ago I started a storytelling tradition with my kids that would only require music and one’s imagination and then the universe was at our fingertips.
On my iPod are playlists that contain all manner of movie & video game scores in random order, across every genre. Often, after their teeth were brushed and my kids were tucked snugly in bed, I would turn on a playlist and narrate random stories out of thin air – and my kids were the heroes. Because the music would shape the narrative, none of us knew where we were going. Each night was an untold adventure waiting to be explored and as lights dimmed and the music began to play my children and I would be swept far away in story. Suddenly the bedroom walls crumbled to the floor and the ceiling unzipped and they saw a night sky with strange planets, or suddenly they were crossing a vast field of grass on a journey surrounded by storms that were closing in, or they were atop a glass-covered skyscraper in a mega-city about to launch their jet-pack. Wherever we went it was magical and unexpected.
Before long this practice no longer soothed my kids to sleep but excited them – instead of getting tired they would sit on the edge of their mattress, with hearts pounding, wondering what was next. Sometimes they would argue “No I want to be that guy!” It wasn't long before they began making plot requests and wanted to help shape the story.
These journeys of the mind are always fun. So much so, I even do this with my employees when we are driving long distances. Each of them take a turn telling a story on the fly in response to a song. They don’t get to practice or rehearse, they only respond to the music in real-time – and as the tempo changes, so must the story. Suddenly 100 miles feels like 5 minutes and that we've read 300 fascinating books in the blink of an eye.
I loved this tradition with my kids. I don’t do it as often as I used to. I tried it again with Ethan about 3 weeks ago. We were driving home from his lacrosse practice and I told him a story against the backdrop of song. He was quiet and inside I wondered if he thought I was being an absolute geek. At the end he looked at me, paused and said, “Dad, that was awesome.”
On the night of this photo Natalie and I had just tucked Mitch in. Faithful Marlie snuggled near his feet and he was set. Then he asked me in a soft voice, “Dad, will you tell me a story?” My eyes instantly filled with tears and my throat swelled. “I would love to tell you a story, Mitch.”
I ran to the next room to get a speaker and iPod and for the next 10 minutes Mitch and I went on adventure together. Once again, the ceiling and walls fell away and we were transported to a magical place. We started in an ancient forest where the trees could whisper secrets of a time long gone; we could see the night sky and a fabled moon that was only visible through the forest trees. We traveled vast distances together and Mitch was the hero. All along I kept thinking how in real life this little boy was an even greater hero to me. In life, Mitch couldn't jump great distances nor did he wield physical strength like he did in my stories, but in every way that mattered he was stronger and nobler than the sum total of every character I could imagine.
As my story concluded I knelt by Mitchell and told him, “Son, even though you were the hero in this story, you are my real-life hero, too. You are the most amazing young boy, Mitch. I love you.” He asked why I was crying and I told him it was because sometimes parents have so much love in their hearts for their children they don’t know how to express it, and they cry. I told Mitch that was the magic of being a parent: you create the most amazing miracle of life and watch it grow, develop and become. Parents cry because they love; and love is the most magical power on earth. Love heals and protects, it renews and forgives, it lifts and defends … love gives meaning to life. To know love is to know God.
This was the last story I told Mitch. Not many days would pass before everything in our world began to unravel and we would experience the most sorrowful story of all. A story that would break my heart. Forever.
I have traveled the universe and back with my children and we have visited every age we could imagine, even the age before time. I have discovered parenthood is the greatest adventure of all. It’s a story that needs no soundtrack to be told; a story that frightens and enlightens us … and a story of love and service that never gets old.
I pray that at the end of my days, when my story is ended and I take that final journey to that place beyond the hills, that my son will be the first person I see. And I will run to him and give him a father's embrace. For I love him. I miss his kind soul, I long to see his sweet face.
I know not the sorrows tomorrow may bring.
But today I've found peace. Today my heart sings.
For my child happened. A miracle of life and love.
A blessing from God and the heavens above.
Though storms of grief surely will come.
I look to the light. And I run.
It was late August and we somehow managed to survive our first summer without our son. Saturday morning had come and it was a beautiful, almost dream-like day when we went to visit out son’s place of rest. A few moments prior to this photo I captured Marlie sitting at the foot of Mitchell’s headstone staring at it. After a few moments Natalie quietly sat by Marlie. This little girl, this furry friend to our son and family, looked up at this broken-hearted mommy.
I know dogs are intuitive for I have seen their intuition with my own eyes. This same puppy, much smaller at the time, never left Mitchell’s side while he was sick. And the night Mitch passed she curled around his head as if to comfort him – like a mother would cradle her baby. Now there was another person that needed comfort – a mother who was dying on the inside. I wondered at this moment what Marlie was thinking – did she know that Natalie was in pain? Sometimes I think so.
I sensed Marlie missed Mitch because I would often find her laying on his bed as if to wait for him to come home. She would lay on his pillow in the same way she did when Mitch passed away. I was always saddened to see that.
A few weeks after Mitch passed away a dear friend of our family and mother to one of Mitchell’s best friends, Carter (who I will write about soon), approached us and asked if she could start a 5K run in honor of Mitch called “Miles for Mitchell”.
We were so touched by her thoughtfulness. Natalie loves to run - it is her way of coping. Before Mitchell passed away he said in a soft, almost breathless voice, “Hey mom, you can take Marlie running with you every day. I think she would like that.” Mitch wished he could run like other kids but his muscles were too weak. Natalie kissed Mitch softly and said, “I sure will. I will run with Marlie.”
Natalie has kept her promise and runs every day with this sweet little dog.
We were overwhelmed by the love and support from our local community, neighbors and friends last year. They rallied to help us in a time of crisis and great need – and we were deeply humbled and taken to our knees. That run, Miles for Mitchell, did so much for Natalie’s heart on her path to healing. For she was surrounded by people who cared, who loved her and felt after her broken heart. I suspect this year's run will do the same for her. And that makes my heart glad - for she hurts, too.
For those who want to attend our second annual Miles for Mitchell, the run will be held May 3rd. You can find more details on www.facebook.com/MilesForMitchell or you can register here: http://tinyurl.com/ka5qu89.
Last year the run was aimed at helping our family pay off medical bills and cover funeral expenses – for which we were deeply grateful.
This year, and every year hereafter, we will run to raise awareness for DMD and its catastrophic outcomes, to support Mitchell’s Journey, and help others who hurt.