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We had just arrived at Primary Children’s Hospital and sensed things were serious, that we were running out of time and we needed to hurry. Natalie began the process of admitting Mitch as I pushed his wheelchair to the waiting room. I sat across my little boy and started to talk to him. Over his shoulder I saw my sweet wife taking care of the paper work. Mitchell’s breaths were shallow and he grew pale as the minutes continued. 

I couldn't help but notice the paper hearts attached to the wall behind the receptionist. I was reminded Valentine’s Day was approaching and I began to contemplate the many layers of love. I thought to myself how sweet and tender Mitchell was and how deeply I loved him. The moment my wife told the front desk Mitch had DMD and Cardiomyopathy and we suspected he was in heart failure, they immediately dispatched a nurse to check his vitals. Within less than a minute they rushed our son past everyone in line. Things were more serious than we thought.

As we sat in the examination room I recalled a saying I had seen throughout the hospital that said, “The Child First and Always.” That phrase always brought me some level of comfort but it was then I realized this was no slogan – that, in fact everyone at the hospital truly cared. As things escalated, doctors and nurses gave our son tremendous care and attention. It was clear my son wasn't a number on a patient file; he was a little boy with feelings and they knew it. Though medically broken, they treated him like a little boy who loved, played, wondered, and hoped. This wonderful medical staff gave us a dose of compassion, which is medicine for the soul.

I cannot help but feel intense emotions when I see this image … for I see my sweet wife fighting like a lion to save our boy. I see my tender son who was in so many ways my soul mate – only he was the greater soul. He was my teacher. Mitch, a gentle as anything I know and was slipping away. My little boy who was broken and would soon lose everything – if I could only go back to this moment and love him even more. 

Perhaps one of the hardest things with grief is wanting one more. What I wouldn't give for one more hug, conversation, kiss, or cuddle. What I wouldn't give for a day. An hour. A minute. How I would spend that time differently. When I see this image I feel great pain because my son is gone and I want him with me. But I also feel an even greater love. It is a funny thing that love is both the source and solution to our pain. I am in pain because I love him. I am healing because I love him.

Mitchell’s Journey has taught me life is a story and we are the authors. Only we cannot pen what happens tomorrow, we can only write the story one step at a time. I am beginning to see my son came to earth broken so he could teach me. I am no teacher. I am just a student with a heavy backpack. But I am taking notes. I am listening and am learning.

Tonight my wife and I will take our kids to The Olive Garden in honor of our little boy. We will spend time as a family because family is what we love the most. We will laugh, we will smile, and we will remember. 

I don’t know what tomorrow will bring, but with each step I take I will write my story … and mine will be a story of love.

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Excerpt from my March 7, 2013 post “Fingerprints on the Wall”:

“There is a poem I have long admired that reads: “It will be gone before you know it. The fingerprints on the wall appear higher and higher. Then suddenly they disappear.” 

While Mitchell’s fingerprints on the walls of our home may disappear, he has left an indelible fingerprint on the walls of my soul. In life, he taught me how to love deeply, how to laugh loudly, and how to play freely. In death, he taught me how precious and fleeting time really is. He helped me understand with great clarity time is finite and perishable. 

It is safe to say we are prepared for [the funeral] … except saying our final goodbye ... goodbye to the fingerprints on the wall. 

But alas, his fingerprints, the ones that matter ... remain.

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Luke, Mitchell’s best friend also came with us. We love Luke as though he were our own son. He misses Mitch.

It was a sacred night of love and remembering. At the end Kristin asked if it would be appropriate to have a closing prayer – which I volunteered to give. I thought I’d be able to keep it together but found myself immediately broken inside as I struggled to utter a word. My eyes filled with tears as words stuttered and fumbled out of my mouth. I was overwhelmed with gratitude and sorrow, faith and heartache. Eventually I was able to find a few words and thanked God for gift of Mitch and asked that we would remember my son’s goodness and somehow find ways to pay that goodness forward.

Mitch loved Christmas, he loved family, and he loved to love. My heart was both heavy and light.

A thick fog had crawled across the landscape and it seemed as if the city lights and the hustle of world had all but disappeared … one could scarcely see past the cemetery. The fog had drawn focus to what was happening at that moment … all we could see was my son’s burial plot and each other. It was beautiful and strangely comforting. It was a goldilocks event; the songs were perfect and thereweren’t too many … it was just right. The carols started with some of Mitchell’s favorite holiday jingles and gradually became more spiritual in nature. I found myself on the perimeter a bit because I was emotional but also wanted to capture what was happening with my camera. It was a beautiful evening and while our bodies were cold, our hearts were warm.

A local restaurant owner gave our family hot chocolate. She was such a kind and compassionate woman and has been following Mitchell's Journey. We were so touched by her goodness and generosity.

www.facebook.com/CopperRimCafe 

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This summer Mitchell’s Aunt Sonya married a wonderfully loving man. On the evening prior to her wedding we attended a family gathering at my in-laws to celebrate the union of two noble souls who each had their share of hardship and sorrows and were blessed to find one another. It was a moment of rest and reunion, a celebration of love and family and a testament that clouds do break even though the storms of life can seem to last forever.

As we sat in the warm shadow of the hills there wasn't a breeze within 100 miles, I’m sure of it, and the sounds of evening began to softly fill the air. It was a beautiful evening … the kind of evening Mitch, who loved nature, would have come to me and said “Dad, you have to come outside and see this.”

Each of Sonya’s brothers and sisters took turns offering well wishes and honored a woman who spent her life in the service of others. Many made reference to our fallen son and recognized her tender relationship with him. There was a spirit of love and gratitude that night that seemed to reach the heavens and beyond. On this evening an ordinary backyard became hallowed ground. 

When it was Natalie’s turn to honor her sister she struggled to speak through emotions that weighed heavy on her soul. Sonya was a faithful friend to Natalie and in many ways a second mother. She was also one of Mitchell’s most ardent champions, always looking out for his medical needs and helping us navigate a bewilderingly vague landscape of “what’s next”. 

Natalie told her sister how much she loved her and how grateful she was for being there in times of trouble. Two conversations were taking place; one was spoken and the other felt. On the one hand there were words of love and appreciation and on the other feelings of tremendous sorrow. At the end of her tear-filled tribute, I remember seeing my wife hug her sister and they both wept at the loss of a little boy they loved deeply. The look of love and anguish on my wife’s face broke me. 

I found myself taking more photos than normal this day so as to hide my face that, despite my best efforts, was racked with emotion. All I wanted to do was crawl inside a bush or a forest or a deep cave and water the earth with my tears. Yet despite the pain of this moment, seeing my tender wife suffer a parent’s greatest loss, I also saw beauty.

Aristotle had it right when he said we become what we repeatedly do. 

In this moment I saw two women who spent their lives offering love and grace to others and in turn they received the same from many. Sure there have been some dark souls who didn't reciprocate their tender love and goodness. But they never let the darkness of others get to them nor the hardships of life make them bitter. They continued to love and lift others freely and make the best of whatever difficulties befell them. These two women became what they repeatedly practiced. 

We often think of shields as being hard and impenetrable. But there are other shields that cannot be seen and sometimes they present themselves as an earthly paradox. Some shields are strongest when they are soft; and in matters of the soul it is a paradox with a heavenly promise. In their case, these two women became what they repeatedly practiced: soft and graceful. And when hardships came and threatened to destroy them, the grace and goodness in their hearts became a shield unto them. The softness in their hearts protected them from becoming calloused, hardened or resentful. Instead of letting life’s hardships make them bitter, the grace in their hearts made them better. 

As I think upon this tender moment I cannot help but see great sorrow by the loss of my son. But in the depths of this sorrow I also see grace. And where there is grace there is beauty.