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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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As I drove home tonight I stopped by the cemetery to see Mitch. My sweet wife has always been mindful of Mitchell’s flowers and each month arranges something thoughtful and sweet for his vases. I believe that is part of her grief path and I think it is beautiful. 

By the time I arrived the sun was already behind the mountain and the sky was getting dark quickly. It was especially warm today and I could almost feel a hint of spring and a promise of warmer days to come. I love each season but there is something hopeful about spring. Soon I’ll be able to sit by my son again and write. I have missed that. 

As I stood by my son’s headstone contemplating my life with Mitch, I couldn't help but notice a balloon on each side of his headstone that said “I love you.” Tears filled my eyes as I thought to myself, “More than you know …” 

My heart, while broken, has grown.

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It was a cold, blustery day in December. A winter storm was in full force and it seemed as if we were inside a freshly-shaken snow globe. Everything was white, soft, pure and beautiful. A thick blanket of snow covered everything and dampened the sound of the world; suddenly noises were less sharp and the harshness of sound seemed a little softer.

We decided to take our kids to the doctor’s office for Natalie’s last check-up before she was to deliver Wyatt. As we sat in the examination room Natalie told the kids to quickly feel her tummy because baby was kicking. Each of my children ran to her, reached up and softly placed their hands on their mommy’s tummy. Tiny Mitch, barely able to reach, also felt Wyatt kick and he said excitedly, “I can feel it! He’s moving!” 

As I photographed this moment with my family I had a moment of truth. I marveled that we even had the capacity to create life - and what a life our children are. Each child, each human ever born is so remarkable in their uniqueness, identity and potential. Life is a miracle. 

Just recently I listened to a dialog among scientists who were discussing the origins of human consciousness. It is a problem of modern science that confounds even the most learned. Surely in the years ahead science will make discoveries that lend insight, but there will always be matters of the soul, of intuition and spirituality that transcend biology. We cannot expect to understand things of the soul without using the very instruments of the soul. In the same way we cannot see ultraviolet light through binoculars, we cannot see matters of the spirit through the wrong instruments. 

Life and the essence of consciousness is not only a miracle it is a mystery deeper than the oceans.

In the very moment I took this photo I was overwhelmed by the miracle of life; the miracle of these little children each of whom I loved so deeply – and yet another was on his way. I realized anew that life is a supernal gift. And though, through my lens, I saw my son who was fatally broken, my heart was filled with gratitude – for they were mine. My little miracles. My little ones. It was then I remembered we are all little ones. 

As I work through the grief of losing my precious son I am sometimes tempted to think life is on pause and will begin again after I have grieved. But then I realized, in another moment of truth, that kind of thinking is foolishness. Grief is part of life … no different than love, laughter, fear, doubt, faith, and so many other things. I don’t want to die one day and realize I never really lived … because my mind and heart were sleeping or I had my head in the sand. I have a life, but am I living?

I have discovered that fearlessly being in the moment and learning to accept it – whether terrible or lovely – that is living. 

Perhaps one of the great lies we tell ourselves is to believe we are only living when we are happy … as though unbridled joy, at the exclusion of sorrow, were our birthright. To the contrary, our birthright is to become more than we are – and like anything of value it won’t come easily. Personal growth and becoming will take effort, opposition and struggle – precisely why we are here in the first place. Surely happiness is part of life, but living also includes everything else. If we are waiting for bliss we are waiting to live. 

Life is a miracle and a gift. Living is, too. I intend on doing both as long as I am able to.

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It was bedtime and little Mitch wanted to visit his big sister in her room. Mitch loved Laura-Ashley and she loved him. A tenderer sibling relationship there never was. 

My daughter, an honors student, always had a lot of homework to do and the stress of meeting her assignments was ever-present – but this young woman valued love and family above all else. No matter what was on her plate she was always quick to set everything aside in order to give Mitch her mind and heart. In my mind I can still hear the sound of her sweet voice whenever she spoke with him. Her tone with him was as unique and tender as their relationship. 

Mitch sat on the edge of her bed and they talked for a while. Soon Mitch yawned and she knew it was time for her little brother to sleep. So, Laura-Ashley hoisted this tired boy on her back and carried him up the stairs, knowing his muscles were too weak to climb them anymore. I was so humbled to see this act of love and service. 

I took this photo about two weeks before Mitch went to the hospital. He was dying and we didn't know it.

When I see this photo I can’t help but remember the night I knelt by this very bed and gently woke my daughter to tell her Mitch was gone. We both cried. I hurt for my daughter. I hurt for my son. I hurt.

I wish the death of a child didn't hurt so much. But it does. 

Every room in my home reminds me of my son. Without warning a memory will flash through my mind as though I were watching a grainy home film of a moment long gone. For the most part these memories, these echoes of the past, are beautiful and I love them. I can still see Mitch sitting on the end of the couch every morning quietly waiting to give me a hug before I went to work. I miss that. I can see my three boys laughing as they had Nerf wars in the basement. I can see my daughter helping Mitch with homework at the kitchen table - and my wife at her desk helping him with an art project. I can see Mitch everywhere but nowhere.

As a grieving parent, I've discovered euphemisms like “he’s there with you” don’t help. Mitch isn't waiting on the couch for me. It is clear to see the couch is empty. My son is not in his room. His bedroom is profoundly empty. His wheelchair, covered in cloth, remains unmoved. Everything echoes. He is simply not there … not the way he used to be. And for a grieving parent that’s the point: the ones we love are gone from our lives. 

As I have contemplated the echoes of emptiness I also recognized the echoes of memory and experience. One echo is hollow and the other is full … and it seems they are not mutually exclusive. At least for me, when it comes to grieving I think the key is to acknowledge both; to hear the emptiness but hear also the echoes of memory and love.

Never have my knees been more bruised – either from falling in sorrow or pleading to God. Though our empty rooms echo hollow, my heart is full of echoes that come from love and life experience. 

Yet there are other echoes that come from neither emptiness nor memory. These echoes come from a place before time and mortality. B.H. Roberts once wrote “Faith is putting trust in what the spirit learned eons ago.” That is why certain things ring familiar and true. I have come to understand learning (especially spiritual learning) is but a remembering. Perhaps better said, it is an awakening.

Indeed everything echoes. My home echoes empty without my sweet son. My heart is filled with echoes - memories rich with love and feeling. And if I calm my soul, I can hear echoes from that place beyond the hills. Despite my broken heart, bruised knees and legs on the brink of collapse, I can hear echoes that bring spiritual understanding. I hear an echo that reminds me if I am not my body – neither was my son. 

So in this place of echoes, where everything is empty yet full – I know there are echoes yet unheard that are meant to teach my soul. 

I am listening.