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Today we received a package from a kind follower of Mitchell’s Journey. Not a single gift or letter from any of you has gone unnoticed or unappreciated. To the contrary, we have taken careful notes and saved every act of kindness from the beginning of this journey. One day, somehow, we hope to personally thank each of you who have reached out in love and support.

I will share more of the thoughtful gifts we've received in the months ahead but because this one came today, I thought to share it now. My wife and I were so touched by this star.

To the family who sent this, we thank you. 

As I looked at this gift, this thoughtful star, tears filled my eyes.

I thought to myself: How can a fallen star shine so bright?

Then a whisper: Because what they give is spiritual light. 

Sometimes it is on our knees and in our deepest sorrows that we find God anew – and strength to face tomorrow.

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We were out of time.

The window to laugh, build Legos, have Nerf gun battles, and play games as a family had closed. As that window closed a new window was beginning to open. A window to that other place; a place that requires faith in order to see and feel … a place that hides behind a curtain of darkness where everything there is out of mortal view. I could feel the breeze from that new window that was opening – it was both calming and frightening. 

Each of us came to Mitchell's bed to have a sacred one-on-one conversation ... to say goodbye to a sweet little boy who had been woven into our hearts and souls. As hard as it was to say goodbye then, it is infinitely harder now that he is gone. 

This was the end and deep inside my heart I was terrified. Sweet Mitch knew he was about to die, yet he faced that harsh reality with dignity and selflessness. He wanted his mommy to know he was going to be okay. But inside I wasn't okay. As his father I spent my life trying to care for and protect my son and couldn't save him from DMD. If my son had cancer, he might have had a chance. But for children with DMD, there is no escape. Absolutely none.

When it was Ethan's turn, he knelt gently by Mitchell's bed and held his hand and told him how much he loved and admired him. As I left the room I turned my head and saw two young boys who just wanted to play – and my heart was pulverized. I quietly shut the door and fell to the floor and wept tears of the deepest sorrow. 

This would be the last conversation they would have in mortality.

Later I learned that Ethan made sacred promises to his little brother. Ethan told little Mitch he looked up to him and that he would never forget what he taught him. He promised his dying brother he would live a life that would honor him. They talked for 45 minutes. 

As my son was slipping away my mind and heart were wracked with self-doubt and sorrow beyond all description. A torrent of panicked questions flooded my mind ... "Have I said all that I want to say? Have I apologized for all of the times I disappointed him? Does he know how much I love him? Really, truly, does he know? How do I say goodbye to my little boy? Is my son okay?" Despite the panic and doubt in my heart, I tabled my emotions for my son and remained calm and assuring for Mitch. To Mitch I could fold mountains and put them in my pocket. But inside I was stumbling over pebbles.

I wasn't afraid of death for I know life continues after death. I know it. But I was afraid of goodbye. I was afraid of the end. The end of cuddling, of conversations, of hearing his voice, his laughter, his sense of humor, his very being as I knew it. It was all coming to an end. Although I knew goodbye was "just for now" - it hurts just the same. 

I had weeks to prepare knowing this time would come, yet despite my preparations for this loss I was trembling in agony. Intellectually and emotionally you brace for the impact of this loss - but when it happens you realize the bracing isn't to stop the impact but to keep you from breaking apart. 

I don’t know what promises Ethan made Mitch this day - but I know he will keep them. I also made promises to my son – that I would do my best to live a worthy, good life – so that I might see him again. And while I am mortal and deeply flawed, I will not stop trying. I will pick myself up when I fall and keep trying. That is my promise. I will never lose sight of my son and I will pay any price to be with him again.

As I wrote in a post earlier last year, “there is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”

I run.

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Mitch never did a chore in his life. Yes, he had duties like the rest of our children, but they were never a chore for him to do.

It is Saturday morning and I can’t help but remember how quick Mitch was to do his weekend tasks. He always did his duty with a smile on his face and gladness in his heart. He knew whether with homework or household tasks, the sooner he did what was required the sooner he could get on with life and enjoy his day. What’s more, he did his work with a happy attitude … Mitch never did a chore in his life.

I love my son. I am grateful for the little lessons he taught me. Today and every day, I will do the hard stuff first – and I will do it with a smile on my face and gladness in my heart. For little Mitch taught me a glad heart can make heavy things seem light.

 

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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.