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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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I knew my wife was up to something a few months ago when she was busy at work on her laptop and periodically asked me to help her find some specific photos. She had a certain energy about her but kept everything secret. Then a few weeks ago she had her parents and Aunt Sonya come over to our home to do something special. I am generally aware when something is up – but this time I didn’t see it coming.

We had dinner as a family and enjoyed each other’s company for a while and then we went downstairs for the big reveal. To our surprise Natalie had made custom Christmas tree decorations in honor of our son. On our table was an array of UNO cards, Nerf guns, dragons, stuffed animal huskies and Angry Birds, Legos and more. Each of us also received a block with photos of us and Mitch. It was the most unexpected and thoughtful surprise. 

I was overwhelmed by emotion and quietly stepped out of the room and went down the hall … the same hall I stepped into, slid my back down the wall and wept like a child when Mitch told me “Well, at least I’m alive.” I sat in the darkness a moment and wept like I did when I knew I couldn’t save my son. I tried to dry up as quickly as I could and then went back in the room to participate. 

As I walked back in the room everyone was busy putting decorations on the tree and I was so grateful for family. As we were wrapping things up, Natalie showed us a star she made with Mitchell’s face in the center. 

Every time I see this tree I think of my son; and when I do, I do not have sad thoughts but thoughts of love and appreciation … thoughts of comfort. I am also reminded of what it means to be innocent and good. Mitch gave that to me, as did my other children – and for that, I am grateful.

I know there are some who bemoan the commercialization of Christmas (or any holiday for that matter) worried that people are obscuring its original meaning with all manner of distractions; and I understand the importance of remembering the origins of what we do and why we do it. But I also believe there is room for symbols, customs and traditions that remind us to be good. And if there are any such things, I seek after them. 

This humble tree adorned with things my little boy loved serves as a reminder that family is a gift I cherish – a gift I will never again take for granted.

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One year ago, almost to the day, this was my family. 

To my left was sweet Mitch unaware he had about 2 months to live. He wasn't feeling well during the holidays and we thought he just had a cold. We didn't realize his heart, weary and tired from the destructive effects of DMD, was beginning to fail. We didn't realize this was it … that the time had come. 

We sat as a family to break bread a few days before Christmas and I was so grateful to be with everyone most dear to me. My in-laws were with us and in a few hours we would share some Christmas gifts with each other. But for Natalie and me, no gift was equal to the time we spent together.

As a child I remember being so excited about receiving presents. During the weeks leading up to each Christmas I was always on the hunt for that secret stash of presents that would appear on Christmas morning from my mother and that benevolent icon dressed in red and white. As a young child, getting stuff was so much fun. But as each year passed, so my appetite for getting grew fainter. As I grew older I discovered that giving was far more rewarding that getting. Today I am scarcely interested in getting … I only want to give. My children have since gained an appetite for giving – which, for me, is a gift within a gift.

There I sat at our table, surrounded by everyone I love, and I began to think back on moments in my life when I was with my family but distracted by the million-and-one things that tugged at my mind and attention. There were bills to pay, three different payrolls to meet, projects to complete, a thousand personal and professional commitments, taxes, that leaking faucet in the basement, the ice on my driveway … the list is ever present and always beckoning for my attention. Each were important, some more than others, but none of that was as important as these souls seated at my table. 

And though I must work so I can feed my family, I live so I can love them. 

At one point I grabbed my iPhone and hastily took a panoramic photo because I didn't want to forget this moment. In life, I would rather take a bad photo than no photo – and in this case I’m so glad I did. I would have forgotten so much about this day – in fact I would have forgotten that I had forgotten. Now that I have a photo of this moment my memory is vivid, my heart is full and love overflowing. 

So at our table this day I resolved to re-evaluate my life and priorities and make sure that I maintain balance and appropriate focus on my core values. And with Christmas around the corner I couldn't help but think of the gifts we give and take – that the things we wrap do not Christmas make. Just as I had made that commitment to myself the thought occurred to me that there is no present like being present. Being present … I mean totally and completely present is the greatest gift we can give each other. I have found when I’m present I can truly listen, empathize, learn and love. But when I’m distracted or casually engaged, I cannot do anything well. In fact, when I’m less-than-present I can hurt those I love by appearing disinterested or uncaring – when in reality, they are all I really care about.

Later this night little Mitch asked me in his sweet voice, “Dad, will you tuck me in?” My heart leapt at the chance. And today, when I walk into his room and see his empty bed, my heart yearns to tuck him in once more … to run my fingers through his hair, to see his soft smile and hear his laughter, to listen to what’s on his mind, to give him the gift of being present. I wasn't always good at it – in fact I probably failed more than I succeeded. But I tried. I really, really tried.

Yet, when I look back and remember the times I was truly present … those times were a gift to Mitch and a gift to me. And now, because of time well spent, I have the gift of memory.

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I was looking at an old Christmas card I made in 2005 which included a mini audio CD of my kids. Mitch was only 3 years old and had been diagnosed with DMD earlier that year. In the months leading up to this little interview I spent many tear-filled nights under the dim light of our kitchen table reading everything I could about this fatal disease. From the moment of his diagnosis time became more precious than money or possessions and I did everything I could to capture as much of life as possible. Until the moment of his diagnosis I had always taken as many photos of [all] my kids because I knew they would only be little once – but suddenly there was a certain urgency I didn't have before.

I had all but forgotten about this little interview with Mitch (and my other children) and upon finding it my heart exploded. 

I just threw a couple of visuals to go along with the audio. The photos herein were taken the same day as the interview. 

This is short, but it’s worth listening to: https://vimeo.com/81344738

This holiday season I won’t forget the gifts that matter most shouldn't be wrapped in paper, but wrapped in love. I am forever grateful for my family.