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.
Last December, upon hearing of Mitchell's failing heart a good friend of mine, Russ Dixon, arranged for our boy to have a special visitor ... a Spartan from one of his favorite video games. It was an amazing Christmas gift for our son. Mitchell developed a deep attachment to the Halo characters because he felt those warriors were noble and fought for freedom and peace.
This visit happened almost a year ago this Saturday. Mitch had no idea who was coming over and was so surprised to see this warrior come to spend time with him. Mitchell was just beginning to show signs of sickness that were associated with heart failure. He had a dull headache that day and within a few more days he was no longer feeling well enough to do much of anything. By Christmas morning he felt awful and spent much of his time lying down. We were so new to everything associated with heart failure that what we mistook what was happening for a common cold. We didn’t realize what little time we had. This was the beginning of the end.
This Spartan and my son played Halo together for about 40 minutes and it was a joy to watch because Mitch was a great gamer. When they played a few 1 on 1 matches I told our visitor to not give Mitch a break by playing easy and that he should play his best. So he hesitatingly played his best and he found that Mitch was a formidable opponent. Whenever I played games with Mitch he always made sure we were on the same team. I always took great comfort being by his side because he protected me and if we ever separated I became very antsy. Whenever I fell in any game, which I did often, Mitch would find me and revive me. My little boy took so much comfort in being near me … if he only knew what comfort I took being near him. I hope when I fall in life, which is often, that Mitch will somehow find me again and help me up.
As this Halo visitor left our home he gave Mitch a few miniature Halo figures. They were each wrapped separately and, like a fortune cookie, you didn't know what you had until you opened it. One of them happened to be the very character that came to see him – and Mitch thought that was pretty neat. We are forever grateful for this special gift to our son because it made him feel special and loved and it sparked his imagination.
This surprise visit was an act of love by my friend who put this in motion. It was also a labor of love by this grown man dressed as a Spartan, who a stranger to us, and volunteered his time to lift the heart of our sick son. I am sure he had a million-and-one other things to do. Christmas was around the corner and this man had his own family to love and care for – yet he set aside is personal interests to bless our boy. And for that, I am deeply touched.
It’s tempting to think heroes have perfect teeth, deep voices and muscle-laden bodies lathered in suntan oil … but those are not the marks of real heroes. The heroes that entertain us in books, video games and movies are a mirage dressed in tinsel and pixie dust. Real heroes are ordinary people being extraordinary … like this man who, despite his costume, was more a hero to me than the icon he represented. Heroes like my friend Russ, who saw a family who was hurting and made a few phone calls to put something in motion that would be a blessing to our son. Heroes like Pat Furlong with PPMD, who lost two boys to DMD, yet fights every single day to find a cure. Many of you are heroes to us because you reached out to Mitch and offered love and support.
And then there’s Mitch; he was then, and remains today, my hero. My son is not my hero because he died, but because of the way he lived. He was honest, compassionate, and obedient and had great faith in God. And when he faced the reality of his own death, he responded with dignity beyond his years, bravery worthy of the noblest warrior, and he cared more about his mother than himself. That he could set aside his own fears and hand peace of mind to his mother brings me to my knees. Our little boy, in all his brokenness, was as strong as any Spartan that ever lived or will yet live.
My little hero, broken beyond repair, showed me how to live well and die with courage. I wish I could have done in life for my son what he did so often for me in video games … that I could find him and revive him and keep him safe. I grieve deeply that I could not. And when the weight of such grief feels overwhelming to me, I am reminded of a sacred conversation I had with Mitch … where I cried tears of a broken father and told my son how proud I was of the young man he had become. I told him that while I have been scrambling to find a way to save him … in reality he was the one saving me.
Perhaps, after all, my son continues to find me ... and with eyes unaware, he revives me.
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.
Natalie was on a trip to New York City with some of her girlfriends. I was so glad to see her take a break from all that weighed heavy and enjoy time away with dear friends. For me, being home with my kids was also a treasured opportunity to connect in new ways and spend concentrated time with them.
The day Natalie came home my kids wanted to write her welcome home notes. We sat in my conference room with a box full of markers, crayons, and pencils and got to work. She had only been gone about 4 days but each of us missed her as if she had been gone 40. And in her absence each of us recognized, in our own way, what a tremendous blessing she was to us individually and as a family; we loved our mom and missed her so.
I remember helping my kids draw and spell and at one point I looked over to see Mitch, who had sat on my table and with tender hands wrote what was on his mind and heart. In his cute handwriting he sketched “I love love love love …. you.” Were you to zoom into this image and look closely, you would see what I’m referring to. I was so moved by what Mitch wrote. He felt that one word “love” wasn't enough to describe how he felt about her. It was such a simple note but a profound gesture of love and affection from a little boy to his mommy.
A dear friend of mine, whose wife also went with Natalie, picked them up from the airport and brought her home. We each came to greet Natalie on the driveway and in the doorway and suddenly our family, which felt incomplete without her, was whole again. With arms stretched we said, “Welcome home.”
When Mitch was diagnosed we sold our home and built a new one with the hope our son could use a wheelchair more easily, when the time came. Between the times we sold our home and moved into our new one, we lived in an apartment for about 2 years and most of what we owned was in storage. I wrote the following in my journal: “Living in an apartment has reminded us of what’s truly important – although I don’t know that we ever lost sight of that. Materialism is a state of mind – not a condition of possessions. We own our stuff - it doesn't own us. And while we have a lot of crap in storage, we aren't itching for it – however, admittedly, it will be like Christmas in the summer when we unpack. Yet, if a tornado or a burglar came sweeping by and it all vanished in a moment – it is only stuff. What is most important is the living, breathing bodies and souls that live in our dwelling.”
My feelings have not changed since I wrote that entry 7 years ago. Home isn't a shelter for things or a place to hoard away the treasures of earth. It is more than a place to eat and sleep. To me, home is a most sacred place – a place to forge the most important relationships we will ever have.
When I look upon this photo and see my son, whose love for family was overflowing, I can’t help but feel his loss. As my home felt empty without my wife, it feels profoundly empty without my son. I don’t limp about or spend my days licking my wounds or feeling sorry for myself – but I do long for him. I do miss him. And I do cry for him.
Welcome home. That is what I want to say to my son, but I cannot. And in my heart and mind I write letters to him in the same way he wrote his mom … with the word “love” repeating to infinity. There aren't words in the human language that can express my love for my son and how I yearn for him to be home, with me.
But then again, this isn't really home. Our real home is over there … in that place beyond the hills. And one day I will see my son and he will say to me, “Hi Dad, welcome home.” And I will weep.