Summer, at least in my part of the world, is coming to an end. I can feel the whisper of winter on the back of my neck and the sweet smell of fall is almost in the air. While I sit on the verge of a change in seasons, I can’t help but remember a warmer time - a time before hell – when I had my son with me and we went on an adventure.
We set camp in the west desert, far enough from city lights that you could see deep into the starry night. The heavens were almost close enough to touch. I remember talking to Mitch after we were tucked in for the night and looking through the net of the tent into the heavens, I asked, “Mitch, don’t you wish we could scoop up those beautiful stars and put them in our pockets like little glowing rocks?” Mitch smiled and said, “That way, when it is dark we could always see.” Mitch then burrowed into me and closed his eyes. He was the best at cuddling. I miss that.
Mitchell’s love of atmosphere and moods was one of the reasons he loved sunsets so much. On this evening the atmosphere was particularly beautiful because of some deep contrasts in color and light because of a passing storm. In every direction, save where the sun was setting, we found ourselves surrounded by towering clouds that stood like floating giants. They cast deep shadows beneath them and the contrast of light and color was thrilling to see. Each tower was also flashing with sheet lightening. In almost every direction these beautiful clouds stretched far into the horizon.
I remember wanting to take photos of the amazing sky and thought to myself, “I’ll take photos of the storm in a few minutes.” Before I knew it, it was dark and the beautiful sky that entranced us was forever gone. I regretted not taking that photo in the moment. Lesson learned.
With Mitch and my other sons cuddled next to me, we drifted to sleep. The next morning I awoke in tremendous pain - it felt like an elephant had stepped on my chest and broke my ribs. I had difficulty breathing and wondered if I had been stung by a scorpion (we caught one later that morning) or something else. As we broke our tent down I discovered I was sleeping on a jagged rock – which explained my sore ribs. I realized at that moment I should pay closer attention to where I set our tent. Another lesson learned.
After we arrived home, covered in desert dust and dry skin, I remember finding a pocket full of rocks in Mitchell’s pants. He had quietly collected little stones form the desert as souvenirs. I still have those little rocks in a special place. When I look at them I can’t help but wonder what he saw in each of them. I will forever wonder.
When I think back on moments like these, camping with my kids, I have the fondest of memories. Not all of them were wrapped in majestic sunsets and perfect moments cushioned in comfort. In fact, many of our camping trips were rather hard. We have camped in the bitter cold, high in the winter mountains; we've weathered torrential rainstorms, worried we would be swept away by a river of rain; and we have awoken to inches of new snow and many other surprises. Each was an adventure punctuated by difficulty and discomfort … yet is each a memory I am so grateful to have.
I have noticed something interesting with Mitch and my other children. Often they would draw pictures of memories they had; and with their little hands they would sketch out our campsites and recreate the most difficult moments while camping … moments that were less fun while in the moment.
I wondered why they would sketch the struggle and I asked them to tell me about their drawings. Each would say in their own way, “This was my favorite campout.” They would then explain what they loved about it. I was always surprised. These little kids with a pocket full of rocks appreciated the experience, however difficult, more than I gave them credit. I couldn't help but wonder if they were teaching me something important – that in the struggle is also the beauty.
Today is the first World Duchenne Awareness Day, sponsored by PPMD.
Duchenne Muscular Dystrophy (DMD) is a muscle wasting disease - muscle tissue is unable to repair itself and children get weaker and weaker until they die. They don't survive this disease - not one escapes it. Not a single one.
Our son, Mitchell, passed away from heart failure because DMD destroyed that vital muscle much earlier than anticipated.
Though the root cause is different, which requires its own research and search for a cure, the surface DMD isn't too dissimilar from ALS - inasmuch as those who have it lose their ability to walk, use their arms, swallow, breathe and eventually their hearts give out. DMD needs as much attention as ALS - and I hope to help PPMD elevate awareness of DMD and its catastrophic outcomes.
I have a particular love for this organization for many reasons – one of which, they tried valiantly to save my little boy. Secondly, they fight to save every child afflicted with Duchenne Muscular Dystrophy (DMD). Thirdly, this organization is filled with love, compassion, drive and experience. Fourthly, they are getting it done – but they can’t do it alone.
In memory of my son, and other sons affected by DMD, please visit:
http://www.parentprojectmd.org/site/PageServer?pagename=Connect_wdad
I wonder what would happen if everyone had a chance to read the warning label before we made life decisions.
The day of my wedding my warning label might have read: “Congratulations. You are young and in love. Enjoy the calm before the storm, for the years ahead won’t always be kind to you. In fact, they will be brutal. Yes, you’ll experience triumphs but you’ll also come to know the darkest tragedies. Though you won’t mean to, you will make choices that hurt each other and yourselves. You will fail at a business before you succeed and while you've failed you’ll find yourselves searching the couch to find enough quarters to pay for diapers. You will struggle and you will be afraid. At some point, you’ll wonder if you're capable of anything at all. You will come to know the darkest storm clouds and your wilderness will be vast and deep. Your heart strings will be wrenched and pulled until you can no longer stand. You will have a child that will die and you will fall to your knees and weep until your knees are broken and worn. Pain and struggle will be your teacher. And that’s just the beginning.”
Yet, next to the warning, I would have also read a benefits label: “Take heart. Though you may feel alone, you will not be, not ever. Your Father will be with you – for He is your tutor and all that will happen will be for your good. You will have a family and come to know a love you scarcely comprehend on your own. That love you will come to feel for your children will be but a speck compared to the love your Father has for you. At one point you’ll finally understand that to know the love of family is to know a little more about God, for we are all His children. Your tears of joy and sorrow will become a lens to your eyes and you will begin to see things you didn't before. Your heart will grow and feel more love and joy than you can imagine. Like a heavenly constellation, you will begin to see the tender mercies poured out upon your lives by a loving Father - however, you will only see those stars in the pitch of night. You will make connections between them and eventually see the hand of God through everything. And that’s just the beginning.”
Tomorrow will mark our 17th anniversary. On that cool September day I married my wife, I had no idea the journey that lay before our feet. I’ll never forget crying as the officiator spoke, not out of sorrow but out of a deep sense something was being put in motion – more than I knew. All I knew was that I loved my wife and it was good. I knew I would be imperfect, but I would do my best. My love for this good woman has only grown stronger and deeper. I consider myself blessed beyond measure.
Today, as I look back upon the 17 years we've had together, knowing the depths of horror and the heights of happiness – I wouldn't trade my life for anything. Between the hurt and the happiness I have come to know a different kind of love – and I am grateful. I would do it all over again. To infinity and beyond, I would do it all over again.
And to think that today I can no more read the warning and benefits labels for tomorrow.
Today is just the beginning.
This was one of Mitchell’s last Nerf wars. Toward the end of this family battle my sweet son was getting lightheaded and laid on his back so he could play and rest at the same time. Mitch took his last shot – simultaneously out of ammo and energy. Mitch, finding himself out of ammo softly threw his gun at his sister, not to hurt her, but to demonstrate he was fighting to the very end and that was his final blow. He always did that and it was so cute and endearing. I just adored my son.
I remember seeing the PICC line in his arm that pumped medicine directly into his weary heart. Without it, he would have died much sooner. My heart sank as I saw the point of entry surrounded by bruises and it was tender to the touch. He didn't mind the discomfort and inconvenience of the PICC line, he was just glad to be alive. Though it was fun to have play battles with our son, I was quietly reminded he was fighting a very real battle with DMD and he was losing. That was a battle he would not win.
Little Mitch loved to have Nerf battles because he loved to strategize. He was a mastermind. I remember hearing him as a very young boy critique his older brother, Ethan, while playing a particular video game. Mitch said, “Ethan, that’s not a wise decision.” He then began to tell his brother why his strategy was in error and recommended a different way. I was couldn't believe his maturity of thought and insight. This young boy, was then, and remains today, a much older soul than mine. Yes, he was still 10 and did all the things that 10 year-olds do – but, at the same time, he was more than 10, if you catch my meaning.
He didn't realize it at the time, because he was humble and loving, but Mitch was a natural leader. To him, leading wasn't about ordering people around, it was about building teamwork, and unity and helping others learn to lead. I have so much to learn from my little broken boy.
The way Mitch conducted himself reminded me of the wise words of Patrick Leoncioni, who wrote of teamwork, “Not finance. Not strategy. Not technology. It is teamwork that remains the ultimate competitive advantage, both because it is so powerful and so rare.” Mitch knew how to create and keep a team. As his father, I found great satisfaction being part of team Mitch. My grief has been deepened because I feel like I lost a key member of my team.
If there is ever a team that matters, it is family. That is the one team, forged out of struggle and made stronger by love, that should fight to stay together to the very end. My family is everything to me.
Grief is a battle unlike any I have ever known. It is difficult enough to grapple with grief by itself and is made complicated by those who dismiss the struggle or think it’s time to move on. Because of that, I have learned not to need or seek others acceptance of my own grief journey. Just today I had a phone conversation with someone I have known my entire life. I mentioned that my family is still in a state of crisis. She seemed surprised – almost as though she thought the crisis should have wound down at the death of my son. Those thoughts are common to those who stand comfortably on the outside looking in. To the contrary, when my son died, the crisis was just beginning. And what a crisis it has been.
Though I will continue to write about our journey through grief, I will also be chronicling our healing, too. One day I may not write of grief so much. But I am not done grieving and as long as I am moved to say things, I will say them unapologetically and as it happens. I have discovered in my own journey that grief and healing can co-exist, and I will share our experience with both.
I wish the battle of grief was like my son’s play battles. That we could struggle for a moment, then set it aside and go back to normal. But the death of a child obliterates normal and ushers in a battle with grief that is a fight to the very end. A fight to keep your soul from growing numb, or your heart from falling apart or simply to keep from getting lost in the wilderness of sorrow. But, like my son, I will fight on. To the very end.