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.
A few years ago our extended family had a reunion in Mexico. Our generous step-father and grandfather sponsored the trip as a means to spend time together and create memories.
On this occasion, we were at the Cenote in Chichén Itzá, Mexico. Imagine a giant underground pool of water several hundred feet beneath the surface and surrounded in the hardest stone. Were you to look upward you would see the sky, jungle trees and vines draping downward to the water. The water below was exceedingly deep and dark, but it was fresh water and a nice break from the intense heat.
We helped Mitch descend a stair path until we reached a stone platform about 10 feet from the waterline. Natalie, wanting Mitch to have a life full of experience asked if he wanted to jump into the water, she said, “I’ll go with you.” Mitch gladly accepted the invitation. Mitch was afraid of nothing, save dying. I think he only feared death, not because of what would happen over there, but because he didn't want to miss out on everything happening here. Mitch loved life. He often commented how glad he was to be alive. And to think how oft I have lived and never really been alive. Because of my sweet son, I am changed.
I'll never forget the look on Mitchie’s face after he came out of the water. He had the biggest smile because he conquered another one of life’s challenges. Fellow swimmers helped Mitch and Natalie climb the rope ladder so he could jump in once more. Mitch loved this experience. He was so happy to have dove into the water with his mom and he talked about it for a long time.
I love this image because it is symbolic of how my wife and son lived. Mitch loved life and was always up for an adventure. My dear wife postponed any convenience, if necessary, to teach our children discipline, a sound work ethic and to enjoy everything life has to offer. This image exactly depicts my noble, loving wife seeking ways to help our disabled son drink life in; always by his side, always holding his hand.
The night Mitch passed away I remember my wife holding his hand in a similar manner – it was firm and loving, tender and assuring. Only that time she couldn't jump with Mitch. She stood beside our little boy on the edge of a different dark water … a place wherein one cannot see, at least with mortal eyes. Natalie loved our little boy and let him know he would be okay – for soon he would jump to that other place.
It wasn't but a few days earlier Natalie wept at the side of his bed, thinking Mitch was asleep when he awoke and said, “It’s okay Mommy.” I will forever be in awe of the strength and nobility of this little boy … who set aside his own fears to comfort his mother. I am quite certain that was a jump he did not want to make – but he loved his mommy enough to help her feel better.
Mitch lives. He doesn't live because I write of him and that his memory is in the hearts and minds of people. He is not an idea or a memory. He lives as an actual being, a person of consciousness: a child of God who lives on – as will all of us after we leave this mortal state. I know this. I only wish such knowledge took the pain of separation and loss away – but it doesn't. It gives context to loss and sorrow, but it doesn't give us immunity from pain. I miss my 10-year-old son. I want him back and I cannot have him and my heart is greatly pained therewith.
Yet, to look upon this image gives me fresh courage to live a full life and drink the moments in the best I can. I want to live a life like Mitch lived – fearlessly facing life’s adventures and doing it with those I love. If my little son could face all manner of unknowns with such bravery, so can I. And then there’s my sweet wife … a woman I will always love and honor because of the way she lives and loves.
I am grateful for these two beautiful examples in my life: my wife for endlessly severing and loving and my son for his bravery and selflessness – which selflessness at the end of his life was a bravery of a much nobler sort.