Mitch loved shenanigans.
It was a hot summer day. Ethan was opening a present for his birthday when Mitch sneaked behind him and tried to smash a water balloon against his back. Because his arms were already weakened by DMD, Mitch struggled to lift the little water weapon above his shoulders. Lunging his body forward, Mitch hurled the balloon toward his brother with all his might and ran away giggling. I loved the sound of Mitchell’s giggle; endearing as it was contagious.
My little boy never missed an opportunity to live. I don’t mean live as in breathing – though he was very grateful to be alive. I mean to say Mitch never missed an opportunity to be in the moment … to love and laugh and drink life in the best he knew how.
Sometimes bitter ironies are the strongest teachers.
Grief is another ironic teacher. I have learned, as my friend Pat Furlong (Founder of Parent Project Muscular Dystrophy) taught me not long after Mitch passed away, that grief never really goes away. She, being no stranger to grief, told me that grief is a chronic condition: you don’t get over it, you don’t go through it … you just learn to live with it.
So, I have found grief ironic because while it has the potential to drain joy and life out of living, it has taught me to appreciate life in new and meaningful ways.
Such is the duality of grief: to be happy and sad … to be whole and broken all at once. Though I may laugh, smile and be filled with joy at any given moment, at the same time I carry the weight of grief … the weight of wanting my son back in my arms. Inside the heart of those who grief is a soul that yearns for joy and happiness, yet sorrows in what is lost. It is to be okay, but not okay … and learning to accept that’s okay.
That is learning how to live.
This Memorial Day weekend, I will honor those who fought and died so others may live. At the same time, I will also reverently honor my little boy who fought to stay alive and died ... and in so doing taught me how to live.
A few weeks ago I re-posted a story entitled “Please, No / Please Know.” In it, I described our struggle of the soul to come to terms with the passing of our son.
A thoughtful and kind follower of Mitchell’s Journey asked: “Have you ever received an answer? Do you “know”?
This was my response:
“What a fair question. Yes, I have received an answer. Many, in fact. I "know." There are still moments of darkness and deep sorrow. Yet, when I look heavenward ... when I connect the tender mercies I've seen, they display like heavenly constellations that point the way ... just enough to light the path before my feet. I know it like a compass knows the north and south poles. I cannot see it, but I can feel its influence. Still, my journey through the wilderness of grief requires that I trust that compass and follow where it leads. I cannot see that far ahead of me. I must still walk by faith. Yet, I know. I absolutely know.”
I know.
---------------------------------------------------
This is the re-post of that article.
http://tinyurl.com/lf5444p
A summer storm had just passed when we decided to take our kids park hopping. The air was crisp and clean, the grass still soft with rain. The magic of weather made the earth feel new again.
Mitch and my other boys were excited to play with some Styrofoam airplanes that I picked up from a local hobby shop. When thrown, these planes would circle back to you like a boomerang. They were fun to fly.
Fascinated, Mitch asked in his soft, tender tone, “Dad, how does that work?” I shared what little I knew about aerodynamics and Bernoulli's principle and tried to distill it into something a 9 year old might understand. “Mitch,” I said, “When you throw that plane you create pressure and force – which creates lift. This little airplane is designed to lift when it meets force and pressure.” Mitch tilted his head as though to ponder my words, then finally a look of understanding and insight came across his face.
At the same time in his life, I knew he was grappling with why he was getting weaker while many of his peers were getting stronger. So I took a moment to apply that same principle of lift to my boy. I said, “Son, I think our souls are much like this airplane. Our souls are designed to lift when it meets pressure – you know, when it meets hard things. You, little Mitch, are meant to fly.”
With that, I kissed his forehead like I so often did, and he went about his childhood adventure. With each determined throw I could see Mitch studying the flight path of this little airplane. Every time it took flight, it seemed as though he was internalizing my words and how they applied to him. I had spoken enough to Mitch about the nature of the human soul and the purpose of life that he knew what I was talking about. There was an intensity to Mitch that was unique that day. An intensity of study I won’t likely forget.
Among the many tragedies of my son’s passing was the fact he loved life so much. He loved every minute of it and there wasn't a moment he wasted. For little Mitch, each day was an act of deliberate living. Even when his body was shutting down, he would awake only to realize with great disappointment he lost hours of his life to sleep. This little boy clung to life like a drowning man to a life preserver deep at sea.
I have known no greater pain than the loss of my son. The force and pressure of grief is that of a hurricane seen only on Jupiter. Yet, I can’t help but wonder if the tempest of my own grief and sorrow are a form of spiritual force and pressure, creating lift to my weary soul. Though I would rather not be about this journey, I have no choice in the matter. I can choose to steer upward or spiral to the ground … the choice is entirely mine, I have found.
I have come to realize a relationship between pain and progress. Our souls are meant to struggle – for in that heavenly pressure creates lift. Though agonizing now, one day we’ll look back and be grateful for it.
I can almost hear a whisper from our Father, “Don’t be discouraged, my child – for your soul was meant to fly. And that cannot happen without pressure or standing idly by.”
It is interesting how grief is made easier when you set aside your own sorrows to help another. Somehow, some way, it hurts a little less. Oh, don't get me wrong; grief is the heaviest burden I know ... it wrenches soul, springs the deepest of tears and makes for the blackest of nights - but I have found service is a candle in all that darkness. Though I weep for Mitch, my heart is full to think that others may be helped a little. Though grief isn't gone, it is a little easier to bear.
We're learning as we go. Though, early on, just after my son's passing, I had high hopes to do more and raise money for this cause faster. What I had hoped to happen didn't. I think my Father is teaching me something ... and I'm trying to listen. In the meantime, we won't stop trying to find our path and help others along the way.
Natalie's heart was so full this morning. She cries quietly every day for Mitch - so I was glad to see her find joy in serving others. Seen also in this photo [on the right] are two of Natalie's dearest friends who have been an integral part of our charity run. We owe them, and our other committee members, a debt of gratitude.
We're excited to make our first announcement that we will be supporting MDA of Utah's Summer Camp this year. Because of your generous donations and involvement with Miles for Mitchell, we were able to donate $2,000 to MDA of Utah this year so young children can go swimming and fishing (two of Mitchie's favorite things to do).
While it may not sound like much, these boys don't have much time to be children. Before they know it, these young boys (and some girls) will find themselves unable to walk, use their arms or neck and will find their world of possibilities rapidly shrinking.
While others organizations are racing to find a cure (which we fully support), we are racing to give these children a life before it gets taken away.
We hope that the children who attend this year's activity will have warm memories to lift their hearts when life gets difficult for them.
We'll be announcing more of what we're doing this year with the proceeds of the run to help Parent Project MD and other DMD families in the coming weeks.
Because your involvement has empowered us to help others, you have helped in our own grieving process - because as we serve, we heal. So, from the bottom of my heart, thank you. Thank you for loving. Thank you for caring.
Miles for Mitchell on Instagram
instagram.com/milesformitchell/
Mitchell's Journey on Instagram
instagram.com/mitchells_journey/