There was a point where Mitch was on the razors edge of ability and disability. This was the point in his life he began to witness his physical strength slip through his fingers like sand on a windy day. No matter how much he tried to keep his strength, it simply would not stay.
Because he seemed vaguely normal, it was easy for others to dismiss his physical needs. Mitch often grappled with whether or not he should drive his scooter or try to walk. For a while he asked his mom or myself to carry him so he could go distances, then be set down to walk on his own and not stand out from the crowd. He wanted to feel normal as long as possible. Natalie, his tender mother, spared no inconvenience to help him feel normal and empower him to be all that he could be.
On this day I remember hearing Mitch ask in his soft voice, “Mom, will you carry me?” Natalie whispered, “Oh Mitchie, as long as I have you, I’ll carry you.” I’ll never forget how Mitch smiled as he wrapped his arms around his mom and how she carried him down a sidewalk. Mitchie smiled at me as if to say, “Dad, I’m the lucky one.”
I cannot remember a single time Natalie ever complained about caring for Mitch. That’s what love does, you see: it turns burdens into blessings. Sure there were days of exhaustion and discouragement, even moments of grief and fear. But in the end, caring for our little boy meant we still had him - and having him was worth the weight of everything.
Sometimes when I look at all that weighs heavy on my shoulders I can be tempted to think my burdens are my enemy … after all, they hurt and they’re heavy. But when I quiet my heart and try to look at life through heaven’s lens, I know whatever burdens I encounter are not only tender teachers … they are my friends.
Still, when I examine my life honestly, I wonder why my Father even puts up with me – a soul so rebellious and proud as mine. The child in my heart wonders if I’m more work for Him than is worth it. Then, like a whisper, I feel a nudge back to this moment with my wife and son. I remember how much I love my child, no matter how broken he might have seemed; my love for him is infinite and stretches to eternity.
If I would carry my son gladly … patiently … might my Father do the same to me? Something tells me we’re all being carried in ways we cannot yet see.
Perhaps, when all is said and done, we’ll look back on our lives ... hardships and all ... and say, just like little Mitch, “I’m the lucky one.”
Without realizing it, my sweet wife often put her hand on Mitchell’s chest as if to somehow read, like fingers tumbling over braille, the fatal secrets his body held. We were waiting to learn the news about Mitchell’s heart and expecting to hear all was well and that the therapies put in place earlier that spring were working.
A few minutes after this photo Mitchell’s mild-mannered cardiologist entered the examination room and invited our daughter to take Mitch on a stroll down the hall so we could have a conversation. He would then tell us he was gravely concerned Mitch was at risk of sudden death because his heart function was dangerously low. We immediately petitioned the medical board for Mitch to qualify for a heart transplant. A few weeks later he would be denied because it was thought his diagnosis of DMD was a contraindication to transplant.
It was Halloween that night and Mitch was excited to trick-or-treat. He would only visit a few close neighbors before he became too weary to carry on. Mitch was always careful to ration his candy and never ate it in excess. In my estimation, restraint is a hallmark of maturity – and Mitch had a great deal of restraint and self-discipline. In truth, Mitch was most excited to go home and give candy to kids who came to our door – for he much preferred giving than receiving. To me, that was a beautifully quite measure of this young boy’s heart – for he would rather give than receive.
When I think of my dear wife and son, both with broken hearts – I change a little on the inside. I care less about things of the world and outward appearances and I ponder deeply on matters of the heart. For matters of the heart are also matters of the soul. In the end, those are the only things that matter.
A few months later, as Mitch began to slip into the abyss while at the hospital, then home on hospice; Tyson Breckenridge an old High School friend, collaborated with another old friend, Tyler Streeter, who has become a talented artist. Together they selected a photograph of my son and Tyler began the labor of love by paining my son’s likeness. Our family was so wrapped up in the calamity of our son’s failing heart and then his death we didn't know they were performing such a kind gesture of love and service. Then, one day, a not long after my son had passed I received a package in the mail with a handwritten letter. Tyler wrote, “It is so ironic to me that a young boy with a malfunctioning heart could fill so many other hearts with so much love.” He continued to describe how painting my son was an emotional experience for him and that he cried many times while painting my boy.
I wept when I read his letter. I even wept today when I read his words again. This gift from these two great men was more than an original painting … it was a gift from the heart and soul. I will forever be indebted to them for their kindness. The original paining, so artfully crafted by Tyler and lovingly orchestrated by Tyson, now hangs in our home on a very special wall, in a very special room. Tyler entitled the painting, “The Gift.” You can see a beautiful time-lapse video of the painting here: www.youtube.com/watch?v=Nxsptlwyk8E
A title aptly given … for if none else, Mitchell was at least a gift to me. As a young child I never considered that a gift might hurt. It never entered my mind that a hardship as heavy as losing my son might break me in places I didn't know existed, yet still be a gift. Who would have thought such strange things? Indeed, heavens ways are not our ways … and as the heavens are higher than the earth, so are God’s ways higher than our ways … His thoughts, than our thoughts.
Heaven’s gifts aren't always easy to see; they hide in plain sight or obscured by our vanity. What’s more, our Father’s gifts aren't always comfortable or easy – sometimes they hurt or bring us to our knees. That’s the gift! That’s what I've learned, you see: sometimes heaven is only as far away as our knees. A gift my son and broken heart would painfully teach me.
Every-so-often I drive by the mortuary and am reminded of the moment I saw little Mitch for the first time after he passed away. When we first entered the room we saw him lying on a table, lifeless and cold on the far end of a dimly lit room. The scene was something from a nightmare I was afraid to entertain, even in my mind. I struggled to find my breath as I swallowed the lump-turned-basketball in my throat. I stayed back so Natalie could have her time with Mitch – for I knew a mother’s love was sacred and different from mine.
When it was my turn to be with Mitch my heart tumbled into a deep abyss and it seemed for a moment my soul was certain to drown in the darkest waters. I wished so badly to wake my son that I might hold him and tell him I loved him – but he was gone. Tears streamed down my neck this day, and for many months after. I had just entered a phase of grief where I wept every single day for almost 2 years. I didn't cry. I wept.
So when I drive by that mortuary or simply reflect upon my own experience with loss I am reminded of the fragility of life. Not that we die – for I have seen plenty of death in my life and I don’t need to be reminded that life is perishable. Rather, I think about how easy it is to die a little on the inside, long before our bodies perish. We die from addiction and distraction, grief and anger, and a myriad of other things that would rob us; stuff that will take life away from life.
I don’t post on Mitchell’s Journey because I’m stuck in grief or that I fixate on death and sorrow. I am just trying to examine my life and discover ways to become truly alive.
I wish I could say I lived a life of no regret – but I haven’t. I don’t think it’s possible to live such a life because we are human and flawed. In fact, I am wary of the man or woman who says they lived a life of no regrets because such a tale is born of fiction and self-deception.
Regret is an unavoidable human condition. It is the wanting for a different outcome and the pain we cannot make it so. Regret is a measure of grief. It is part of grief. Regret is part of being human. Yet, I don’t believe, being human, the purpose of life is to cling to regret, guilt or self-loathing. Life is hard enough and I have come to believe it is well enough to do your best and forget the rest.
Do I wish I would have been different when Mitch was with me? Absolutely. Do I have regrets? I have many. But I am learning to forge those regrets in the fiery furnace of sorrow and build a new resolve that is sharper and stronger than I have ever known.
Each time I meditate and write about grief or an aspect of my son’s life and death, I am learning to trade regret for resolve.
One day, when I look back from that place beyond the hills, I know I will be glad I lived the life I lived. Not because I didn't make mistakes, but because I learned to turn regret into resolve. A resolve that is teaching me how to truly live. A resolve that is leading me home.
On those days I am especially weary in grief, stumbling over pebbles and struggling to breathe … I can hear a loving whisper, “Rise my son, for your time is not yet done. You aren't learning how to walk, but rather how to run.”
Remember the story I posted 2 weeks ago entitled MEATLOAF? Well, I just stumbled across this photo of my weary son savoring his first bite, then throwing his hand on top of my arm saying, “Dad, I just love meatloaf.” He wasn't eating much those days and this meal is what got him out of bed and offered much-needed nourishment. Nourishment that gave us more time.
That inspired act of goodness, that specific meal, offered by a woman who had no knowledge Mitch was sick and dying, is a tender mercy. An evidence of God’s love. I had no idea at the moment of this photo, the strong impressions she would receive that would lead to this very meal and how much it would mean to little Mitch. All I saw, from my limited and mortal perspective, was coincidence … even a little providence … but I had no knowledge of things as they truly were. I just knew was Mitch was grateful, and that made me happy.
It would take my wife and I almost 2 years to learn about the other side of this particular blessing. Learning of this experience has humbled me and I can't help but wonder how often I look at the proverbial table of my life and be tempted to think all that is before me ordinary. This experience reminds me how limited my sight is.
My eyes fill with tears of gratitude to know I have a Father (that WE have a Father) who cares enough about our lives to get involved in the little, seemingly ordinary things. I will spend the rest of my life thanking my Father for blessing my son this day, and every day. I am guilty of a lot of things – but I hope I am never guilty of ingratitude.
Any more, I pray that I might have eyes to see the many blessings so often blind to me. For if I had such eyes to see, I would certainly fall to my knees, humbled by the love He proffers me.
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For those who haven’t read it, here is the MEATLOAF post:
https://www.facebook.com/mitchellsjourney/photos/a.498931326803200.95172805.192859897410346/1060473063982354/?type=1&theater