Last week, on the 3rd anniversary of our son's passing (the very day, in fact) we received a package at our door. With trembling hands, we opened it only to discover a cross stitch of our son patterned after one of our very favorite images of Mitch. Meticulously woven by different colored threads, it looked like a photograph.
A compassionate follower-turned-friend gave this to us as a labor of love and a token of her affection. I remember first becoming aware of her when I saw her post photos of her family wearing#milesformitchell t-shirts as they participated in our virtual runs. They would make hand-drawn posters and gather as a family to take pictures, expressing their love and support. I was so humbled by her love made visible.
So, when Natalie and I had the pleasure of finally meeting Vanessa Bryson and her son in South Carolina when we gave a keynote at a conference a few weeks ago, I felt like I was seeing a long-lost family member. She was just as loving and kind in person and she seemed online.
A day prior to this package arriving we received a smaller package that contained a loving hand-written note, a few first place ribbons she won at a competition along with the proceeds of her winnings to be used for flowers at Mitchell's headstone. My wife and I wept over her incredible gesture of love.
This beautiful work of art ... this love made visible ... will hang in our home as both a reminder of our son whom we miss so much and the amazing people that live on this planet; people who care enough to reach out and love complete strangers. Thank you Vanessa, for your love and friendship and for being such a tender part of our healing journey.
When Mitch was a tiny baby he knew just how to make me smile. In those early years I remember driving to the intersection where Natalie served as a crossing guard, surprising them with a quick hello. Baby Mitch sat in his car seat content with life and just glad to be alive. Natalie, his faithful mommy, would read books to him as they waited for children to cross the road. Mitchell always seemed excited to see me, but I was even more excited to see him. I'd jump in their car and we'd just talk. Mitch would look at me and smile - and that always seemed to turn a good day into a great day.
This morning as I thought of him, he did it again; I felt his smile in my soul. Today is going to be a great day.
“The trouble with time is we always seem to think we’ll have enough of it.”
The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son.
The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.
Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band aids, scraped knees and children’s books. But that was not our lot in life.
I’ll never forget our first encounter with our hospice nurse. She was so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition to death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare my son.”
After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to truly grow.
Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow.
So there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears wondering how I could have been a better husband and father. I made plenty of mistakes and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes and I always made things right with my kids. Instead I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.
The trouble with time is we always seem to think we’ll have enough of it. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much.
When Mitch was tiny, he would sit in the back of a trailer attached to a 4-wheeler while his uncle drove short distances at a quick speed. Mitchell’s chubby little fingers gripped tightly the side of the trailer as he screamed and laughed like a baby pirate in pursuit of childhood treasures. Laura-Ashley and Ethan sat beside him and giggled at how fearless their little brother seemed.
Afterward, I would show Mitch the photos I took and he would say, “Dat made my tummy gig-go.” I would burst out in love-filled laughter, then hug and kiss his cheek. To this day, I can almost feel his little arms around my neck as I hugged him.
As he grew older, Mitch loved rollercoasters. He was fearless and enjoyed the rush and thrill of any ride – no matter how big and scary it may have seemed to an adult. During his last few years, I would have to reach over and hold his head steady on rollercoasters because his neck muscles were getting weaker. Sometimes while Mitch was laughing on a ride I would find myself crying; the combination of tears and the rushing wind blinded me from seeing my son’s smile. I cried because I knew everything my son enjoyed was coming to an end; not through death per se, but because DMD was destroying his muscles and I knew there would come a time he wouldn’t have the strength to lift his head from a pillow. A bitter irony for a little boy who drank life in by the goblet and spared no opportunity for adventure.
When I look back at this time with tiny Mitch, and the million-and-one other times just like this, my heart overflows with gratitude. Yes, heartache happened, but so did indescribable joy and fulfillment. Hurt is the eventual price we pay for love – whether we love a parent, sibling, child or pet … one day, we will lose all of them to time, circumstance and death. But that hurt is a small price to pay for a shot at love. I wouldn’t trade all the hollow pleasures and treasures of earth for this kind of love. It simply doesn’t compare.
This little boy happened … and with him came a hurt I never imagined, not even in my darkest nightmares. But so also came a love and joy I never supposed, not even in my most heavenly dreams.
This happened, the good and bad, and I am better for it. I thank my Father every single day on bended knee; for I know love and sorrow, and now I see.
I am posting a few other photos from this series on Instagram:
instagram.com/mitchells_journey