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.
Mitchell’s last Nerf gun battle lasted 2 minutes. Just as his war game was beginning to unfold, he leaned against the wall about to pass out while taking very shallow breaths. With a whisper in his ear, “I love you”, Natalie lifted our son in her arms and gently took him back to his room. Mitchell looked off into the distance with his arms softly wrapped around his mom.
We knew there wasn't much time to play. So, just prior to the Nerf battle, Natalie made haste and quickly tore a piece of fabric from one of her dresses to make a headband – to show little Mitch she was “all in”.
As I followed them back to Mitchell’s room, my heart swelled with a love and sadness that to this day I cannot find words to describe. In her arms was our dying son who just wanted to be a little boy.
Mitchell would never leave his room alive.
During his time at home Mitchell received hand-written letters and packages from all manner of military officers who were serving all over the world – some in hostile theatres. They had been following Mitch and wanted him to know they were inspired by his courage and strength. Some even said it was for him they fought. One of the tender ironies was Mitchell loved the military and was so touched they would even think to write him. Call of Duty was one of his favorite games and, for a 10 year old, he had a brilliant tactical mind. Upon reading some of these letters from Marines, Mitchell would ask me “Dad, do they really think I’m strong?” I turned to my son and said, “Son, in every way that matters you are as strong as they get, and I am so proud of you.” His brow furrowed as he began to think deeply on my words.
Mitchell was so tired and listless at the time, but I continued, “Let me tell you why I think you’re as strong as people get: real strength is doing the right thing when nobody is looking … and you have always done that. You are trustworthy and obedient and good. I am so proud to call you my son. Strength, the kind of strength that matters, isn't found in the body, but in the soul. And Mitch, you have a very strong soul. I love you so much.” I kissed his forehead and he lifted his arm around my neck to hug. If only I could have frozen time …
Within 24 hours of this photo little Mitch would gaze out his window for the last time and contemplate his life and accept the harsh reality of his death. This young warrior, who was mortally wounded by an invisible enemy, demonstrated one of the highest forms of strength and selflessness by telling his mom he was going to be okay.
Having lost my son to a biological enemy that knows no ransom, has no mercy, and offers no remission … I have decided to take up arms against this enemy of the body: to fight Duchenne Muscular Dystrophy with all that I am. This is a battle worth fighting because little boys like mine deserve to live - and any family is at risk.
I have been taught that if we turn to God, weak things can become strong things; that God gives us weaknesses so we can become humble, and if we turn to Him in our weaknesses, God will make weak things become strong things. That is one of the reasons we are given hardships in this life. Today, I have more weaknesses than I have strengths but I hope, in time, I can become as strong as my little son.
There have been agonizing moments, while stumbling in the pitch darkness of grief and loss that my soul has cried out “if anyone deserved to live, it was my son”, and that I should have been taken instead. Then a whisper to my soul reminded me death is not punishment, but rather a transition from one state of being to another. I was reminded of an 18th Century philosopher who said “We are not human beings having a spiritual experience; we are spiritual beings having a human experience.”
The purpose of life: a masterfully calculated landscape of hardship, happiness and putting trust in things that are invisible to the eye but discerned spiritually … all in an effort to refine our souls. And while the world seems in a constant state of unrest and war … I find myself ever more concerned about the quiet battles of the soul … the kind of battles that destroy us from within. Those, too, are battles worth fighting – and fighting well.
When I took this photo, little Mitch and Ethan were racing down a slippy-slide on their tummies. I loved watching these little kids be kids.
At one point they decided to slide down together at the same time. When they reached the bottom they both sat up and laughed as only little boys know to do. Ethan then reached around his little brother and gave him a big hug. Mitch smiled and hugged him back, then a few seconds later kissed him on the cheek. I posted that photo some time ago.
As I watched these little brothers, my little boys, be good to each other my heart swelled with a love that was eternal – a kind of love that is not from this place. I don’t know what little Mitch was thinking at the moment of this photo, but I can’t help but wonder if he was learning love.
Mitch was a quiet, reflective thinker. His facial expressions often revealed he was thinking deeply on a topic. And his eyes … oh, his eyes … there were layers within layers. Sometimes, when we had father-son time, Mitch would share his observations (which were startlingly perceptive) about adults, peers and life in general. Though he wasn't a boy of many words, and his vocabulary was limited to that of a young child, he had moments where his words were deeper than deep.
There was one point in Mitchell’s young life, not too long before we discovered his heart was in trouble, he had an aide who was unkind to him. In fact, from what I can tell, she was rude and borderline abusive to him. It broke my heart to learn such things. When we learned of the trouble Mitch was having and the things she did and said, you can bet we intervened. To my dismay, this woman never owned up to her behavior and had a pocket-full of cheap excuses. She was reassigned. I was sad for her and confused why she would be unkind to a little boy who struggled in ways healthy children did not. As I struggled to understand why she was the way she was, I remembered the saying “those who hurt people, hurt.”
My point isn't to excite Mitchell’s Journey readers to anger that someone would be unkind to Mitch. Please, let that go. Instead, I want to draw focus to Mitchell’s response to those who were unkind to him. When I asked Mitch how he felt about things he said, “Dad, I just try to see with my heart.” I was taken aback by his statement and asked, “What do you mean, son?” Mitch replied, “When you see with your heart, you see everything that matters. She doesn't mean to be rude.” He didn't know what else to say or how to describe how he was feeling – but I could tell he had already forgiven the woman who was unkind. He saw more than I saw. He saw a soul in need of love and understanding. I remember crying when Mitch shared his thoughts of forgiveness and love. I said to my son, “Mitch, who were you before you came here?” I had the feeling his soul, wrapped inside that broken body, was much older than mine. With that, I kissed him on the forehead and we drove to an ice cream shop and talked about some upcoming movies he wanted to see.
When you see with your heart, you see everything that matters. Wow. I wasn't seeing with my heart, but instead my troubled mind. I was upset and, in truth, I had feelings of recrimination. But Mitch saw something different … he saw with his heart and that freed his heart from anger.
I have been hurt a time or two in my life. I know how intoxicating anger can be and the prison it can become. I also know when people do us wrong the very act of forgiveness might seem nearly impossible. But Mitch taught me how to see with my heart and remember that we all come from the same place and we all have the same Father.
Though we may be strangers in life, when we see with our heart we realize we are no different than these brothers in this photo. We are family ... a human family with a common spiritual source and we are here to learn love. When I remember that, when I see with my heart, I see everything that matters.