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.
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.
We didn't know it, but this was Mitchell’s last summer. As much as he enjoyed giant roller coasters, Mitch sometimes opted for the smaller ones so he could rest a little. Because generalized muscle weakness was settling in, riding the bigger coasters was hard for him. And, whenever he went on a big one, I would sit next to him, reach over and hold his head steady and do for him what his neck muscles no longer could. Mitch loved the thrill of rides.
On this occasion, Mitch and his brother Ethan were taking a ride on a much smaller roller coaster. I sat outside the perimeter and took photos with my larger lens. Though I was a distance away, it was almost as though I were sitting next to them. I have a bunch of photos from this series, each photo revealing different expressions of thrill, laughter, and surprise.
With a rush of wind, the caterpillar shaped ride whipped by me at lightning speed – offering brief relief from the heat of the summer sun. Each time they passed where I was standing Mitch would make very deliberate eye contact with me and smile. I would always smile back as though to say, “I love you, son.”
On this particular ride, I asked Mitch why he and Ethan closed their eyes. Mitch said he wanted to know if the ride would be different if he couldn't see. He said with great enthusiasm, “It worked! It was so fun. It was like a totally different ride.”
I love this photo on so many levels. I see two young brothers that loved each other with all of their hearts. Neither of them were peeking, but instead honorably doing what they agreed to do: experience the ride without sight. How easy it would have been to cheat and crack their eyes open a little, but as far as I can tell, they didn't. And what I know of these boys, they wouldn't. That is just like them: honest and true, through and through.
I am sure their memory of this experience may have faded quickly from their young minds, but I haven’t forgotten this moment. And at the time, I couldn't stop thinking about it. I thought to myself, “Perhaps little Mitch was on to something. How often do I go through life relying solely on the things that are plain to see? Perhaps, when I do, I’m cheating myself from life’s deeper mysteries.” I’ve always tried to look at life through spiritual eyes, but I’m still human and sometimes I forget.
This much I do know … when I look at my life with mortal eyes, I see sorrow and loss much differently … painfully. But when I close my lids, and listen with my soul to that quiet, heavenly bid, I know there’s more to life that I can possibly see. I am grateful for a loving Father who patiently waits as I learn to see things differently.
Who would have thought, two young boys on a rickety roller coaster ride would accidentally teach me something about seeing with my spiritual eyes?
I am human. I am still blind. But more and more, I’m learning to see with my spiritual mind.
One day, when I truly have eyes to see, my heart won’t carry that constant ache that hurts so terribly. In fact, my mind and heart will see things so differently. For, all my pain will have been traded for spiritual gain. Then, with tears in my eyes, I will see my boy so differently. I was never really teaching him, you see, for he was teaching me.
I took Wyatt to work with me today and had a most wonderful time. He is on the track system and has the next few weeks off and wanted to spend some time with me at the office.
So, he sat patiently while I was in meetings and never once complained. Just after one particular meeting this morning he asked me, "Dad how long was that meeting?" I responded, "Oh, it was about an hour." Wyatt said "Wow, that felt like 4 hours." I smiled, pat him on the head and told him that I loved him. I said, "One day, time won't seem to go so slow ... and you'll wake up and wonder where all the time went. You'll wish for it to slow down, but it will only seem to go by faster."
I then took Wyatt with me to see one of my clients - someone I've worked with for many years and has become a dear friend to me. We've traveled the world together and done some great projects.
My client-turned-friend even attended Mitchell's funeral, not because he had to, but because he cared.
So as I sat at his table ready to talk about some upcoming work for the year, he pushed everything aside, reached into a cupboard and pulled a bucket of treats, placed it on the table and just sat and talked to Wyatt for a while.
My heart swelled, because this good man cared about people ... and at the end of the day people (and relationships) matter most. My heart was especially touched because my friend's mother is dying of ALS right now. Though not the same as DMD, they share many outward characteristics ... most notably catastrophic muscle wasting; and at the end stage an inability to breathe, swallow or move on ones own. The timing is unknowable, but she might only have about a week left. I know his heart is heavy ... but not so heavy that he can't lift the heart of a little boy and help him feel important and good about himself.
Wyatt left his office feeling a lot more confident ... and as small as he is, that he still matters to big people. I am so grateful for good people like my friend Jeff. If the world were a cup, it would be overflowing ... correction, it IS overflowing with good people, just like all of you.