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.
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.
It was an especially hot summer that year. The desert sun beat down on our skin like an oven set on broil. For some reason, even the shade of summer trees didn't offer much relief. Although we struggled to make ends meet, Natalie and I had just saved up enough money to replace our swamp cooler with an air conditioner. Finally, our family was able to take a break from the summer heat – and we slept much better at night because our small home was comfortably cool. I remember how excited our young kids were to wear their jammies in the summer because our home was no longer hot at night.
On this occasion, Ethan and little Mitch were in the back yard jumping from our plastic jungle gym into an inflatable pool. We seemed to go through at least three inflatable pools each year because the kids were always experimenting with them and they’d invariably pop them with sticks, lawn furniture, rocks and other things. We didn't mind. While we have tried to teach our kids the importance of taking care of things, we tried to balance that with a spirit of adventure and experimentation. Getting a few cheap pools a year was a small price to pay for the memories they made.
The news of Mitchell’s diagnosis was still fresh on our minds and heavy in our hearts. While in a state of shock, we did our best to live life the best we knew how, no matter how scared we were. Looking back, I’m glad we didn't let our fear of the future overtake us – for that would have robbed us of the moment. And those moments are priceless today.
So, I sat in the shade and watched our boys laugh and play. In my mind, I began to wonder how long this pool would last, and I smiled. Little Mitch dove bravely from the jungle gym into the pool head-first. This tiny little guy never flinched at the unknown and was eager to explore the world far beyond his comfort zone. This photo is so … Mitch.
I remember thinking to myself as I took this photo how much I admired his courage and zest for life. I quietly hoped Mitch would demonstrate that same courage in the years to come as his body dove into much deeper, fatal waters. True to form, over the years, Mitch would face his fears courageously. Whether it was his first day at school, MDA summer camp, or the scare of an unfamiliar rollercoaster. That isn't to say he was never afraid. Everyone is afraid of something. Mitch just faced his fears, however scared he felt, and kept moving on. He drank life in the best he knew how – he took all of it, the good and the bad. I always admired that about him and I often found myself following his quiet example, deep in his shadow.
Mitchell’s Journey with DMD has been terrifying. Grief, even more so. Yet, I think it’s safe to say I have found a measure of peace. That doesn't mean I don’t grieve. To the contrary, I grieve deeply … so very deeply. But peace, I have discovered, hasn’t come from the absence of grief and sorrow, but in learning to cope with it. I have found the most effective way to grieve is … to simply grieve. Like Mitch in this photo, when grief comes, I just dive in headfirst. Yes, I'm afraid of grief because it hurts. But, I have found the sooner I accept the sorrow, however painful it feels, I emerge from the deep waters of grief much faster. If I resist it, I may postpone it for a season, but in the end, it catches up to me and I only prolong the hurt.
When I look at this photo I am reminded that courage has nothing to do with physical strength. It’s more a matter of the mind and heart, seeing past the things that might stop us before we even start.
Thank you little Mitch for teaching me, however painfully, to live fearlessly.
Not long after our son passed away a compassionate follower of Mitchell’s Journey asked me for a sample of Mitchell’s handwriting. She had been following our story and felt compelled to give my dear wife something to comfort her weary heart. This is what she made - exactly as Mitch wrote it on paper just a few months prior. This kind woman, now friend, carefully mailed it to me so we could surprise Natalie for Mother’s Day. I offered to pay her for her kindness but she insisted on giving it to my wife as a gift from her heart.
When Natalie looked upon this for the first time her eyes filled with tears because she recognized Mitchie’s handwriting.
This little memento is an echo of Mitchell’s love for his mother. I’m forever grateful for this kind woman, this Good Samaritan, who felt after my grief-stricken wife on the edge of a broken road. Katelynne didn't need to do or say anything, but she did anyway … and her little act of love did a lot.
This is her Facebook page: https://www.facebook.com/SugarplumsJewelry
When Natalie wears this necklace, she often looks at it as if to look upon her son, or at least a breadcrumb he left behind … evidence this little boy lived and loved his mommy.
I’m grateful for this Good Samaritan who took the time to stop; who reached out with a little love and helped my wife a lot.