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.
Two little women who completely stole my heart.
And thus began our family and our journey we did start.
Happy Valentine's Day!
Several months before Mitch passed away a friend and colleague handed me a metal coin he created for one of his businesses. On the face of it was etched a butterfly and the word transformations. He gave it to his clients as a token and reminder of what we are meant to become, something far greater than we currently are. This good man, who has faced incredible difficulties of his own, learned to channel his own disappointment and sorrow into love and the service of others. I admire him greatly.
On this afternoon we took Mitch and the kids to the mountains where we would take our second-to-last family photo. Had I known what little time was left, I would have asked Natalie if we could take turns driving so we could each cuddle with our son.
We found ourselves at our destination surrounded by a forest whose colors, save a few patches, were nearly gone. Mitch and the kids scooted down old wood trail across the marshland. I reached into my pocket and discovered the coin my friend gave me, which I mistakenly thought I left on my office desk. As I held it I couldn't help but take a photo of it and contemplate the process of transformation. Soon, I would find myself wrapped in a cocoon of grief, wondering if all was lost and if life would ever be worth living again. Such is the sorrow of losing a child.
I really don’t know much about grief, but I’m learning a little each day, and each day I experience a little more of a transformation. I used to write of my journey THROUGH grief, as though somewhere a great way off, there would be an end to it. Any more, I write of my journey WITH grief. For as far as I can tell, grief will be my companion so long as I live on this earth. Such, also, is the sorrow of losing a child.
There was no way of knowing what would happen when I started Mitchell’s Journey. Like a camping tent, I set it up with the intent to eventually take it down. I don’t think I can do that now. Mitchell’s Journey has transformed into something I’m still trying to understand.
I will still write of hard things because hard things happened. I will share hard stories because I don’t want anyone to ever confuse DMD as an inconvenient journey. Duchenne Muscular Dystrophy is a fatal journey. 100% catastrophically fatal. Not one can escape it.
I recognize, also, the exhausting toll such stories can take. So, I am also going to write of the transformation I’m experiencing and the hope and happiness I feel in my heart. Today I feel as much joy in my heart as I do sorrow, which thing I never imagined nor ever quite supposed. The journey of grief has taken me places I never had a mind to go.
To those who are stumbling deep in the wilderness of grief, I want you to know there is eventually peace. It will never stay, not like it did before, but you will appreciate it when peace comes to you more and more. The road is long and skies sometimes dark and bleak, trust me when I tell you … somewhere out there, on your own journey, is happiness and peace. Just keep moving forward at your own steady pace and remember the journey of grief is not a race.
One day, perhaps at our journey’s end, we will look back on our broken paths and marvel at where we've been. I wonder if the parts of us we thought were so broken will be the very thing that transforms us like the promise of this token.
We decided to take our kids up Big Cottonwood Canyon (near Park City, Utah) before the snow came.
The leaves had fallen and covered the ground like crunchy wrapping paper on Christmas morning. Nature’s blush was fading fast and all the world was about to fall into a wintry slumber. Because the ground hadn’t frozen yet, you could smell the dirt, pine and leaves like a sweet potpourri made by the loving hands of Mother Nature.
Mitch loved smells and breathed in deeply with his nose and said, “Dad, doesn't it smell good outside?” I smiled softly at him and said, “Yes, son, isn't earth awesome?” He smiled back at me then a little while later took another big whiff of Mother Nature’s perfume. I couldn't help but notice how Mitch kept stopping to smell the air again and again. It was almost as though, without knowing it, deep down he knew this was his last chance to drink the season in.
This was his last outdoor adventure before it snowed.
We were high in the mountains, parked next to a natural marshland. Wooden walkways carved a path through some of the marsh, then to a dirt trail that circled a small lake. Mitch loved going here because he could see ducks, fish and all manner of wildlife. At one point Ethan and Mitch raced ahead to explore like young boys love to do. I took this photo of them peering over the edge of the walkway at some fish swimming near the surface in hopes of something to eat before the water froze.
Because DMD had weakened his muscles, Mitch couldn't walk long distances and used a scooter to get around. Ethan was always careful to make sure he never left Mitch behind. That simple gesture to wait for those who struggle to keep up; that is a measure of love and charity in my book. When I saw this quiet, unrehearsed act of love I wondered how often I had left others behind: others that could have used loving encouragement, a helping hand or a shoulder to lean on. There before me were two young boys unaware of the lesson they just taught me. They were just simply being young. They were just being good.
Mitch seemed to always care for others, too, and was mindful of those left behind. One Sunday, as the kids were getting ready for church Natalie noticed an extra set of scriptures in Mitchell’s bag. When asked about it Mitch said, “Oh, mom, those are for Luke because he sometimes forgets to bring his own.” Little Mitch didn't want his friend to be left behind or feel left out; he was naturally his brother’s keeper. When Natalie first told me that story I wept tears of love and gratitude. Not all tears are sad … some come from another place that make your heart feel glad.
I learned something this day I will not soon forget …
A measure of love is looking back to see who you can help. It is the deepest form of charity because it requires you to forget yourself. The funny thing about what it means to love and lift another, you never lose ground when you reach down to help a sister or a brother. In a world saturated with fear and hate we ought not throw sharp stones, but rather find those who are heavy hearted and seek to mend their bones. A strange thing indeed, the paradox of love … you cannot give it freely and not feel closer to heaven above. Looking back and helping others, that is a measure of love.
Mitch has gone far beyond … where mortal eyes can’t see. Though I stumble forward, trembling with grief and feeble knees, I sense somehow that he is helping me. Perhaps one day, when all is said and done, we'll see there was an unseen army helping us, when we felt like only one.
After all, isn't that how things in heaven are done? Its not so much about the 99, but rather looking back to find the one.
A beautiful measure of love, if I ever heard one.