Over the Christmas break I took some time off … pretty much everything. I didn't post much here or anywhere. I still captured a lot of photos – but my mind and attention were on my family.
Natalie prepared a fabulous candlelight meal Christmas Eve. As we sat in our dining room I noticed a place set for Mitch, right next to me … where he always sat. Never a chair felt as empty as that chair did that night. I didn't say anything, but I noticed it. I think everyone quietly noticed it. Sometimes, in the rush of routines, we forget and set six places at the dinner table. This time it was deliberate. This time it was quiet act of love, a yearning of the heart, that somehow our little son might join us, sight unseen. And if not, it served as a memorial to a little boy we all loved and missed – and whose company we dearly wished.
As we ate our meal, everyone took turns telling each other what we loved about one another. It was a tender time and I loved to hear my kids talk so kindly about their siblings. Sometimes when our children fight or argue, I worry. But alas, my heart swelled when I heard Laura-Ashley sincerely compliment her younger brothers; I was proud of Ethan as we listened to him offer thoughtful observations and gestures of love toward his siblings; and I loved to hear Wyatt express his love for everyone in his young, unique way. Natalie and I both took turns, too, telling our kids what we admired and loved about them. Of all the gifts we shared that holiday, the gift of love was chief among them.
At the end we all took turns saying what we thought Mitch might have said about each one of us. We giggled a lot and cried a little. It was a beautiful night. I took a photo of the candle at the table and thought about Mitchie's last Christmas, two years prior. I then began to think about how fast, yet slow, time has already passed and how grief is no less punishing today as it was the day of his passing.
The truth about grief is it is a flame that cannot be extinguished. As long as I love, there will be fire. The difference is found in how I carry it. How I channel it.
Grief can either burn me or help me see. I choose to see.
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.