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.
There are a lot of moments in life I wish I could do over so I could do them better. Then there are some moments that are so wonderful I want to do them over so I can re-experience them. This was one of those moments I wish I could do over.
It was January 9th, 2013 when my sweet wife sent me a text message about a lunch date I had with my son that day. Because I’m an impulsive memorist, I screen captured her message the moment I received it. Looking back, I’m so glad I did.
This was just a few short weeks before Mitch went to the hospital for end-stage heart failure. On this day Mitchell’s school invited parents to have lunch with their kids in the cafeteria. I had known about this for a few weeks and I was so excited to hang out with my son. At his request I brought him an Arby’s sandwich, curly fries and a chocolate shake. That was his favorite, and mine too.
As we sat in the cafeteria Mitchell’s aide, Alex, asked if he could sit with us. I was excited to have him spend time with us so I could learn a little more about how Mitch was doing at school. Mitch liked Alex and trusted him and seemed to always feel safe around him. Alex doesn't know it, but Mitch talked about him at home often and our hearts were always relieved that he had him as a friend and aide.
Mitch, being soft and shy, sat at the table quietly dipping his curly fries in a generous pool of Arby’s sauce and saying hello to the kids who wandered by and waved at him. I loved to see Mitch in his element and to see that he had friends all around who cared about him. I was also able to watch Mitch play UNO during recess and was reminded that life doesn't have to be perfect to be great. I know that little Mitch had a great life and that soothes my broken heart.
At one point during our conversation Alex started to tell me something about Mitch and his older brother that touched his heart and in turn touched mine. He said that every day, without fail, Ethan (his older brother) would come up to Mitch at lunch and say hello and give him a brotherly hug. Alex mentioned how that act of kindness affected him and he started to tear up. This grown man, a retired commercial pilot and former military officer, who has seen more in his life than Mitch and I combined was moved to tears by that gentle act of kindness between two brothers. I remember being almost moved to tears by what Alex said and how it affected him. I was grateful then, and remain today, that this good man was part of my son’s life.
I was also reminded that Mitchell’s Journey was so much more than the journey of my broken boy. As I wrote in a recent post … “I used to envision life's journey as a single, straight path. But the older I get, the more I'm beginning to see, just how intertwined our lives really can be. Life is not a path to be tread by one, but a web so intricate and woven … it is, I am certain, heavenly spun.”
This was my last school lunch with Mitch … almost 2 years to this very day. I wish I could go back in time and drink in this moment more deeply. I wish I could do this day over, not because it was bad, but because it was that good. I can’t think of a single business meeting that was more important than spending time with my son at this very moment. This day was an investment in time and attention that is paying dividends far beyond grief and loss.
The truth is, I've made a hundred million mistakes in my life. In so many ways I identify with the phrase, “O wretched man that I am.” But once in a while I get things right. On this day I got it right. I spent time with my son and lived what I valued – and that is worth more to me than all the treasures of earth. On top of that, I spent a moment with this good man who loved my son and shared something I wouldn't have ever known … and because of that, I learned a lesson of love that day I shall not soon forget.
So, although I wish I could do this day over so that I might re-live the love that I felt for my son, because I did my best to be with him, instead of wishing for what might have been, I can at least be grateful for what has been. I can’t re-do moments – but I can re-live them in my mind and heart. And that’s close enough. Today and forevermore, I hope to live a little better than the day before – so that when I am old and tired … anxious to pass over so that I might see my little son again … I hope to look back and be glad I lived the life I lived. Perhaps when I truly have heaven’s eyes, I'll look back and want to do my life over … because, despite the weight of grief and depths of sorrow, it was that good.
Last year an anonymous follower arranged to have a bracelet made that bore my son’s handwriting of the last thing he ever wrote me. When I opened the package and saw it for the first time, I wept. I had posted a photo of Mitchell’s handwritten note when he was home on hospice many months prior and this kind person used that photo as the source for the bracelets inscription. I was profoundly touched by this gift. Whoever you are, thank you. I wish I knew who you are so I could thank you personally.
The woman/artisan who was hired to make this bracelet was the same woman who sent my wife a gift just after Mitch passed, again with his handwriting that read “I Love My Mom.” I will write of that sweet story soon.
I have treasured this bracelet greatly. Although I have many weaknesses, this memorial around my wrist serves as a reminder to always do my best. While in Mitchell’s eyes I was the best, I knew I fell short in so many ways – but I always tried my best. Like the saying, “fall down seven times, stand up eight”, that is what I will do until my dying day.
As I approach Memorial Day I have a certain heaviness in my heart. I am grateful for the men and women who sacrificed their lives for peace and freedom –and I will always reverence them. At least for me, Memorial Day also represents another layer of fallen ones … the ones who fought a different kind of war and died while fighting to live. My son is one of them; along with so many other children who fought a battle with DMD and lost. In fact, that is a battle no one survives. Not one.
So this weekend I have a reverent heart for those who fought violent battles behind enemy lines - and also for my son and many others who fought an invisible biological enemy and died.
I have long lamented the tradition of honoring someone after they've died when they could have used the boost while they were living. I never go a day and not tell the people around me how great I think they are - for they may be fighting an invisible battle of the soul and dying a little inside each day. Everyone is fighting a battle of some kind ... so why wait to compliment, honor and build up the ones we love until they are gone?
What's more, we write funeral talks, paint masterpieces, sculpt statues and build all manner of memorials in honor of the fallen. And while those are good and worthy endeavors, I would rather become a living memorial than build one. I would rather take the lessons learned at so high a price and become what I learned rather than point to a statue of an ideal. This day, and every day here after, I will try to sculpt my life in such a way that I bring honor to my son – a much worthier soul than my own.
As I make my journey to that place beyond the hills, I know I will fall down seven million times … but I will stand up seven million and one – because my little boy believed in me and saw something I didn't.
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Bracelet created by: www.facebook.com/SugarplumsJewelry
We were out of time.
The window to laugh, build Legos, have Nerf gun battles, and play games as a family had closed. As that window closed a new window was beginning to open. A window to that other place; a place that requires faith in order to see and feel … a place that hides behind a curtain of darkness where everything there is out of mortal view. I could feel the breeze from that new window that was opening – it was both calming and frightening.
Each of us came to Mitchell's bed to have a sacred one-on-one conversation ... to say goodbye to a sweet little boy who had been woven into our hearts and souls. As hard as it was to say goodbye then, it is infinitely harder now that he is gone.
This was the end and deep inside my heart I was terrified. Sweet Mitch knew he was about to die, yet he faced that harsh reality with dignity and selflessness. He wanted his mommy to know he was going to be okay. But inside I wasn't okay. As his father I spent my life trying to care for and protect my son and couldn't save him from DMD. If my son had cancer, he might have had a chance. But for children with DMD, there is no escape. Absolutely none.
When it was Ethan's turn, he knelt gently by Mitchell's bed and held his hand and told him how much he loved and admired him. As I left the room I turned my head and saw two young boys who just wanted to play – and my heart was pulverized. I quietly shut the door and fell to the floor and wept tears of the deepest sorrow.
This would be the last conversation they would have in mortality.
Later I learned that Ethan made sacred promises to his little brother. Ethan told little Mitch he looked up to him and that he would never forget what he taught him. He promised his dying brother he would live a life that would honor him. They talked for 45 minutes.
As my son was slipping away my mind and heart were wracked with self-doubt and sorrow beyond all description. A torrent of panicked questions flooded my mind ... "Have I said all that I want to say? Have I apologized for all of the times I disappointed him? Does he know how much I love him? Really, truly, does he know? How do I say goodbye to my little boy? Is my son okay?" Despite the panic and doubt in my heart, I tabled my emotions for my son and remained calm and assuring for Mitch. To Mitch I could fold mountains and put them in my pocket. But inside I was stumbling over pebbles.
I wasn't afraid of death for I know life continues after death. I know it. But I was afraid of goodbye. I was afraid of the end. The end of cuddling, of conversations, of hearing his voice, his laughter, his sense of humor, his very being as I knew it. It was all coming to an end. Although I knew goodbye was "just for now" - it hurts just the same.
I had weeks to prepare knowing this time would come, yet despite my preparations for this loss I was trembling in agony. Intellectually and emotionally you brace for the impact of this loss - but when it happens you realize the bracing isn't to stop the impact but to keep you from breaking apart.
I don’t know what promises Ethan made Mitch this day - but I know he will keep them. I also made promises to my son – that I would do my best to live a worthy, good life – so that I might see him again. And while I am mortal and deeply flawed, I will not stop trying. I will pick myself up when I fall and keep trying. That is my promise. I will never lose sight of my son and I will pay any price to be with him again.
As I wrote in a post earlier last year, “there is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”
I run.