A few years ago we took our kids to feed some ducks at a local pond. At one point, as the sun was setting, Mitch pulled his iPod out of his little pocket and took this photo. Later that night, after he was tucked in bed, he sent it to me because Mitch wanted me to have a copy of the beautiful image he captured. The moment I received this photo I ran to his room to tell him I was so proud of him and that I loved his photo very much. Mitch smiled as if he were being tucked in a second time. I’ve learned from my children that tucking in has less to do with positioning blankets and more to do with letting them know they’re safe and loved. So, I kissed Mitch goodnight a second time and told him I loved him.
I treasured this photo then, but I treasure it even more today. I loved seeing the world through his eyes. What Mitch didn’t know was I took a photo of him taking this photo – which to me, is even more beautiful than any sunset. I don’t think he had any idea what a light to my heart and soul he was, and continues to be.
I haven’t mustered the courage to go through Mitchell’s iPod yet. I know it will be a tender and emotional experience because locked within that little device are movies he made with his friends, photos he took, elaborate Minecraft creations, playlists, audio recordings and much more. One day I will. One day.
This image from my sweet boy reminds me that as grief subsides the sun will rise, but it will also set. As assuredly as the sun will rise tomorrow, I will experience peace and joy. But grief will return, too.
I just received a private message from someone who just discovered Mitchell’s Journey and began to describe her own grief journey. She lost her father to ALS (which, when it comes to symptoms and fatality, is fairly similar DMD) and shared how heartbroken she was to see him go. After his passing she was strong for her family but never had an opportunity to truly grieve. She said that when she read my essay, “OKAY, BUT NOT OKAY … AND THAT’S OKAY” the floodgates opened and said she “never cried so hard in [her] life” and that it felt good to release her sadness. I had tears of gratitude for her healing.
At least for me, I have discovered some of the purging and cleansing effects of deep grief. Any more, I’m beginning to see grief as a sweet release. Though it is painful and hard to bear, it is also necessary. The irony of grief is that when we allow ourselves to hurt we also allow ourselves to heal. I don’t know much … but one thing I do know is healing hurts and hurting heals.
To lose a child is like being an emotional amputee. Yes, there can be healing around the site of the wound … but you will always want, reach and long for that which was lost. Like an amputee, you will never be the same … ever adapting to your new, compromised reality.
I was reminded of my emotional amputation yesterday. I was in a public setting when I saw some sweet children about the age of Mitch when he passed away. Suddenly I felt the waves of grief overcome me. I kept my head down so as to not draw attention … but I let the tears flow. Like a summer storm, it was strong but it passed quickly and I was on my way.
There isn’t a day that goes by that I don’t think of my son a thousand times. I’m grateful that my heart only breaks 500 times … the other 500 times are warm and peaceful. That’s progress and I can live with that.
As assuredly as the sun will rise ... with feelings of hope and peace, it will also set ... where grief will visit and my heart reset.
About a year ago I was on a flight to some place. I remember looking out the window and taking this photo of the arid landscape I called home. I then looked forward into the cabin of the plane and I saw over a hundred people sitting in their chairs flipping through magazines, scrambling with digital devices, working through puzzles, watching movies and engaging in various conversations.
There was no way to know what personal challenges each passenger was dealing with, but my guess was many of them worried and struggled because they’re human, but few of them were in crisis. Many of them seemed anxious to get to their destination so they could move on with their life. I then looked out the window again and wondered how my life could continue. I missed my son and the weight of grief loomed heavy on my soul. It felt like the weight of a million planets tugging with sorrows pull.
The once familiar desert 30,000 feet below felt foreign. The passengers all around me felt like strangers from a distant land. The world around me seemed so provincial. The mad dash for wealth, material things and the endless distractions that turns life into a numbing dream … all of it rang hollow. The meaning of life was suddenly monumental. I didn't care about anything but my wife and family and my heart ached deeply for my fallen son.
Yesterday I spoke with a man who runs the world’s largest grief organization. He asked me to be one of their keynote speakers at their next conference a few months from now. As we spoke he asked me how I was holding up and I responded that the answer to that question depends on the day, and sometimes the moment. He, being no stranger to grief, said he understood exactly what I was saying.
Today I find myself between two worlds: Earth, the world I once knew before losing my son … where the gravity of everyday life was tolerable and familiar; and the world after, where I found myself walking on Jupiter, struggling to live and breathe under the crushing gravity of grief. I live somewhere between those two places. Neither are home and I don’t sense they ever again will be, but I frequent them often.
At least for me, grief has evolved … more accurately, I have evolved. My grief hasn't changed ... it is still very difficult. The pain of my son’s death is just as soul crushing today as it was the day I lost him. It isn't difficult because I think about it, you see – it is difficult because it happened and he is no longer with me. In many ways, I miss him even more today than I did a year ago. However, my ability to carry grief has changed. I don’t know how or why, all I know is my grief journey is entering a new phase.
In 2015 I will be writing more stories of Mitch and his journey, for I have many, many to share. I will also be writing about the evolution of grief and our family’s journey through the shadows of death and how we are learning to find a new normal.
I am no longer afraid of going to sleep or waking into feelings of terror – though I regularly experience moments of terror. I no longer cry every day – though I still have frequent, intense moments of weeping. And though at times my eyes may seem dry, rest assured that my soul still cries.
For as long as I love my son, grief will be my constant companion - so I am learning to co-exist.
While he was living, I don’t think little Mitch knew how much his life meant to me. I've discovered it isn't possible for our children to know how much they are loved. It seems one has to become a parent to truly understand the depths of that kind of heavenly love.
As I find myself between two worlds, I am learning to take up residence here. I can see things today that I have never before seen … for grief has changed my sense of being. Strangely, though I ache for my son, I find this new place, though painful at times, a heavenly one. Now, if only I could hold my son …
It had been two days since Mitchell passed away and I walked into my son’s room with a quiet hope in my heart everything was just a nightmare. Instead, I found my wife in quiet agony. There she lay on his bed holding his small teddy bear, which still bore the scent of our son.
Our home was suddenly barren, our hearts desolate.
Just a few days prior our home was filled with family to support us while our son was dying, each believing they were helping us in our hour of greatest need. What they didn't realize, what none of us realized, was that was the easy part, by comparison. Hell, with all its thunder and fury, happens in the aftermath … long after everyone leaves and you are left to navigate the bewildering wilderness of grief and desolation. It seems that everyone has it all backward - but that is a conversation for another day.
Contrary to what many think, holidays aren't as difficult as one might imagine. Oh, they’re plenty hard, but because you know it’s coming and you’re expecting it to be hard, you brace for impact and it somehow doesn't knock you off your feet. At least most of the time.
While holidays are difficult, there are harder things still. It’s the ordinary Saturday mornings when we work as a family to clean the house. I look to the windows my son used to faithfully wash, or the floor he would carefully mop … and he is not there, nor anywhere. It’s the absence of ordinary things that take your breath away and bring you to your knees. It’s the empty bed, the vacant chair at the dinner table, the unfinished Lego projects, or spiral notebook with handwritten stories Mitch wrote; it’s the saved games in The Sims or Minecraft that show a world Mitch worked hard to build … forever frozen in time. It’s the ordinary stuff we miss, the very stuff we take for granted. Among its many layers, grief is a deep longing for the ordinary.
“Although in the shadow of the moon, or the quiet of my closet, or deep in my wilderness I weep for my fallen son, I can still feel the light of the noon day sun and happiness returns as I recount my many blessings – each of them, one by one. Indeed, all I really have is what I’ve done.”
So, as I entered Mitchell’s room and saw my dear wife in pain, my heart sank to the floor. I missed my son with all of my soul – and though my heart wished otherwise, I realized my greatest nightmare was my reality. I fell to my knees and wept ... longing for the ordinary. I hurt for my tender wife and family. I hurt for my son. I later wrote in my journal, while pondering this moment of grief, “At the end of the day all we have is what we've done.” That saying came to my mind with great force and conviction. All the things we work so hard to gather unto ourselves, the riches of earth and the praises of man can all be taken in an instant. I began to think about the memories we made and the things we did as a family and the love we shared. Though death can take away my son, it cannot take away the things we've done. Though death and absence can hurt our hearts and wrench our souls, it cannot take away the love we shared or memories we hold; for love and memories cannot be bought nor can they be sold.
At the end of the day, indeed, all we really have is what we've done.
It has almost been a year and a half since I lost my little boy … my little soul mate. Though the weight of grief isn't as constant as it was last year, it is as heavy and visceral as it’s ever been.
There is a Jewish Proverb that says, “Don’t pray for lighter burdens, pray for a stronger back.” It is to that end I pray; that my back will be made strong so that I might carry the inescapable burden of grief with a glad heart and cheerful countenance. Although in the shadow of the moon, or the quiet of my closet, or deep in my wilderness I weep for my fallen son, I can still feel the light of the noon day sun and happiness returns as I recount my many blessings – each of them, one by one. Indeed, all I really have is what I've done.
I have three other wonderful children who I am also losing. Though I am not losing them to death, I am losing them to time. Before I know it, they will graduate from high school, go to college, find their own purpose in life and start families of their own. Everything I have today, everything I’m tempted to take for granted, will soon no longer be. One day, in the not-too-distant future, I will long to have my little ones back with me.
I choose this day to make my moments matter, from here to evermore. I have come to understand with greater depth, because of my fallen son, all we really have is what we've done.
Last night I went on a date with my sweet wife. As we were driving we saw a beautiful sunset and pulled over so we could enjoy the canvas of light that was disappearing before our eyes. Mitch was a fan of sunsets, too, and we couldn't help but think of our little boy and how he would have enjoyed seeing what we saw.
To our left was a most beautiful array of warm colors as the sun was slowly descending; to our right were storm clouds (not seen in this image) that had all manner of deep blues – the contrast was stunning. As my wife walked down a dirt road to take in the sky I couldn't help but think of our journey to find a new normal. Though I didn't see Jupiter with my eyes, I could feel its tug nearby.
Later that evening I posted this photo I took with my phone to Instagram with the caption, “In Search of Home” making a veiled reference to a recent post about our journey from Jupiter, “Should I live out my days marooned in some place between the punishing gravity of grief and the near weightlessness I knew before, I will count myself blessed.”
This image isn't meant to be sad, nor is it a cry for help; rather, it is a symbol of progress, our journey with grief and our search for a new home. It shows we no longer live on Jupiter with its thin air and crushing gravity, though it is close by and the pains of loss shuttle us there often. The point of this image is we don’t live there anymore yet we search for a new home in an unfamiliar place.
For us the world remains unfamiliar on so many levels. The most mundane things remind me the world we once knew is no longer. When we go out to eat or see a movie as a family and we’re asked how many to our party, I often say “six” then quickly correct myself … “Oh, I mean five.” I never knew a simple number could hurt so much. And then there are those who naively say, “It’s been a year, it’s time to move on” … yet they know nothing of such a loss. They remind me that even the people in my life, however well intentioned, live in some other place much different than my own.
What I've come to understand is the journey of grief is as unique as the individual bearing it. I have known death; I have lost a parent, family and best friends, but nothing has acquainted me with deep grief like the death of my child. That is an altogether different, catastrophic sorrow – there is simply no comparison. Yet, I think I have discovered something about grief: we don’t make a journey through grief … instead we make our journey with grief. Once we appreciate the force of that distinction we realize we never get over the death of a child we just learn to carry it differently.
I have witnessed how having a child changes one’s life forever. In life there is simply no equal to the experience of having children. As I've noted earlier, 12 years ago Mitch didn't exist and I was quite content without him … but now that I've had him I find myself struggling to find a way to live without him. Because of Mitch, and my other children, my world has forever changed.
In the grand scheme of things, it seems humanity needs our children as much as they need us – for we are both teachers and students to each other. My children have taught me patience, sacrifice and the deepest meaning of love. Had I forgone the opportunity to have children I would have missed out on the greatest miracle in all the universe.
I have so many new stories to tell about Mitch and his journey. I don’t tell these stories to wallow in sorrow and I don’t tell them for fear my son will be forgotten – I tell them because they are what’s in my heart at the time … and if someone else can find their way through their own struggles, it is well with me.
Though I may speak of grief [often through my grief] know that I do not live in a constant state of sorrow. Let this image become a symbol, not of sadness but of progress … that the journey continues as we search for a new home and a new normal.
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