NOT EVEN IN OUR DREAMS

Last night Natalie and I went on a wooded walk. We wandered through the crunchy leaves and just began to talk.

The air was crisp and fragrant, rich with earth's deep tones. If only we could have a bottle to keep and call our own.

So there we shared some gentle words about life and other things. Then our souls went where words do not exist, nor can they … not even in our dreams.

It’s strange to live in such a place, where peace and grief reside. The loneliness of longing forever at your side.

I saw my wife, two lives rolled into one. Arms filled with love and family, yet empty in search of our little son.

Yet something happened in the woods last night – something we didn’t quite see. We knew the season was changing, and suddenly we realized so were we. 

Grief evolves. How could that be? I think I see it now, it isn't grief that changed, but me. 

Yet there is still a deep, dark wood. A place that is felt, not seen. Where words of grief and anguish do not exist, not even in our dreams.

 

MY WILDERNESS

As a young boy I used to get lost in the back woods of Edina, Minnesota. The wilderness was thick with all manner of vegetation, rocks and hills – and because of the very nature of nature you couldn't see very far. And when fog settled, you could see almost nothing. 

Being lost as a young child reminds me of the landscapes of my life. Sometimes I sit upon a vista with clear skies and can see far into the horizon. Other times I am scaling my Everest – afraid I might fall. Still, other times I am traveling through a wilderness of hardship where the fog of the unknown makes seeing what’s ahead almost impossible. 

Regardless of the landscape upon which I journey, I have learned to travel by faith. That doesn't mean to travel blind or dumb, but to learn to see with my other eyes and hear with my other ears. There is a difference, and it is significant.

As Mitch started to slip away, I found myself descending into a dark wilderness wherein I could see very little. The further we traveled into this wilderness of grief and sorrow the more difficult the terrain and the thicker the fog. I would hold my son’s face and tell him how much he meant to me. I would kiss and hug him and try to assure him – but inside I was terrified of losing him. I love him so very much. With each minute, each day, the wilderness became ever dark and perplexing. I have never known a wilderness such as this.

My wife came into my office today with tears in her eyes and said, “I know it’s officially tomorrow night (the morning of March 2nd) that Mitch passed away, but the day was on a Friday last year. Today is Friday.” Tears filled my eyes, too. I realized then I am still navigating the wilderness of grief. And what a wilderness it is… 

The other day I stumbled upon a journal entry I wrote when I was 19 years old. I had all but forgotten about the dream – but somehow I had the presence of mind to write it down over 20 years ago. In my dream I was travelling in a forest heading to some place important, but I couldn't put my finger on where. I also had a wife and children but I couldn't see their faces and I didn't know their numbers, yet I knew they belonged to me and me them. Each of them was carrying picture frames. As we made our journey through the thick forest, at some point I realized someone was missing and I began to desperately search for my child. I was in a panic, and then my dream ended.

As I read my journal entry I lost my breath. I am now beginning to understand the meaning of that dream so many years later - and I can’t help but contemplate what God was trying to tell me about my future. He spoke to me, and I listened … and I wrote it down… but I didn't understand it. If there is one thing I've learned in my own journey; it is one thing to receive a personal revelation (or answer, or warning) but quite another to understand it. 

I have discovered that while navigating my wilderness I must learn to rely on my spiritual hearing, not just spiritual sight. And learning to hear is a delicate and personal thing – borne of personal acquaintance. 

Suppose I told you outside there were 2,000 mothers – one of which was mine. And say I blindfold you and told you to find her. I could describe her to you; I might say she’s 5.5, blonde short hair, a beautiful smile and kind voice. If I sent you out there to find her ---- you couldn't do it. Yet if you were to blindfold me I could find her in minutes. Why? Because I know her voice. So it is with God. 

I am still navigating the wilderness of grief - almost as if blindfolded. But I have ears to hear. And while I may stumble and fall to my bruised knees in sorrow, I will get up and follow that voice that whispers ever so gently. A voice that is so quiet that if I’m preoccupied, I may not hear it at all. 

One day, at the end of my wilderness, when I have learned what I must, I know I will see my son again. Only this time I will hold Mitchell’s face not in sorrow but in deep relief … for I will have closed the loop on that dream I had so many years ago; I will have found my son who was lost from my sight. And I will thank my wilderness for teaching me to hear my Father’s voice … a voice that is leading me home. I hear Him.

WHAT’S ON THE OTHER SIDE

As death circled about, Mitch began to sense the end was coming and started asking questions. Natalie and I did all we could to comfort our son and answer him honestly and compassionately while at the same time not frightening him. 

One evening, while he was home on hospice, Mitch and I were in our little movie room in the basement making popcorn. Mitch sat in a chair next to me because he just wanted to hang out. At one point Mitch pointed to a carbonation machine standing on a counter-top that turns water into soda. Just before he was admitted into the hospital he tried a drink from that machine for the first time. He asked me, “Dad, is that what hurt my heart?” My heart fell to the floor as I slowly knelt down and looked him in the eyes and said, “No, son. I would never let you take anything that would hurt you. Your heart is broken because of Duchenne Muscular Dystrophy. Your heart is a muscle, just like your arms and legs, and it is getting weak because of DMD.” A look of sadness came over his face as he tried to come to grips with some harsh realities. There was a little boy who just wanted to live and love, to raise a family of his own and to be a dad. None of that would happen for him. 

I simply didn't know what hard was until I had to tell my son he was going to die. Every conversation I once thought hard is but a shadow now. A whimper.

Not long after my tender conversation with Mitch, Natalie came into the room and he started asking more questions about life and death. Natalie knelt down and hugged Mitch gently. My little boy leaned his head on his mommy’s shoulder as she comforted him in ways only a mother can. I had to turn my head so I could wipe the tears from my face. Tears that were streaming down my neck.

Over the coming days Mitch would ask questions about what’s on the other side. It is one thing to talk of life after death in church or in the abstract, it is quite another to come face-to-face with it. Death is bewildering. 

As Mitch and our family journeyed through the dark wilderness of fear and loss we had strong impressions that so much more was happening. So much more than we realized. Mitch felt it. Natalie felt it. I felt it. Each independent from one another. Mitch talked about his impressions and quiet whispers to the soul. On a few occasions I shared with him some sacred experiences I have had in my life that have shown me there is life after life. I don’t need to rely on anyone’s beliefs – I know for myself, independent of any external source. I looked Mitch in the eyes and bore my soul to him and assured him that we are not alone. The spirit of those conversations were almost palpable.

I wish such a knowledge lessened the pain of loss. It doesn’t. Although I know some things for sure, that doesn't keep me from missing little Mitch with all of my heart. I long for my son like a weary traveler thirsts for water in a barren desert. It is that longing for him that drives me to live a life such that I might see him again.

In my life’s journey, I have come to understand that to know what is on the other side requires a change from the inside. Though I know certain things to be true, I still have a lot of work to do – so many things to change and mend because I am human, deeply flawed and the most broken of all men. But I try. God knows I try. I pray that I never get swallowed up in pride and lose sight of what’s on the other side.

As I wrote not long after Mitch passed away, “There is a place beyond the hills I cannot see. A place my little boy waits for me. I run to him.”

A CANDLE IN THE WILDERNESS

I took this photo at the cemetery one evening as I was writing about my son and our family’s journey through the wilderness of grief. I have spent some critical time thinking about Mitchell’s Journey of late … what it is and what it is not. I hope this blog, for as long as it exists, is a place committed to honest and sincere reflections on hope, healing and finding happiness. I hope, also, it is fearlessly committed to telling the truth about sorrow and its many setbacks. The truth is, the journey of grief is not an intellectual journey nor is it a linear sequence of events and you're done. Grief is a tangled ball of yarn. 

Though this page began as a quiet account of my son’s journey with Duchenne Muscular Dystrophy it took an unexpected turn as it documented his death, our family’s journey with grief and now explores past experiences we had with our son. Perhaps what’s most interesting about Mitchell’s Journey is the vast majority of its followers are not afflicted with any disability at all but are somehow finding meaning with their own journey through life. My wife and I have been deeply touched by the private messages from others, who come from all walks of life, and have shared their story and how Mitchell’s Journey has helped them in one way or another. The moment someone decides to make a course correction in their lives, to love more intensely, to forgive more freely, or to live more fully, Mitchell’s Journey goes from cyberspace to real space – and that is well enough with me. 

Though I write of deep grief, I do not live in a constant state of grief. Healing is happening. But healing hurts and I write of that, too. The hardest stories have yet to be told – and I will write them not because I'm stuck in those moments, but because others may be encountering those very moments at this moment. Perhaps those reflections will serve as a candle to others as they journey the dark wilderness of grief. 

Among the recurring themes of Mitchell’s Journey are discussions of faith, making sense of sorrow, and reflections on love and loss. I suppose one could add to those themes the singularity of grief, that after all is said and done, the journey of grief is travelled by one. Although nobody can do that work for us – just because we must carry our grief alone, we need not walk alone, nor does the wilderness need to be completely dark. I have seen many of you respond to others who post on Mitchell’s Journey and are hurting – and each of you who do so become a candle in the wilderness. I think that’s beautiful. 

I am still a bit surprised, at times, how lonely the journey of grief can feel. I have found that people can do or say things that might complicate the healing process were I to allow it. Some, speaking from the depths of their own pain have said things like, "just be glad you had 10 years and not 10 hours" or some who have lost a spouse say "at least you have/be grateful that you have your wife to lean on" and a million other variations of a familiar and insensitive theme. Rather than taking offense at their volley of sorrow, or comparisons of grief, I just recognize these people are still deep in their own wilderness. I don't know their sorrows any more than they know mine – I only know grief is a heavy burden for all who bear it. I only know they hurt and I wish it weren't so. 

I hope for as long as I live I can be a candle in the wilderness. For I have discovered the wilderness is vast and deep and exceedingly dark at times. I have also discovered what a little light can do.

The truth is I don't know what I'm doing here. I’m not a writer or a public speaker or anybody of significance … I’m just a daddy who misses his son with all of his heart. But as long as I have a heart, I will share it … because where there is love there is light and where there is light, there is hope. 

To all of you, who love and lift others and have become a candle in the wilderness, shine on.

IT’S NOT WHAT YOU SEE, IT’S HOW YOU SEE IT

We had just gone to the mountains to take some family photos. This was the day we took our last family portrait, save the one taken by a dear follower 2 days before Mitch passed away. That was a family portrait of a different caliber – one that we reverence. 

I generally avoid posed photos because I much prefer raw captures of life unrehearsed. Besides, nothing is more fatiguing to others than to have someone say “Okay, everyone stop what you’re doing and look at me so I can take a semi-candid photo of you smiling.” I would rather photograph someone laughing at the dinner table, food-in-mouth, than take a staged photo where hair and makeup are perfect but illusory. Over the years I have captured tears and triumphs, sadness and glee … moments that are difficult to look at and send me to my knees. But these images are my life, they are what I see – and I will always take them unapologetically.

So, on this day, for some reason we felt it important to take some family photos and I am glad we did. What you see here is a photo of me taking my daughter’s portrait on the left, and the exact photo I took on the right. I was unaware Mitch had another camera trained on me and he took this photo of me taking a photo. Mitch had seen previous images I had taken in Nicaragua where one of my colleagues took a photo of me taking a photo and I had done something similar to what you see here. I remember pointing to that Nicaragua photo set and saying, “Mitch, can you see what a difference perspective can make?” I continued to tell my son that so often with life it isn’t what you see, it’s how you see it. Mitch, having seen what I had earlier done tried to recreate that same juxtaposition. Well done, son. I miss you.

I have always wanted my children to learn how to see with their true eyes; to understand a fundamental truth … that so often it isn't what we see that matters, but how we see it. So much of what plagues humanity, it seems, is seeing things from a single, myopic perspective. There is a saying that goes, “Those that hurt others, hurt.” Perhaps the solution to those who compulsively gossip, who say and do harmful things isn't to retaliate in-kind, but to recognize they are hurting, too, and seek to discover the sliver in their soul that is causing them pain. And if we’re listening, if we stop looking only at what we see on the surface and change how we see, perhaps we can truly help others. I have discovered the best way to disarm someone is to love them.

It’s not what you see, it’s how you see it. In the case of these images, neither are wrong, they just tell a different story. And although this photo is not of my son, one of these photos was taken by him and tells a story about my boy – what he chose to see. So, this image serves as a reminder to mind my perspective, always. 

I can chose to look up on the death of my innocent son as a horror story and raise my fist toward God. That act of defiance will not change a thing, nor will it change Him; instead turning my back toward my Father would change me … even poison me. I know that there is a greater plan at work, so I will endure whatever lessons patiently. I just wish it didn't hurt so much. Yet, I sense there will come a day that I will yet see my sorrows differently. They will no longer be the source of my heartache, but the contrast needed to truly appreciate that sacred reunion with my son; for I cannot know great happiness without knowing great sorrow.

As I travel through my wilderness of grief, I will always look to the heavens to find my way. I will search for, count and chart our tender mercies as an evidence of God’s love – despite what we are asked to suffer. And though I am certain to see more sorrow in the years ahead, I will remember that it isn't what I see that matters, but how I see it. 

Thank you Mitch, for taking this photo and reminding me so poignantly.

WALKING ON JUPITER

A few weeks ago I walked by Mitchell’s room and noticed through the half-opened door his mother sitting on his bed with a look of sorrow and a longing for her little boy. She had a pain in her countenance only a mother who lost a child could know. As I quietly walked toward the door my eyes blurred and I stumbled over my heart as it fell to the floor. 

Without making a noise I took this photo with my iPhone and disappeared into the shadows so she could have her moment uninterrupted. My wife sat on his bed deeply contemplative – stripped of a tender child she loved with all her soul. I could only imagine what thoughts were crossing her mind as she sat in the very place we tucked him in at night, where we gave him hugs and kisses, had long conversations, and played video games. This was the very place we held our son’s hand weeping that we couldn't save him from death and telling him we were so very sorry; the place he said “it’s okay mommy.” This was the place our precious son passed away in the deep freeze of a winter night while his faithful puppy had curled around his head as if to comfort him.

I’ll never forget that night … the night Mitchell passed away. I can still see her kneeling on the edge of his bed as she draped over him sobbing, hugging him, holding his lifeless hand … wishing he wasn't gone. That was the day my wife and I left earth and took up residence in an unfamiliar place. That was the day our world changed.

There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief. 

There are many well-meaning people, as if to throw an emotional lifeline, who try to remind us life is but a “speck” in the eternal scheme of things. Or that they’re sorry for our “temporary loss” as if the wave of a hand and a simple utterance will assuage our sorrow. And while I understand the eternal nature of the soul – being mortal, life is the longest thing I know. The years ahead seem to stretch out into infinity and seem so very long without my son. I miss him terribly.

Jupiter, with its crushing gravity, is home. At least for now.

Author Bill Bryson said his book A Short History of Nearly Everything, that the universe is not only larger than we imagine, it's larger than we *can* imagine. When I read his words, that very notion blew my mind. To consider that the universe is so big that we don’t have the capacity to comprehend it … it gave me shivers. Bill Bryson’s comment reminded me of a passage in Isaiah where God said “My thoughts are not your thoughts, neither are your ways my ways …. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” 

While walking on Jupiter I have learned that to have a knowledge of God (even a relationship with Him) doesn't protect us from pain and sorrow - but it can give meaning to pain and suffering. 

One day my heart will leave Jupiter for a better place. Between now and then, the gravity of grief is a necessary crucible of growth. After all, it isn't our bodies that need to grow, but our souls.

And as I gaze into the night sky and contemplate the sheer immensity of space and mankind’s utter nothingness in the context of the universe – I feel a whisper in my soul that we are the reason all of that was created in the first place.

THE INVISIBLE HOURGLASS

Yesterday marked one month since Mitchell passed away and three realities have become very clear: 1) grief is bewildering 2) there are no shortcuts for grieving the loss of a child, 3) it is the hardest work one will ever do in this life. I think it’s also safe to say, no matter how hard the road has been till now, the easy stuff is behind us. It would seem that what lies ahead is more difficult still. 

In our home are the remaining flowers from Mitchell’s funeral. The fading beauty of each arrangement stands as a reminder that life is temporary and time waits for no one. While we cling to the flowers as a symbol of all that we loved and lost, they stare back at us unapologetically withering away. Looking back I can see that the days and hours we had with Mitch were more precious and few than even I had anticipated. As much as we would like turn time back and savor those fleeting moments we had with our boy, we cannot. And wishing won’t make it so. 

When we took Mitchell home from the hospital we were given invisible hourglass. Doctors couldn't tell us exactly how much time we had, they just said "soon … very soon." With that we rushed out the door terrified of the unknown and did all in our power to love our boy and make his final days happy and full of love. Every day was a blessing, for we had our boy a little longer. Every day was a burden because we saw him slowly die.

A few days prior to his passing, Mitchell started to sleep more. His organs were shutting down and sleep was his body’s only way of preserving energy to survive. Throughout the day and into the night he would periodically wake and ask what time it was. Mitch became increasingly sad and frustrated when he realized that the days were slipping through his fingers and he was not able to enjoy the time he had. This broke our hearts and we would have done anything to trade places with him. 

I remember as a young student one of my professors placed a saying above the clock on the wall that read: “The time will pass … will you?” It was a humbling reminder to me that no matter my preoccupation with getting through a grueling test, lecture or enduring some hard experience, time was on a fixed course and the only thing I had control over was me. I used to think to myself “if I can just get through this thing …. then all will be well” … as if simply gritting my teeth and waiting out some hardship were enough. I learned later in life that enduring difficulty isn’t as important as enduring it well. 

A month ago my son’s hourglass has shattered to the earth and the sands have since blown away. Like never before I have become keenly aware that I have hovering over me an invisible hourglass of my own and I intend to make the most of whatever sands remain.