It was difficult to get Mitch to eat. His appetite took a significant dive mid-December and with few exceptions it never really returned. His perfusion was so poor that, even if he felt like eating, his digestive system couldn't handle much of anything. Toward the end my son would throw up whenever he ate. That was so hard to see. His body, already weak and frail, struggled to recover after each violent episode.
Natalie had prepared some soup for Mitch and I asked if he wanted to eat in bed. This time he wanted to walk to the kitchen so I held my sons hand as we carefully made our way. He was tired but determined to be independent as long as possible. I love him. Mitch arched his back as he walked to keep his balance because DMD had already stripped his strength away. He was getting so frail and his interaction with the world increasingly brittle.
Ever since he was a tiny little boy we had a very special manner in which Mitch and I held hands. As I softly held his hand escorting him to the kitchen, he moved his hand to hold mine in our special way. The lump in my throat, which never seemed to leave, began to grow. I smiled softly at him and put on a brave face but inside I was falling apart.
Mitch didn't get sick this day – for which I was grateful.
As I looked at my little boy I couldn't help but see something else. I saw my brother. I didn't see someone who looked like one of my brothers, I saw a little boy who was my brother. Toward the end I saw in Mitch things that startled me … I will write of those another time.
I have spent much of my life contemplating the age of a soul. How old are we really? No one really knows, I suppose … at least not here. But when I am quiet and thoughtful I get a sense we are older than we know. And when I think of my son, my brother, I get the recurring impression I am Mitchell’s younger brother and that he was teaching me.
I remember this moment as if it happened yesterday.
It was November 9th, 2012. We had just left the hospital and we were faced with the mounting reality things were not going well for our son. Sensing things were deeper and more perilous than we knew, I asked our cardiologist that day at what point Mitchell’s condition was beyond his experience. He paused, thought a moment, and then said he was on the very edge. We asked that his case be handed over to the transplant team for consideration – and we were scheduled to meet with them two weeks later. Knowing my son’s diagnosis would was almost a non-starter we gave it our best shot anyway; we had high hopes, but low expectations. Mitchell was denied.
As we drove home that evening the sun’s warmth flickered like a candle against the cold November wind. Any glimmer of hope or a way out seemed to set with the sun. Everything was getting darker and I sensed we would soon face some cold realities regarding our son. As we left the parking lot I remember looking to my wife who had a look of controlled panic and deep concern. This was the day we first walked on Jupiter. Everything seemed heavier … the sky was strange, the air was thin … everything was alien. By the time we arrived home the sun hid its glimmer behind the hills and the sky seemed especially dark – as did the sorrow in our hearts.
“... on that day I journey to that place beyond the hills, that place my son lives, that place I now long to be – I will see with new eyes there was always light … only light I could not see.”
We prayed a lot that night and every night thereafter. We earnestly sought a way out. Hardship and darkness came to us despite our heavenward pleas. As Mitchell’s health deteriorated the days grew darker still until the night my beautiful boy passed away - when nightfall had truly come and everything was darkest. I will post that essay “Nightfall” another time.
Perhaps the more tempting and punishing aspect of grief is looking back and entertaining the endless, taunting list of “what ifs?” That unreasonable list of things you could have done or should have done … where everything seems obvious under the light of hindsight. But that list of “what if” is counterfeit.
I have a colleague with whom I work who often makes reference to Einstein’s “circumference of darkness.” Einstein puts the case boldly that as our knowledge expands, so does the circumference of darkness that surrounds it. What’s more, my colleague wisely points out, when exploring new territory “we don’t know what we don’t know.” Such was the case for my wife and me as we stumbled and fumbled and did our very best to love and care for our son.
Even still, I look at photos of my son last year at this time and it feels like yesterday … yet at the same time a world away. I want to jump into those photos, back in time, and hold my son like I never have and look him in the eye and tell him how much I love him. I would have drunk the moments in more deeply and I wouldn't have wasted a second. That is what I tell myself. Yet today, being human, I still waste my seconds and opportunities pass me by. But I try. God knows how much I try. And that list of “what ifs”, however counterfeit and scattered with lies, remains glossy and deceptively wise.
But I know better. We were true. We did the best we could and all we knew to do.
At some point during my struggle of the soul, when everything seemed darkest, I felt a spark of light … a flash of insight that came rushing to my mind. It occurred to me that God almost never delivers us from our sorrows, but He will deliver us through them and we will be all the better because of it. I began to wonder how often, because suffering doesn't always ease, we confuse God for not listening to our prayers when in reality we’re the ones not listening to Him. Neither do we look. Sometimes it is dark only because we close our eyes.
Finding light in dark places; it is easy to say from the sidelines and sometimes it’s bewildering to do. But I have learned in darkness that God is there beside us, it's true. And on that day I journey to that place beyond the hills, that place my son lives, that place I now long to be – I will see with new eyes there was always light … only light I could not see.
Mitch was only home a few days when he asked his mom if he could have an early birthday party saying his real birthday felt “so far away.” Somewhere deep within him, Mitchell knew. His intuition, his true eyes, were beginning to sense something bigger was afoot and the little boy in him wanted to be a boy … just a little longer.
His early birthday was such a treasured experience. We enjoyed seeing some of his closest friends celebrate his birth, life and friendship. Mitch was a humble and broken king for a day. While uncomfortable with all the attention he was getting, he enjoyed his time with his friends, his favorite chocolate cake from Costco, and pizza. An old missionary friend of mine, who had love and compassion in his heart, arranged to have the mascot for the Utah Blaze come to wish him a happy birthday. Little Mitch loved that. He wore the Blaze scarf he was given and held on to the autographed helmet all night. And many of you, his compassionate followers, wished him a happy birthday with loving Facebook posts, cards and gifts.
As his friends gathered round him to throw confetti in the air Mitch quietly smiled. He loved his friends, and they loved him. But something was happening within him and I could see it in his face. His adult soul was quietly emerging.
That evening my sister gave Mitch some helium balloons that had little glow sticks in them. They hugged the ceiling like florescent zeppelins as his room looked like a dimly lit moonscape. As my wife and I tucked him we told him how wonderful he was and that we loved him with all of our hearts. His eyes filled with tears as he told us he loved us, too. Our son drifted to sleep feeling loved. And of all the gifts we could give him, love was the most important. Yet I knew in my heart there was no gift I could give my son equal to the gift he was to me.
As I crawled into my own bed Mitchell’s birthday played back in my mind like a home movie. My heart was full but my soul trembled that night. I heard my son’s voice in my mind over-and-over: “My birthday feels so far away.” I marveled how a young boy could have such a distinct impression. He didn't know the details, but he had a sense of things. And often, a sense of things is all we ever get and we must do the spiritual work of understanding the meaning of it all.
Mitchell’s impression was not an isolated experience. At a later time I may share some other things that happened; things that showed me that all that is out of mortal view is, in fact, not so far away. It is closer than we know.
I have been taught that inasmuch as we serve each other, we are also serving God. So, I am deeply grateful to all of you who served my son by lifting his troubled heart. Your gift of love to him was also a gift to his parents. From the depths of our hearts, we thank you.
This little boy, who had to walk a lonely road, felt a little less lonely this day. And for that, I am grateful.
I remember sitting under the stale, moldy wood of an abandoned tree fort deep in the back-woods of Minnesota. It stood high in the trees like an ancient ruin – covered in summer moss and swaying softly in the breeze. I was a young boy, about Mitchell’s age, and finding such an unexpected fort was magical. It became a place for us to disappear from the world … to dream of things and imagine the future. One summer, while sitting in our fortress in the trees, my friend and I asked each other what we would do if we only had a day to live. That was the first time I can remember asking myself that question. Being young and easily entreated we would talk of shopping sprees, all-you-can-eat candy, and driving Ferrari's.
Even in college I remember stumbling across that same question with friends. Our answers were different then – but the question remained.
Fast-forward about 20 years and this reality barged its way into my life like a terrifying home invasion. As far as we were concerned Mitch was home for a day and might die at any moment. So we lived each day as though it were our last because we couldn't afford not to.
For 28 beautiful but agonizing days, we thought Mitch was only home for a day.
My daughter took this photo shortly after Mitch came home. Moments prior he had reached out to hold my hand, our fingers interlocking and asked in an almost-whisper, “Dad, will you sit by me?” I remember him snuggling his face up to mine. I can still feel the warmth of his skin on my face, his shallow breaths on my chin, and his love bursting in my heart. Sometimes, when I think back on this moment, I reach to my face as though I could touch his – but then the dream ends and he is gone.
I’ll always remember how he snuggled up to me; I just closed my eyes and wished that I could freeze time or that I could steady his failing heart. At that moment I didn't know that Mitch was smiling – I only knew we loved each other. And that was enough, and more.
Home for a day: it was a wonderful blessing and a terrible burden. This experience was (and is) so difficult to endure. Eleven years ago my tender son didn't exist, and I was quite content without him. But now that I've had him I cannot imagine a life without him; and here I must find a way. I pray to God that my heart finds a way.
Mitchell taught me to appreciate each moment as though it were my last. I don’t mean to sound so dramatic as to peer dimly through the window of a funeral home, living each moment in fear of death. What I have come to understand, with exacting clarity and regardless of circumstance, is moments are fleeting. The moments I had with my kids last weekend are long since passed – I don’t get to go back there.
So whether I face death or more life, each moment is my last.
All too often I hear about the perils of distracted driving – but I wonder how often we think about distracted living. Perhaps being distracted is the root cause of much of our troubles.
Mitchell, being home for a day, taught me to remove the distractions that would seem to take life away from my life. And when I removed the distractions and lived in the moment, rich were the blessings and treasured the memories.
A strange illusion, indeed, to think that breathing is living.