The funeral director told us it was time to close the casket and suddenly I gasped for air and tried to hold back my tears - but nothing could stay my sorrow. This was it. I wasn't ready to look upon my son for the last time – to say goodbye to his little body, his sweet face … this little boy I used to cuddle, hug and laugh with. My youngest son, Wyatt stood beside me and watched me in grief and sorrow tuck his older brother one last time.
I carefully pulled Mitchell’s favorite blanket up to his chin, like I did every night, and said “I love you little boy … my sweet son. Oh, how I love you.” I cried a father’s tears … and until that moment I had tasted no deeper tears. I had never known so great a sorrow as to say goodbye to my child. Sweet Mitch trusted that I could keep him safe from harm. He thought there wasn't anything I couldn't do. When he looked at me he saw superman. When I looked in the mirror I saw a broken man. But I tried. God knows how hard I tried. But I was only human.
Months later, my oldest son, Ethan, came into my office while I was writing an entry for Mitchell’s Journey. I was unprepared for the interruption and my eyes were red and filled with tears. Ethan asked, “Dad, are you okay?” I immediately tried to be superman and put on a brave face, wiping my eyes and said, “Yeah, I’m okay” … as if to suggest all was well and that I was simply rubbing my tired eyes. But Ethan was discerning and knew better … I could tell by his expression he knew I was grieving.
In that moment I thought to myself, “What good do I do my children when I pretend?” I realized I do him no favors when I am not being real. I paused a moment then looked Ethan in the eye and said, “Actually, I’m not okay. But I’m okay. Do you know what I mean?” Relief washed over his face and I could tell he not only understood but that he was glad I was being real … as if it gave him permission to be real, too. I wanted my son to know that it is okay to hurt … that you can be “okay” but “not okay” and that’s okay.
Ethan and I talked about Mitch for a while and he shared some of his sorrows about losing his younger brother. We both cried together. I hugged Ethan and let him know how much I loved him – every bit as much. We crossed a threshold with grief that day. My son knew it was okay to hurt and that pretending otherwise serves nobody, not even ourselves. To the contrary, we do a great disservice when we pretend.
I had a moment of truth a few years prior when I read the words of an 18th Century French writer who observed, “We discover in ourselves what others hide from us, and we recognize in others what we hide from ourselves.” When I read those words I vowed to retire my masks and get real.
I've tried to have similar exchanges with my other kids. My children, each unique, process their grief differently. And that’s okay, too. In all things I want to be real with them – for it is when we’re real that we become equipped to deal with real life.
I am still walking on Jupiter. The gravity of grief is great. The air is thin and my tears fall as generously as spring rains. Yes, I have moments of sweet relief and happiness is returning – but grief and sorrow linger. I cannot run from sorrow any more than I can run from my shadow on a sunny day. I must learn to live with love and sorrow – there seems no other way.
I’m okay … but I’m not okay … and that’s okay. That is part of being human.
Mitchell’s funeral was a year ago, tomorrow. I have done a lot of public speaking in my life and there was no address more difficult than speaking at my son’s funeral. Although a year has passed, my knees still shake and my hands tremble from grief.
On the day of his funeral I couldn't believe all that was happening – everything was surreal. The months following I would awake each morning with feelings of absolute horror and breathlessness. I would scramble out of bed in a panic hoping that somehow everything was an awful nightmare. Some mornings, half awake, I would run to his room only to discover it empty- then fall to my knees in utter grief. Not a day has passed that I haven’t wept for my boy. Although I feel an increase in peace these days, I still cry and I still grieve. I think I always will.
It wasn't until we took Wyatt to a Grief Camp last fall that I realized how individual grief truly is. Although my wife and I could love and guide our 7 year-old son through his sorrows, his pain was his alone to process. I couldn't do that work for him … no more than anyone can do the same for me. Later that night I wrote in my journal “After all is said and done, grief is a journey traveled by one.”
I have discovered managing the grief of losing a child is incredibly complex. How does one save another from drowning when they are drowning themselves? As a husband and father I have sometimes found myself hanging by a thread, desperate to tread, while trying to process my own sorrows. I have sensed that grief, if not managed, could easily swallow me up. Yet I know there is more to this equation of sorrow than me. At the same time I see my sweet wife, who aches just as much as I do, and also in ways I do not know – for I am not a mother. I reverence her sorrow more than my own. On top of our mutual grief, I have my other children who each hurt in their own, real ways. I must also care about their sorrows, too.
To be clear, I am not drowning in grief – though I tread its waters and I can tell they are deeper than deep.
I am learning new things about grief every day. So far, I have found if I set aside my sorrows, even if only for a moment, and try to lift and love my family who also hurt, somehow I hurt a little less. Oh, I still hurt - but just a little less. Therein is that heavenly paradox of which I've earlier wrote … that the only way to save ourselves is to save others.
Yet, after all is said and done, grief is a journey traveled by one.
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.
We had just arrived at Primary Children’s Hospital and sensed things were serious, that we were running out of time and we needed to hurry. Natalie began the process of admitting Mitch as I pushed his wheelchair to the waiting room. I sat across my little boy and started to talk to him. Over his shoulder I saw my sweet wife taking care of the paper work. Mitchell’s breaths were shallow and he grew pale as the minutes continued.
I couldn't help but notice the paper hearts attached to the wall behind the receptionist. I was reminded Valentine’s Day was approaching and I began to contemplate the many layers of love. I thought to myself how sweet and tender Mitchell was and how deeply I loved him. The moment my wife told the front desk Mitch had DMD and Cardiomyopathy and we suspected he was in heart failure, they immediately dispatched a nurse to check his vitals. Within less than a minute they rushed our son past everyone in line. Things were more serious than we thought.
As we sat in the examination room I recalled a saying I had seen throughout the hospital that said, “The Child First and Always.” That phrase always brought me some level of comfort but it was then I realized this was no slogan – that, in fact everyone at the hospital truly cared. As things escalated, doctors and nurses gave our son tremendous care and attention. It was clear my son wasn't a number on a patient file; he was a little boy with feelings and they knew it. Though medically broken, they treated him like a little boy who loved, played, wondered, and hoped. This wonderful medical staff gave us a dose of compassion, which is medicine for the soul.
I cannot help but feel intense emotions when I see this image … for I see my sweet wife fighting like a lion to save our boy. I see my tender son who was in so many ways my soul mate – only he was the greater soul. He was my teacher. Mitch, a gentle as anything I know and was slipping away. My little boy who was broken and would soon lose everything – if I could only go back to this moment and love him even more.
Perhaps one of the hardest things with grief is wanting one more. What I wouldn't give for one more hug, conversation, kiss, or cuddle. What I wouldn't give for a day. An hour. A minute. How I would spend that time differently. When I see this image I feel great pain because my son is gone and I want him with me. But I also feel an even greater love. It is a funny thing that love is both the source and solution to our pain. I am in pain because I love him. I am healing because I love him.
Mitchell’s Journey has taught me life is a story and we are the authors. Only we cannot pen what happens tomorrow, we can only write the story one step at a time. I am beginning to see my son came to earth broken so he could teach me. I am no teacher. I am just a student with a heavy backpack. But I am taking notes. I am listening and am learning.
Tonight my wife and I will take our kids to The Olive Garden in honor of our little boy. We will spend time as a family because family is what we love the most. We will laugh, we will smile, and we will remember.
I don’t know what tomorrow will bring, but with each step I take I will write my story … and mine will be a story of love.