It was a year ago this very evening (almost to the hour) I received a call from Mitch who was in bed for the night. I was in my basement office when he called from the home phone to tell me his heart felt strange. Immediately I dropped what I was doing and ran to my son. When I first laid eyes on him I saw nothingness in his face. Upon seeing him I quickly scooped him in my arms as he came to. I remember thinking to myself, “[Please] … not like this. I’m not done with you, little buddy.” It was then that I felt the heavy, cold breeze from the abyss that was inching to devour my son. I could almost feel the ground from under him crumbling and it was then I sensed the true depths and darkness that was lapping at my son’s feet. Death was coming and I didn't know how to stop it. Within a week I would come to realize that death wasn't at our door but in our home lying in wait.
I stayed with Mitch a while to reassure him and to let him know I loved him. I tucked him in nice and snug, kissed his face and took this photo of his sweet smile. We talked about his Minecraft base and other things on his mind. He knew I was recording our conversation and he gave me a sneaky smile. He was as perceptive as he was innocent and sweet. I knelt by his bed and ran my fingers through his hair and said, “Son, people spend their lives in search of treasures. They go to the ends of the earth; they sometimes kill each other or themselves in search of it. They drain oceans and level forests in search of treasures … treasures that don’t last. But I have the world’s greatest treasure … and that is my family. You, son, are one of my greatest treasures. I want you to know how much I love and treasure you.” He smiled and snuggled his head deep in his pillow and drifted to sleep. I miss him.
Once Mitch was sleeping I went to the kitchen and wrote what happened in his event log. A few months prior we started documenting events and irregularities in search of patterns - there were none. In fact, nothing like that had happened before and I didn't know what to make of it. I didn't realize this small tremor was a prelude to a biological earthquake that would strike a week later and send my son into a death-spiral of end-stage heart failure.
The original post of this event can be found here: https://www.facebook.com/photo.php?fbid=612458198783845&set=pb.192859897410346.-2207520000.1390160799.&type=3&theater
Until this night I didn't recognize this was the beginning of the end. I just did what I always did … I looked him in the eye and told him I loved him. Never a day passed that I didn't tell my kids how important they were to me. … how important they are to me. We spend our lives making sure they’re bathed, fed, clothed and on top of their homework … but I think kids should also be fed with love and clothed with confidence.
Why do we wait for someone to die before we eulogize them? Why do we withhold words of affection, commendation and admiration as if they were scarce commodities? Sometimes, at funerals, the nice things we have to say are said too late. And I get the sense, that for whatever reason, some people die a little inside each day – and a loving observation or a word of encouragement can be just what someone needs to breathe new life into their life. It’s been my experience that as long as I’m truthful and sincere with others, telling them what good I think of them never gets old and is always appreciated.
I said nothing at my son’s funeral that he didn't hear a million times from me. I didn't want him to go a day without a sure knowledge he was loved and treasured. And I hope that whatever thoughts crossed his mind as he was slipping from this world into the next that he knew how much he was loved and treasured by his mom and dad. I hope my son had a sure knowledge I could search the seas, the mountains and trees and never again find a treasure quite like him.
Though I can no longer hold my son, my treasure, as I once did he has made my life richer and more meaningful. Children are treasures that last.
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.
When The Parent Project MD asked for permission to use one of Mitchell's photos for this white paper I was and continue to be very supportive. However, I wasn't prepared for my emotional reaction to seeing this particular photo. It was, and remains, difficult to look at because our little son's heart was failing and we felt so very helpless.
At the moment this photo was taken Mitchell had just finished one of his last Nerf gun battles with his best buddies. His loyal friends called him “commander” and listened to his strategies and followed his lead. It was so cute to see. Mitch wanted so badly to be a little boy and do what little boys do. It wasn't long before he became faint because his blood pressure was so low and his body so weak. This photo shows his mother holding and reassuring him when he hardly had the strength to stand. All the while Mitchell kept pushing himself up because he just wanted to keep up with his friends. He wanted to live. He wanted to thrive.
So while this photo is hard for me to look at, it is necessary and it is relevant. Life has a way of dishing out hard things and often there's little we can do about some of the difficulties we encounter. But we can choose how to respond to hard things, to rise above them and use those difficulties to help others. And if Mitchell's story can help save lives and heal hearts (physically, emotionally or spiritually) we will do all in our power to help.
On June 29th we will be speaking at PPMD's International Conference in Baltimore. We've been asked to share Mitchell's Journey and help put a face and story to cardiac challenges related to Duchenne Muscular Dystrophy. Putting patients first – a worthy endeavor. That is the goal of PPMD, and it is our goal to do all in our power to help them.
Mitchell's Journey hopes to personify the many challenges that surround DMD ... because they are real, and they hurt ... and they kill. In the end, we hope Mitchell's Journey can point to hope, healing and finding happiness - no matter our individual hardships.
http://community.parentprojectmd.org/profiles/blogs/putting-patients-first
“I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal. A part that loves deeply and hurts honestly. Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating. ”
My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death.
For Mitchell, touch was very important to him. There was no blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today and my heart sinks to the depths of my soul that I cannot.
Within a few days of this photo Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted …
I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.
Over the last 2 years I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy he never varied. I found it fascinating that a child so young was so attune to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about play things and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.
I was raised to accept the reality life is tough, because it is. And at some point the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal. A part that loves deeply and hurts honestly. Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating.
Three weeks after this photo was taken Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped.
I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are an emotional mirage. My son taught me there are no lions or bears, only humans. And to pretend otherwise is to cheat ourselves.