A few years ago little Mitch was undergoing some routine stress tests to determine if Muscular Dystrophy had affected his breathing muscles yet. Even though he appeared normal at the time, DMD was on a steady course to take away his ability to walk, use his arms, breathe and eventually destroy his heart. And while DMD destroyed my son’s biological heart first, it never defeated the goodness of his heart. He was a kind, loving and grateful little boy to the very end. And while my heart has been broken I will learn from my son and never let it become hardened.
From the moment Mitchell was diagnosed to the day he passed away I made a personal commitment to be there for him, every step of the way. I wasn’t a perfect father, but I did my best to be a good daddy. And even though I stumbled and fumbled time and again, for Mitchie, he only saw that I was trying and that seemed to be good enough for him.
In this photo Mitch and I were fully engaged in hospital shenanigans. I was supposed to be in a waiting room but instead I walked down the hall and sought him out and started sneaking shots. I’ll never forget his giggles and smiles as I would pretend to be stealthy. The medical technician was kind enough to play along and pretend she wasn’t aware of me. That made the artificial tension and humor even more fun. In my son’s young eyes, all that was happening was real and I was on the edge of getting “busted”.
I had long forgotten about this moment until I stumbled across this photo a few days ago; and upon seeing it the memories came crashing in like a massive wave and swept me off my feet and I wept a potpourri of emotions.
I always wanted to be there for my son, not just physically, but mentally, emotionally, and spiritually. I recognized if we’re not watchful, it is so easy to talk but never really communicate, to hear and not listen, to hug and never really say “I care.” And for little Mitch, I wanted to “be there” in every way possible. And looking back, this moment (and many like them) paid dividends then and continues to pay dividends today. And more often than not, it was being present in the ordinary moments that carry with them the sweetest memories. The conversations in the car, the bedtime chats, drawing pictures together, taking time to watch a movie or play Legos … seemingly ordinary moments, often at the tail end of exhaustion, were when the magic moments happened.
As I looked through this hospital door at my little boy, he knew I was there for him … in every way that mattered. I hope that knowledge helped him in some way when he started slipping away. I haven’t died, so I don’t know what truly crosses one’s mind as they cross over. But I hope, when he was scared, that he reflected on the moments we had together and that little Mitch found peace in the knowledge he wasn’t alone … that he knew we were always “there” for him … way back when to the moment of his passing. And perhaps, at some sacred point in the years to come, a door between this world and the next will open a crack and I can see my little son smiling once again. But if not … I know in my heart I did all that I could to be there. And that will have to do.
As much as he loved water, Mitchell was always nervous about the ocean. I remember watching him walking out into the surf just past his ankles, putting his hands on his little hips and thinking for a few minutes. There he stood with his cute little Star Wars shorts and swim shirt, thinking about the adventure that lay at his feet. The waves were small but still intimidating to him because his muscles were weak and uncoordinated. The cold surf would brush up against the bottoms of his shorts and he would hold his ground and giggle as he wrestled with his watery opponent.
He wasn't that interested in going out much further and I often asked him why – to which he would respond with a half-smile and he would look in the opposite direction. It wasn’t until he was home under hospice care when he finally told me why he was afraid: sharks. When he finally told me I briefly chuckled, then my eyes welled with tears and I kissed his forehead and hugged him and said “Oh, son, how I love you. I would have jumped in front of any shark to keep you safe.” Feeling emboldened by my willingness to protect him, he then asked if we could watch Jaws together.
“Like a swimmer who encounters a powerful rip current, thrashing about and fighting the current will waste energy and pull you to the bottom of the sea. But relaxing and allowing the current to take you, as painful and scary as it seems at the moment, keeps you near the surface and conserves energy for that swim back to shore when the current has passed. Managing grief is not much different. ”
Before I lost my son I thought I could empathize with those who might have lost a child. But I soon discovered I was merely dabbling in phonetics and wordplay and that there is no word in the human language that can adequately describe the pain of that kind of loss. I want my son back so badly sometimes I feel like I’m drowning in a sea of grief and sorrow.
I have become a student of grief and am learning how to swim every day. Along this difficult journey I have discovered that grief feels much like wading in the ocean with its many, many currents: sometimes there are peaceful warm moments, other times powerfully sad undertows, plenty of rain, cold pockets and occasionally crushing waves of sorrow that leave you disoriented and scrambling to breathe.
I have observed others, who grappling with their own profound grief seem to be drowning while fighting the powerful emotional currents. While I am new to this loss, their struggle is intensely familiar to me … and I feel like I know those currents all too well.
At least for me, I am learning to allow the currents of grief and sorrow run their course. Like a swimmer who encounters a powerful rip current, thrashing about and fighting the current will waste energy and pull you to the bottom of the sea. But relaxing and allowing the current to take you, as painful and scary as it seems at the moment, keeps you near the surface and conserves energy for that swim back to shore when the current has passed. Managing grief is not much different.
Before Mitchell passed away our hospice nurse offered council on managing grief. She was quick to point out how some people tend to medicate their sorrows with various addictions. Her council was to allow grief to take its course, in a healthy way. There is no pill, no drink and no preoccupation that can save you from grief. As Robert Frost once said, ‘The only way out is through’. And, in truth, shortcuts are only a mirage.
But alas, all of this remains wordplay. For the truth is, treading the sea of grief is bewildering. It is cold. It is lonely beyond measure. There is more salt in my tears than all the waters of earth. And somewhere out there … far into the horizon, even to infinity, my son lives. Every part of me longs to see him and hug him once more. And as I look to the captain of my soul and swim how I ought, I will find him again. But the sea of grief remains vast … how deep I know not … how treacherous yet, I know not. I only know that I’m not drowning … and for now, that will do.
I didn't always get to take my son to school, but when I did, I loved every minute of it. On this day I was walking him to class and he was so excited to show me his desk, his name tag and where he hung his backpack. Mitch belonged to something … a class of elementary school students and friends … something that was uniquely his and he was proud of it. And I was so proud of him.
As I held my son’s hand on this ordinary day I had no way of knowing in less than 2 short years … years that would go by in a blink … I would hold his hand for the last time as I kissed his tender face and whispered in his ear how much I loved him. My words to him were the last words he ever heard. When I think back on the night he passed away, I have come to know he held on long enough for me to tuck him in and to love and assure him. I am so grateful that I was able to steady his mind and heart one more time.
Between the moment of this photo and the night he passed away I told Mitch I loved him a million times and more. My words to him were never empty sounds but always overflowing with sincerity and feeling. As often as possible, I believe words ought to be felt as well as heard. Not a day would pass that I wouldn't tell him repeatedly that I loved him. The same is true with all of my children.
This look on Mitchell’s face is so familiar to me; his soft smile and loving eyes were often on his countenance. I always tried to be a mirror to him – to show him the same love and affection he so freely shared. The funny thing about love is it’s a contagion. What’s more, you cannot give it away without magnifying love in your own heart. Another heavenly paradox.
When I reflect on the nearly 11 years I had with this little boy, the saying “the days are long, but the years are short” has moved from a saying on the wall to a sobering reality. Looking back, some days were very long … but the years flew by like a flash. My wife and I would give anything to have those long days again … when at bedtime we found ourselves drunk with exhaustion, desperate for a break, or a bath, or bed. To have those moments of fatigue were an infinitesimally small price to pay to love and raise our son.
I love being a father; it is a blessing beyond measure. And I hope that despite my weaknesses, which are many, that I live up to that sacred responsibility. And on that fateful day, when the sun sets on my own life and I journey to that place beyond the hills, I want my children to look back on their lives and know they were told in word and deed how much they were loved … a million times and more.
We just returned from a family vacation that was gifted to us by some generous colleagues with whom I work. While on our trip I took a photo of this sunset on the shore of the Pacific Ocean and wrote in my journal: “Good night little Mitch. You are always on my mind. And while I know you're not lost at sea, sometimes in my heart you may as well be.”
I then posted this photo and that caption on my personal Facebook page and a dear friend wrote: “Consider him your lighthouse now... so you can make it back home...”
As I pondered his words I felt the truth of them and gratitude filled my heart.
I have been blessed with a little boy whose short life has sparked a light in my heart and another light far into the horizon. And when the skies darken, as they surely will, and the sea of life thrashes and threatens to destroy, I will look to the light within me and then to the light a great way off. My compass. My lighthouse. My son.