I remember watching my sweet wife’s expression when she first laid eyes on Mitch in the delivery room. She immediately wept tears of joy and was overcome with a love that transcends words – a love only a mother can know. I cried watching her love him – I was so happy. Soon I got to hold our little baby for the first time; he was so tiny and I marveled at the miracle of life. I loved him the moment I laid eyes on him – for he was my son.
It is so hard to say goodbye after 10 years of life and love. I wish I had the power to heal him. I wish I could have traded places with my son.
I will never forget a tender conversation I had with Mitch just after he returned home from the hospital to die. I was tucking him in and he wanted me to cuddle with him for a while. As I lay by my broken son, we gazed into each other’s eyes and had the most soulful exchange I have ever experienced. I told Mitch that while I had been scrambling to find a way to save him, it was he who was saving me. With tears in my eyes, I thanked my little boy for being such a good example to our family and for inspiring me to be a better daddy, husband and person. Mitch cried and told me how happy he was and that he felt loved. With a kiss to his forehead my little boy continued to cry happy tears and tenderly burrowed his frail body into mine and drifted off to sleep. I wept a strange potpourri of tears that night – and many nights thereafter. Little Mitch was then, and remains today, the most profound and painful gift of my life. And though I journey through the wilderness of grief, I’m on my way, but I’m not there yet.
There is nothing linear about grief. I have often heard “time heals all” as though that glib phrase should give peace of mind or assuage a grieving heart. At least for me, that phrase has little to no meaning – and in some cases it does more harm than good. I would be quite content to never hear that phrase again. Time alone is no healing agent; that is a loosely written fiction. I believe healing has less to do with the passage of time but rather, like all things in life, it’s what we do with our time that matters. Surely time is necessary, but it is a minor ingredient. If I spend my time finding ways to bind my wounds and dress them with healing things – I am more likely to accelerate my path to recovery. On the other hand, if I mask my pain or agitate tender wounds, they may never close or heal. Time is a neutral thing – it’s what I do with it that matters.
I am on my way to healing, but I’m not there yet. I don’t know that I’ll ever fully recover from the loss of my son. What I can say is today is better than yesterday; not because time has simply passed but because I am allowing myself to do what I must – to accept my sorrows, and to not run from them but rather let pain take its course. I am learning to grieve in my own way, to hurt as long as I need to, to cry often (and I cry often), to write and remember everything that comes to mind. And, of course, I pray. I pray for peace and understanding. I pray also that my son knows how much I love and miss him. What I wouldn't do to hold him for 5 minutes.
I recently read a saying, “Those who mistake success for significance, will lead a deeply unfulfilled existence.” I pray I will never confuse the two. I would sooner give someone a boost, a smile or a loving hand than fill my wallet with that which does not satisfy. After all, you can’t fill an empty soul with empty things.
Little Mitch, my broken son, has taught me how to truly live ... to think less on the things I get and more on what I give. For my little boy had nothing to his name, save some little toys and modest clothes, his material things were plain. If he had nothing but gave so much, I have much to learn from him. For he lived a quiet life of significance and my heart he did truly win.
I’m on my path to healing, the end I cannot see, for the wilderness of grief seems to stretch out to forever, even to infinity. Please be patient with me my son … for I am broken, too, just in different ways than you. I’m on my way, but I’m not there yet.
This afternoon Natalie and I went to Primary Children’s Medical Center to visit another young boy who also has DMD and is struggling with heart failure. I didn't take photos of this family out of respect to their privacy, though I was strongly tempted to document their story. What happened to our sweet Mitch is happening to many, many other young children – and we want only to help them the best we can.
As Natalie and I stood outside the CICU waiting for security to let us in, my tender wife clutched the small gift she brought this boy, closed her eyes and gathered herself – for we were about to enter a place very near to our broken hearts. Just past this door and around the bend was Mitchell’s room where a medical team fought to save our son. Behind this red door was the very place we learned our son had days to live and our lives and hearts would become forever broken.
As the doors opened it felt as if we walked back in time. Part of me anxiously peered into Mitchell’s CICU room in hopes of seeing him – instead, I saw a tender infant in the very room that was home to our little boy. As we greeted the family we were there to see, we spoke with this young man a while. He was listless and tired and struggling. Our hearts went out to this young boy who, like Mitch, only wants to live. Our hearts also went out to his parents who love their son so very much. As we said our goodbyes in the hall our hearts were heavy with sorrow and overflowing with love for them.
As we left the hospital I couldn't help but retrace in my mind our journey home with Mitch – when he left the hospital to die. That was his last trip home and the longest commute of our life.
We don’t shake our fists at God for taking our son … His son, home. Instead, we kneel and thank God we had little Mitch in the first place and that because of him our hearts are filled with more love than ever before.
I believe sorrow can be a teacher, turned gift, if we allow it. There is a divine purpose to suffering and struggle if we listen with our hearts. Yet listening with our hearts can be difficult, especially when they’re trembling in sorrow. But, once we quiet our minds and listen with our soul, we will see our sorrows aren't meant to hurt us – but instead our hearts shape and mold. Though we lost our son and weep in grief, we have learned a deeper kind of empathy than we know how to speak.
I don’t know the future of Mitchell’s Journey, or the journey of our family in the years to come. I only know we want to lift and love others – that is what our sorrows taught us.
In ways we never knew possible … we care
In my garage hang 5 shovels that were used, as a matter of ceremony, to bury my dear son. Every day I come home I see them. I can’t NOT see them. These shovels are now symbols of what matters most and the price my family paid to be reminded of such. When I see them, suddenly material things are worthless to me; the pursuit of fame and attention, ring hollow and lame; and all the tinsel and chatter of the world lose their luster and powers of persuasion.
I just see 5 sacred symbols, still bearing dirt from the burial site, and am reminded of one missing boy I would do anything to see and hold again.
I don’t keep these symbols visible to agitate already tender wounds nor do I use them to fixate on the pain of loss; the kitchen table with an empty chair does that well enough. Instead, these shovels keep me focused and clear-minded. They remind me of the realities of life and also point to my most treasured relationships. Each day I leave my garage remembering Mitch and I make a promise to do better than the day before – to make whatever time I have on this earth matter. When I return home I am reminded to talk a little softer, to listen more intently, and to love more visibly … for everything, and I mean everything ... is temporary.
I made this video just after Mitch passed away vimeo.com/61500841 wherein these shovels were shown.
These symbols keep me sober and sane. They remind me to never dig a pit for my neighbor or intentionally cause harm to others, but rather to take compassion and help dig others out of trouble and help where I can. They remind me that I, too, will one day be laid to rest and I will be held accountable for my choices … for the help or harm I caused others.
I hope to never hurt another but always help ... and if I'm lucky, to build a soul with heaven's help.
A few years ago Mitch came dashing into my office and said, “Dad, come quickly! You have to see the most amazing rainbow.” I put Mitch on my back and quickly carried him upstairs to our front door. Indeed there was a rainbow, and it was beautiful. A summer storm had just broken and the afternoon sun revealed a most amazing spectacle of light against the backdrop of deep storm clouds and mountain shadows.
Mitch pointed to the array of colors and shadows and said, “Isn't it amazing, Dad?” I kissed his forehead and said, “Yes, son, it is amazing; but not as amazing as you. You, little boy, are more amazing than all the rainbows combined.” Mitch reached up and gave me a tender hug.
I stumbled into this photo recently and was brought back to this sweet exchange with my son. As I looked at this photo I had a moment of clarity that is difficult to describe; clarity about love and loss, grief and coping, and life after the storm. I am new to all of this grief stuff and I am sorting it out a little every day.
Recently I've been thinking about the notion “Your loved one wouldn't want you to be sad.” I believe this is an abused and confused statement. Surely our loved ones want us to be happy, but they also understand our sorrows in ways we do not - and it isn't necessary to feel guilt or veiled shame for hurting. Hurting is hard enough.
I believe Mitch knows, with great clarity, every tear I shed is a symbol of the deep love I have for him. They are also tender prayers to my Father that my weary heart might someday find rest. I believe our loved ones who have passed on, if they are permitted to see our sorrows, don’t look upon us with pity or disappointment that we hurt, but rather deep understanding. For they know the depth of our grief is matched only by the depth of our love. Yes, they want for our happiness, but they also understand our hurt. I believe they reverence our grief more than we appreciate.
At least for me, coping with grief isn't about faux bravery or denying my most tender feelings for my son. It isn't about somehow stepping out of the shadows of sorrow – as though such shadows don’t exist. Coping with grief is about learning to see the light despite the inescapable shadows of sorrow.
I see the light.
In my quest for peace and understanding I am learning that it’s okay to hurt, so long as I don’t hurt myself.