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
We knew the time was soon coming Mitch would lose his ability to do … everything. Although we were in the early stage of DMD, Natalie and I felt it best to sell our home and find a place that would eventually accommodate his physical needs and give us time to grow roots in a community before the storm came. Mitch was such a young boy and didn't have any idea we sold our home and built a new one just because of him – neither did he have any idea the violent storm that was headed his way and would soon rip his life from him. That storm we were told would surely come, came much faster than any of us imagined.
In this photo we were sitting with our kids in the master bedroom; the carpet had just been installed and our home felt like a huge cardboard fort that we were going to start living in. The kids were so excited ... and the little kid in me was, too. At one point Mitch leaned forward and kissed Wyatt’s forehead. Wyatt, being a tiny little baby, toy still in mouth, tried to love his brother in-kind and give him a sloppy kiss as only teething babies know to do. I marvel how children instinctively know love … and I marvel equally how grownups and nations, who, through time and experience ought to know better, tend to forget how to love and be kind.
Wyatt was a tiny baby, just approaching his first birthday. Mitch loved being a big brother and was glad to no longer be the baby of the family. Mitch, having a younger sibling, was beginning to learn a new dimension of love. It is one thing to love and be loved by a parent or an older sibling, but to reach down and care for a little one … that is a different kind of service, a different kind of love. Mitch was learning to love anew. As his father, watching Mitch love his little brother, I was learning to love anew, too.
Because of the way I photo-journal, I often encounter moments unprepared – but I shoot anyway. I have come to appreciate the true beauty of any photo has less to do with light and composition (though helpful), but rather their true beauty is found in the stories they tell. I would rather have a million blurry photos of love and life than any number of staged moments shrink-wrapped technical perfection. Photojournalism, to me, has become something of a metaphor and symbol of how I try to live my life. If I hold out for the perfect moment, if I artificially construct something that isn't real, I will miss out on a million magic moments.
This simple, flawed and dimly lit photo captures my heart because the subjects herein are my heart – and this moment of unrehearsed love between siblings sweeps my heart to a peaceful place and it lingers there a while. I am thankful for those peaceful moments. As much as I try to be in the moment, there is a part of me that wishes to go back in time and re-live these magic moments – to drink it in more slowly and to savor every part of it. Though life can hand out great difficulties and bring me to my knees, there is beauty in the details of the moment – more than I had eyes to see.
To me, it is ironic that when I was young and growing I wanted to race to tomorrow and chase the promise and secrets it kept. Time, like a giant, invisible key was slowly unlocking me from the tyranny of parents enforcing curfews, bedtimes, chores and homework – tomorrow couldn't come fast enough. The minutes felt like hours and months miniature years. Time was an uncompromising tether keeping me from the freedom of the future. But tomorrow has come and gone … over 14,000 of them, in fact. Suddenly I have found my years add up and I no longer want for tomorrow or the quick passage of time, except to see my little son again. The older I get the faster time feels and I wish it to slow down like it seemed when I was young – because today I appreciate the value of magic moments in ways I didn't back then.
Tomorrow can keep its secrets, every last one … for there is magic in the moment and I will seek after them until my time is done.
I posted this image on Instagram last night. We spent some time in front of our home as Natalie drove Ethan's motorcycle for the first time. We all laughed as we saw this sweet woman, who with sweaty palms and a nervous heart, do something she had never done before.
Mitch adored his mother. I believe much of his sense of humor and sweetness came from her.
I have heard it said couples who lose a child are at higher risk of divorce because, among other things, the very sight of their partner reminds them of their fallen child and that becomes a source of great pain.
When I look at my wife, I see a wonderful woman who is fearless and kind. I see a soul that I love and admire greatly. I also see echoes of my sweet son. Each day I fall in love all over again.
http://instagram.com/p/
When Mitch was a young boy he thought the little forest in our back yard was a gateway to something magical. It is a small, unremarkable place, but if you take your imagination with you, it’s as big as you want it to be and more amazing than any place on earth.
Just yesterday I took my older kids up to the woods and together we toiled to build a small pond along the trail. I included them in the design and creation of it because I wanted them to have a sense of ownership and accomplishment. My heart smiled seeing Ethan & Laura-Ashley work together as a team to do something they've always wanted to do and to do it in the memory of their little brother. I have discovered the process of grief is aided greatly by doing something constructive. While Mitch may have left us, his dream for this little forest remains. It has rallied the hearts and minds of my children and become a type of therapy for us all. We still have many plans for this place and we will work on it every weekend as a family.
My daughter purchased some floating lily pads that glow green, purple and blue at night, which makes the secret forest even more magical when the sun hides its face behind the hills. The forest, now home to some artificial fireflies, make for an even more magical experience. The trail, softly lit by glowing mason jars, gives just enough light to see the path before you and not get lost in the mysterious woods.
So, last night, after having installed our pond, Wyatt set a glowing turtle next to the water to keep watch. I loved the look of wonder on his face. He later asked me, “Dad, can we go up there every night?” I told him, “You bet, son. You bet.”
Each night this tiny forest gets a little more magical. Each of my children have their fingerprint on this forest – and that makes my heart smile. This little wooded forest has become a place to remember the past and enjoy the magic of now. This night my heart is filled with gratitude and peace.
Here is a short post on Instagram that matches the magical mood of last night: http://tinyurl.com/qjlk2vj
This is the view from the top of our property and just outside the secret forest. Mitch loved this place. We placed a bench here years ago and Mitch and I would eat Popsicles and talk about life, friends and video games while we watched our part of the world turn away from the sun.
In a manner of speaking, this place has become hallowed ground to me; both because of the memories it keeps and also because it reminds me to try and see above all that would obstruct my view of life. I hope to always see the forest through the trees … and the world for what it is and what it isn't. I hope to always have perspective.