It was April 2012, Mitchell’s last spring, and we were about to head home from our annual Easter trip at our family ranch. A few weeks prior I had returned from a business trip in Honduras and was so glad to be back with my family. The US State Department issued a travel warning indicating the risk was critically high, having the highest murder rate in the world. While there I was careful, but I found the people of that country beautiful, kind and my heart went out to them. I fell in love with their people and wished only to help them. Coming home was especially sweet because I realized how blessed I have been. The lyrics to the song “Because I have Been Given Much, I Too Must Give” kept playing in my mind.
While I have enjoyed traveling the world a little, I have discovered how much my family is my world. I would sooner explore the peaks and valleys of family life with them than visit all the wonders of earth.
As I took this photo of my kids I remember feeling the genuine, unrestrained love among these children. My heart sang. Mitch surrounded by siblings and a cousin proudly wore the soccer jersey I gave him as a souvenir from Honduras. Unlike his siblings, Mitchie would wear his souvenirs long after my other kids moved on from theirs. It wasn't that my other children were ungrateful; Mitch just had a heart that was more sentimental than the average person. While he loved getting things, he appreciated the meaning behind things even more. You could give him a paperclip and say, “I got this for you because it reminded me how sweet you are.” Mitch would treasure that simple paperclip as an emblem of affection. Sweet Mitch was the keeper of many virtues; chief among them, gratitude. I love that little boy.
At this moment I had no idea we would have less than a year with our son. No one handed me a memo that read, “Mind your moments, it’s later than you think.”
A few weeks from this photo we would get just such a memo from Mitchell’s cardiologist that read, “Beware: Mitchell’s heart is in trouble.” We had hope medicine would slow the catastrophic muscle wasting to his heart, but we were awakened to the harsh realities of DMD, once again. I remember not sleeping well the night we got the first memo. I went to my computer and put this video together. (vimeo.com/42931543) In many respects, this was my first real post on Mitchell’s Journey. Sure I’ve back-dated some early photos, but this was my first, clunky attempt at sharing the gravity of it all.
Within six months of this photo, we would get second memo that our son was in serious trouble and was at risk of sudden death. Within 10 months, a memo our son would die any day. Then, a few weeks later, the end.
I wonder how often life has handed me a memo and I ignored it because I was too proud, too preoccupied or simply chasing squirrels. I have always tried to manage life’s memos, but being human I am sure I missed some. I know I cannot change the past, redo missed moments, nor can I undo my mistakes however big or small; but I can own my moments … from this moment to forever. I get it now. I got the memo.
I cannot wait for the day I get the memo that says “Your son is just around the corner.” For I will run to him with paperclips and kisses and a heart overflowing with love. I think I will cry. Forever.
Before my son started to slip into oblivion I wrote in my journal “To have a child with DMD is to cradle a baby made of sand. No matter how hard we try to keep them together, they break apart and slip through our fingers. There is no stopping it.”
I agonized that my son was slipping through my fingers and I couldn't keep him together. In his final days I could scarcely hold a handful of him – there was little of him left and he was blowing away by the winds of change.
As long as I can remember I always wanted to be a father; I loved children and I couldn't wait to have my own. Only when my wife and I started our own family did I begin to understand the depths of love – how deep, wondrous and beautiful the journey of parenting can be. Once I began to hold my babies in my arms, when I learned how to dry their tears and carry their sorrows, to make them giggle and help them take steps into a brave new world … only then did I begin to understand, perhaps only on a primordial level, what our Father feels about us. He is, after all, our Dad.
While I did all that I could to protect my children from harm, I also understood I couldn't always rescue them – that sometimes they needed to work out their own troubles, even if I stood nearby should they needed a helping hand or words of encouragement. Were I to rescue my children from the little troubles they would not learn how to solve problems and soon find themselves in much bigger trouble. A delicate balance parenting is. Natalie and I understood that in our struggle are we made strong – and insulating our children from struggle doesn't help them, it hurts them in the long run. I know our Father understands this better than anyone. He didn't send us here to build cities, riches and other things – He sent us here to build our souls by the sweat of our brow and the toils of our heart. All that is material is simply immaterial, in the end.
So there I sat at my son’s bedside with tears running down my neck – holding my baby made of sand. I, too, was very much a child at heart and looked to my Father for guidance. I knew life was meant to be a struggle of the soul but, being human and a frightened child, I still prayed, even begged, He would somehow rescue my son and family from such a sorrow. But if not, I trusted the wisdom of my Father, and on bended and broken knees I followed Him.
Although I always longed to be a parent, I never knew fatherhood would come to me at such a heavy price. There have been times my sorrows have been so deep that I wished for death, for such would have been a sweet relief. Yet in my sorrows and in my grief, I have learned about our Father and His unspeakable peace. It doesn't always stay and sometimes it’s rather brief … just long enough to let me know my Father is standing nearby, should I need His helping hand and some heavenly relief.
I am grateful for a Father, who is so much wiser than I; who knows when not to rescue and stand quietly nearby. I am grateful for a Tutor of the soul so infinitely wise; who knows it’s in our struggle we learn to see with heaven’s eyes.
As bewildering as this journey has been, I wouldn't trade my time with Mitch for all the peace of mind or riches of men. Though I stumble and often weep, I will bear the burden of grief with gladness … for Mitch was mine to love and to keep.
When I think back on my baby made of sand, I realize at once, such is the fate of man. There will come a day I will see my son again, no longer grains of sand, but a soul immortal and beautiful … masterfully shaped by our Father’s hand.
Last Spring my wife and I drove to Mitchell’s elementary school to collect his personal and school belongings. The air was cold and the sky was wrapped in a dull, grey blanket of clouds that seemed to match the mood of things. As we approached the school I reflected on all of the amazing teachers and staff who had done so much to support and love our family and I was overcome with gratitude. There was no coldness in my heart.
I was doing okay until his teacher reached for a file box that contained everything that was Mitchells. In an instant, I was overcome by strong emotions and I did all that I could to hold back a massive surge of tears. Tears came anyway. My hands trembled and my body quaked as I quietly gasped for air. The pain of this moment was palpable.
There, in a cardboard box, were items that to a stranger would have no value. But to us, its contents were priceless: a plastic container filled with pencils and crayons that Mitchell collected, a name tag, pieces of paper with his handwriting … a potpourri of elementary school artifacts that to me were more valuable than all the treasures of ancient Egypt.
As Mitchell’s teacher (Mrs. Masina) handed the box to Natalie she gave her a hug. I stood a few feet away fighting back the tears, doing all that I could to keep composed. All I wanted to do was curl up in a corner and sob. This compassionate teacher described how much Mitchell meant to her and that she loved him – it was clear that she was hurting, too. With a broken voice she admitted handing the box over to us was difficult because she loved Mitch and she felt like she was giving part of her heart away.
After Mitchell passed away she had each student write down their memories of him and carefully laminated, then bound the pages into a book. Each page was thoughtfully authored from his peers; each page was personal and authentic. Mitchell was universally referred to by his classmates as kind, deeply caring, fun to be with and humble. Reading through these hand written letters and drawings from 5th Graders, I learned quite a bit about Mitch. I also learned a lot about 5th graders … especially what they notice. I was reminded of one of my favorite sayings: “Oh what a tangled web do parents weave when they think their children are naive.” In reading their observations it was clear these young children were reflective, thoughtful and keen observers. These young students were my teacher and I have been taking notes.
After we collected Mitchell’s desk belongings we went to the front office to get his scooter, which was charging in the Principals supply room. As I unplugged his scooter I noticed a collection of sports day ribbons hanging from his handlebar, evidence my little boy strived to achieve and won. He hung those ribbons from his scooter as a reminder to himself he could do hard things. I was so proud of Mitch and wished he was sitting there so I could hug him and tell him what a great boy he was. But he was not there and nor would he ever be; never had a chair seemed so empty.
This painful but gentle exchange between Mitchell’s mother and school teacher was a gentle reminder education is more than academics – that knowledge without humanity is hollow. The best teachers also teach what it means to be human – not by what they say, but who they are. Mrs. Masina taught humanity and love beautifully … and so did her students.
So here we stand on the other side of Mitchell’s education … and suddenly we are students of the hardest lesson life has to teach. Our homework, invisible to the eye, must be worked out in quiet of the mind and heart. What we take and learn from our hardships is engraved in our soul and shapes what we become. I get the impression the homework of grief will take a lifetime to complete.
When I look at this photo and see an empty-handed mother leaving our son’s school, I am reminded there is a classroom none of us leave alive.
Sometimes we are teachers … but we are always students.
We had just gone to the mountains to take some family photos. This was the day we took our last family portrait, save the one taken by a dear follower 2 days before Mitch passed away. That was a family portrait of a different caliber – one that we reverence.
I generally avoid posed photos because I much prefer raw captures of life unrehearsed. Besides, nothing is more fatiguing to others than to have someone say “Okay, everyone stop what you’re doing and look at me so I can take a semi-candid photo of you smiling.” I would rather photograph someone laughing at the dinner table, food-in-mouth, than take a staged photo where hair and makeup are perfect but illusory. Over the years I have captured tears and triumphs, sadness and glee … moments that are difficult to look at and send me to my knees. But these images are my life, they are what I see – and I will always take them unapologetically.
So, on this day, for some reason we felt it important to take some family photos and I am glad we did. What you see here is a photo of me taking my daughter’s portrait on the left, and the exact photo I took on the right. I was unaware Mitch had another camera trained on me and he took this photo of me taking a photo. Mitch had seen previous images I had taken in Nicaragua where one of my colleagues took a photo of me taking a photo and I had done something similar to what you see here. I remember pointing to that Nicaragua photo set and saying, “Mitch, can you see what a difference perspective can make?” I continued to tell my son that so often with life it isn’t what you see, it’s how you see it. Mitch, having seen what I had earlier done tried to recreate that same juxtaposition. Well done, son. I miss you.
I have always wanted my children to learn how to see with their true eyes; to understand a fundamental truth … that so often it isn't what we see that matters, but how we see it. So much of what plagues humanity, it seems, is seeing things from a single, myopic perspective. There is a saying that goes, “Those that hurt others, hurt.” Perhaps the solution to those who compulsively gossip, who say and do harmful things isn't to retaliate in-kind, but to recognize they are hurting, too, and seek to discover the sliver in their soul that is causing them pain. And if we’re listening, if we stop looking only at what we see on the surface and change how we see, perhaps we can truly help others. I have discovered the best way to disarm someone is to love them.
It’s not what you see, it’s how you see it. In the case of these images, neither are wrong, they just tell a different story. And although this photo is not of my son, one of these photos was taken by him and tells a story about my boy – what he chose to see. So, this image serves as a reminder to mind my perspective, always.
I can chose to look up on the death of my innocent son as a horror story and raise my fist toward God. That act of defiance will not change a thing, nor will it change Him; instead turning my back toward my Father would change me … even poison me. I know that there is a greater plan at work, so I will endure whatever lessons patiently. I just wish it didn't hurt so much. Yet, I sense there will come a day that I will yet see my sorrows differently. They will no longer be the source of my heartache, but the contrast needed to truly appreciate that sacred reunion with my son; for I cannot know great happiness without knowing great sorrow.
As I travel through my wilderness of grief, I will always look to the heavens to find my way. I will search for, count and chart our tender mercies as an evidence of God’s love – despite what we are asked to suffer. And though I am certain to see more sorrow in the years ahead, I will remember that it isn't what I see that matters, but how I see it.
Thank you Mitch, for taking this photo and reminding me so poignantly.