When our children were little they looked forward to our Friday night den parties. I remember these nights so well. After they were bathed and dressed in their jammies, each child would carry a Sippy cup of juice mixed with a little water, a small bowl of popcorn and their favorite treat into our family room to watch a Disney movie. We didn’t have much – so we made what little we had count. Despite our struggle to make ends meet life was sweet back then and I wouldn’t trade it for anything.
I had a lot of self-doubt at the time, wondering about my place in the world and what I was supposed to do with my life. But one thing I never doubted was my desire to be a good husband and a loving father. I loved being a dad. I wasn’t the best at it … I really wasn’t … but I tried. Looking back, I would have done so much differently as a father. Yet, I don’t let my failures of the past haunt me … instead, I try to forge those failures into a personal lesson learned. A kind of mental note I take, so I can avoid future mistakes. I’m not sure I am good at that, either. But I keep trying to learn and grow from my wins and losses. One of the many beautiful things about children is their unconditional and abundant love. No matter how many times I might have disappointed them, been grumpy or impatient, they forgave me freely … and for that, I am eternally grateful.
It is interesting how forgiveness begets deeper love – and deeper love begets more forgiveness. Another note taken.
So on this ordinary summer night, Mitch became especially giddy. This tiny boy, the youngest of the bunch, loved being with his older siblings at every opportunity. He wanted to be just like them.
Mitch danced around the room in his cute little sweat pants and Spiderman shirt singing incoherent songs. He would then run back to this table, take a quick drink, then prance around some more. I could never pick him up and kiss him enough – sticky cheeks and all.
Reflecting back on good memories has been an important part of my healing – and I am grateful for so many of you who have listened with caring hearts and mourned with those that mourn. There is healing in that, too. Though I reflect on my memories in this place, I am actively creating new memories with my family – and that is just as important to my own healing. I need them both.
As ordinary and routine as life may have felt at the time, looking back, these moments now serve as a counter balance to sorrow and loss. When grief seems especially heavy, these sweet memories give me something to be grateful for. And gratitude is no empty thing: for it fills my heart and causes my soul to sing. Gratitude, my friends, soothes grief’s terrible sting.
Note taken.
“I’m convinced the only label that should be applied to people is, “Handle with Care.” For we’re all sons and daughters of somebody ... loved beyond compare. After all, without love, what else is there? I’ll tell you: a life filled with shiny things, yet empty and bare.”
Mitch sat quietly on the edge of his bed as his mother carefully opened care packages from all across the world. His little heart was weary and about to fail; so we learned to appreciate not just moments, but the moments between moments. Every second counted. Time was worth more than all the riches of earth … for soon this little boy would leave our home on a journey from which he would never return. Soon our hearts would break in ways we couldn’t imagine.
We no longer had heart monitors, respiratory readings, blood oxygen reports and the million other hospital things that reminded us he was dying. Instead, we had our little boy back. He was home. For a short time, we enjoyed the illusion everything was okay. But things were not okay. Not one bit.
Young Mitch was always touched by care packages from others; many of which bore labels on them, “Handle with Care.” It was such a tender time for our son and those words “Handle with Care” always seemed to soothe my troubled soul. Yet my son’s countenance bore a heavy burden – for I could see he knew his time was limited – which made every act of caring more special to him.
Elementary school teachers from far-off places, hearing of our son’s fate, had their classes write notes to Mitch with loving words of encouragement. Other young children taped quarters, nickels and dimes to paper and wrote with their tender hands, “Hi Mitch, here is my allowance. I hope it helps.” I wept every time I saw such letters to Mitch and I prayed that those little souls, and their caring families, would be blessed 100-fold for their kindness.
Young Mitch was confused that people he didn’t know would care so much about him. He would read letters from others and say with shallow breaths, “They are so nice to me.”
While Mitch slept, I would kneel outside his door and thank my Father for the tender mercies in our life. I knew we would not be spared from sorrow [no one ever is], so I learned to be grateful for the comforts that were found in our sorrows.
One man from New Jersey sent Mitch a Halo book which arrived the night he passed away. When we opened the package and told Mitch what it was, he squeezed his mother’s hand as if he wanted to wake up and see it. Oh, how he wanted to see it. His profusion was so low he was unable to open his eyes or sit up – but he could signal us, and that broke our hearts. For inside his broken little body was a spirit of a little boy who was very much alive and wanting to enjoy all the world had to offer.
Handle with care. I can’t get those words out of my soul, and I don’t want to. I saw what it did for my son and what it did to my family - and I am forever grateful for the loving kindness of others. I will spend the rest of my life paying it forward.
I’m convinced the only label that should be applied to people is, "Handle with Care." For we're all sons and daughters of somebody ... loved beyond compare. After all, without love, what else is there? I'll tell you: a life filled with shiny things, yet empty and bare.
Perhaps that's what little Mitch has left behind ... messages of love that he wants me to find.
Mitch lay patiently on the cold hospital bed as the medical technician began to record his heart function. I saw my son’s countenance drift to some far-off place and it seemed as though he were contemplating heavy thoughts; the kind of thoughts elderly people think at the twilight of their lives. Here was a young boy who should have had a lifetime ahead of him; instead, an invisible monster in his body was devouring his heart. At this point we knew his heart was failing, but not even the doctors knew how quickly things would unravel.
It wasn’t until this moment I realized Mitch sensed something was happening – and that something was not good. From the day of his birth I had a strong impression he would have a short life. But now Mitch was beginning to sense the same thing. He didn’t like going to the hospital for tests, but he bore that burden patiently. He didn’t like that his muscles were getting weaker and that he couldn’t play like healthy kids, but he carried that burden with a grateful heart for the things he could do. My little son has shown me how to bear my burdens patiently. I am not as good at it as he was, but I’m working at it.
I often wondered if those working in the hospital ever thought about what happened on the other side of their hospital doors. We go in sick, and if we’re lucky, we leave recovering … and alive. These professionals see a constant stream of broken bodies and I am sure that is numbing – but I wonder how often they pause for a moment and see broken souls. It doesn’t take much to bandage that, too.
With few exceptions, almost all of our doctors were both professional and human. They were cardiologists, but they were also fathers. They were nurses, and they were mothers too. I always appreciated the medical professionals who attacked a medical problem with clarity and vigor but remembered there was a frightened child and trembling parents who just wanted one more day. As patients and parents, we don’t need our doctors to be pseudo-psychologists, we just needed to know they care – even if only for a moment.
We left the hospital this day a little shaken up; afraid of the future and unsure of what was to come.
As we were walking out of the hospital Mitch said in his soft voice, “Dad?”
I turned to him, “Yes, son?”
“Can I go to work with you? I just want to spend time with you.”
My heart fell to the floor, “Of course, Mitch. I love to spending time with you, too. You can sit at my desk and play Minecraft, help me file some papers and organize my drawers. Then we can go to the Olive Garden for lunch.”
Mitch smiled and I smiled back, then I turned my head and wiped the welling tears from my eyes.
And that is just what happened. Mitch went to my office the next day and we spent time as father and son. Time I will never forget. Time that, in retrospect, was more valuable than all the treasures of earth.
In a few hours Natalie and I will speak at the University of Utah School of Medicine and share Mitchell’s Journey. There we’ll offer a candid look at what happens in the lives of those who fight for life and eventually lose. We hope to lift the curtain a little on what happens on the other side of the practice of medicine – so that when they are tempted to rush patients through a system designed to fix bodies, they might pause a moment and remember. Remember little boys and girls, like Mitch, who are frightened and in need of hope and a kind smile. For compassion is a kind of medicine, too.
I remember the muffled whispers from these two young boys as they negotiated an imaginary scene. Little Mitch and Ethan were hard at work making a movie in their minds. Their dimpled hands moved little toy figures from one place to another over an ever-changing landscape of cloth and couch pillows.
The child in my heart wanted to join them in the action – but I knew this was their time to bond, so I refrained and just watched these sweet boys from a distance do what they do best: imagine. “Petcheew, petcheew”, Ethan sounded with great energy. Mitch replied, “Aaaaahhhhh” as his chubby fingers escorted a little Star Wars figure from the air into a carpety ocean. Their imaginary tale continued for another 20 minutes. Quietly I sat with a smile on my face and an even bigger smile in my heart. I didn’t just see two little boys playing … I saw how much they loved each other and that filled my heart with the deepest joy.
Every single day these little boys created a storybook of adventure. Each page written moment-by-moment, sometimes with great brilliance. Furniture turned into vast mountain ranges, carpet into deep valleys. Our little home became an infinite universe of endless wonders.
Sometimes I wish I invested more energy in playing with my children when they were young. I tried, but looking back, I could have done better. I should have done better. But I suppose that is the lament of every parent. Maybe that is why grandparents are so great at what they do … because they finally learned that nothing is more important than the time we spend with family. They are less concerned with accumulating things and seem to be more interested in making moments – because by comparison, they don’t have many moments left.
Several years ago, about two years before Mitch was diagnosed with DMD, I sat at the kitchen table of a woman whom I just met. I had flown to Arizona to document some of her life story. Her name is Anita Farnsworth. A more lovely and kind person I have never met. I consider her a dear friend to this day.
She described in a most beautiful way her love of family. She has 14 children and more grand & great grandchildren than I can count. If I were to tell you the number, you might think I exaggerate. I carefully placed a microphone on her kitchen table and asked her to just talk to me. Soon I was swept away with her story as images from her words flooded my mind.
I asked her what it meant to be a mother. She said her first delivery was very difficult … and just after her delivery someone asked if she was going to have another, she said, “I don’t know why anyone would have more than one.” With a chuckle in her voice and a glowing smile on her face, she then said with tears in her eyes, “But then, I forgot about all of that. Why cut yourself short on blessings. [With children] there is so much love.” By the end of her beautiful characterization of motherhood, my eyes were overflowing with tears, overwhelmed by the truth of her words.
Imagine that … children are at once the most rewarding and challenging assignment in life. They are the source of great pain, worry and heartache … while at the same time they bring the richest joys and deepest fulfillment.
Sitting at that humble kitchen table was a woman who became a master teacher. I learned more about life in those few hours with her than I learned in all my years of university. About two years later, when she discovered Mitch was diagnosed with a fatal disease, she wrote me a most compassionate letter and offered her love and prayers. I was reminded of that time at her kitchen table when I felt so much love from her heart. I wept again … grateful for those who mourn with those that mourn. Grateful for those who have love in their hearts. I long for that day when the world lays down its weapons of war, its rhetoric of hate and shame and trades those cruel tools for more powerful agents of change. Love.
Imagine that …