Last fall we took our kids to the same canyon we visited a year prior when we captured our last family portrait with Mitch. Only this time we carried with us the original painting my friend and talented artist Tyler Streeter created in honor of our fallen son.
My chest was heavy and my rib cage physically sore and fatigued from months of prolonged sorrow. Breathing seemed harder than normal this day.
We hiked along a trail that crossed some wetlands & a pond to the same location we took a photo of our kids when Mitch was with us. Ordinarily I don’t take portraits in part because I prefer capturing life unrehearsed but also because taking photos of young kids is about as easy as herding cats. But my kids have become accustom to me and my camera and they cooperate on the rare occasions I want a portrait style photo. This was one of those moments.
Last year I posted something that contemplated the economy of love and family. I wrote: “Love is such an interesting phenomenon. When we had our first child I thought to myself "I love this child so much, it is impossible for me to love another human more than this." In fact, I often wondered if I even had the capacity to love another person because the circumference of my love was bursting at the seams. Then, my second child arrived. I discovered that I didn't need to divide the love I felt for my first and share it with my second child. My love multiplied. And so it continued ... with each child my capacity to love increased exponentially. Oh, the arithmetic of family ... the arithmetic of God's plan.”
I love being a father. I have never in my life experienced more joy and more sorrow than I have from being a dad. And as impossibly difficult as it has been I wouldn't trade my life for anything. Through our joys and sorrows we grow. To what end, only God knows. But I have faith whatever burdens I am asked to bear will all make heavenly sense when looking back from over there.
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Painting by http://www.tylerstreeter.com/
Thank you Tyson Breckenridge & Tyler Streeter for reaching out and blessing our family with such a remarkable gift. We are forever in your debt.
It was nearly noon on a hot summer day and little tummies were beginning to rumble. Natalie had called the kids to eat some lunch she had earlier prepared but Mitch had one more adventure to take before he took a break. I can still hear the sound Mitchell’s tiny flat feet slapping the wet floor as he scuttled across the pool deck to the deep end. There was an adventure to take and he wasn't about to miss it.
Mitch was quite a swimmer when he was a wee child. He could also hold his breath longer than most and seemed to enjoy floating in the water face down. I once asked little Mitch why he liked to float face down and he looked at me and smiled, “It feels like I’m flying.” Many lifeguards confused Mitchell’s aqua-flying for drowning and nearly dove in to save him thinking he was in trouble. This young boy loved water in part because he loved to feel free.
Little Mitch nervously clung to the end of the handrail and peered over the edge of the diving board into the deep water just below his feet. Until this moment he had only known shallow pools, bathtubs and water in the safety of our arms. But the deep end was where the big people went and Mitch wanted to give it a try, all by himself. After a moment he let go of the handrail and slowly walked to the edge, then with a deep breath he jumped into the water.
I remember the first time I dove into the deep end. I was about the age of Mitch in this photo (~4 years old) … I can still feel traces of the panic that coursed through my body as I was swallowed up by the deep blue. Until this moment, like Mitch, water had been my gentle friend and playmate. But in an instant I realized how scary and unforgiving water can be. Suddenly I gained a new respect for water and for all things deep.
As my little boy paused a moment to consider what was before him I took this photo and marveled at his bravery. Then, within a few seconds, he had hurled himself into the deep and was out of sight. Little Mitch was so electrified by what he experienced he wanted to jump off the diving board again and again. Though he respected the danger of deep water he faced it and conquered his fear of it. Being physically weak he had every reason to retreat and find reasons not to do hard things. But he instinctively faced hard things with courage. And that courage rewarded him as he faced death, the deepest of human experience.
I remember being a little numb this day. The evening prior I had stayed up nearly the entire night at our kitchen table crying and reading books … lots of books. One of them “Realities in Coping with Progressive Neuromuscular Diseases” wasn't a book for parents, but physicians and primary care providers. It was brutal and factual – and while the book was dated and some thinking obsolete, it provided a desperately needed candor on the subject of my son’s disease. I was hungry to learn all that I could about DMD and didn't have time or the patience for soft descriptions and vagaries. I wanted to know what my son was dealing with – and I wanted it straight.
Like my son in this photo, I was holding on to anything I could as I peered nervously into the depths at my feet – only I couldn't see the bottom and everything was dark.
Later that evening, as I scanned my photos of the day I saw this image and committed it to canvas. I originally titled it “Taking Chances”. At the time courage to take a chance is what it symbolized to me. But today this image resembles so much more than that. It hangs in my home as a reminder that strength and courage are matters of the mind and soul more than the body and if my son can do hard things so can I.
It was difficult to get Mitch to eat. His appetite took a significant dive mid-December and with few exceptions it never really returned. His perfusion was so poor that, even if he felt like eating, his digestive system couldn't handle much of anything. Toward the end my son would throw up whenever he ate. That was so hard to see. His body, already weak and frail, struggled to recover after each violent episode.
Natalie had prepared some soup for Mitch and I asked if he wanted to eat in bed. This time he wanted to walk to the kitchen so I held my sons hand as we carefully made our way. He was tired but determined to be independent as long as possible. I love him. Mitch arched his back as he walked to keep his balance because DMD had already stripped his strength away. He was getting so frail and his interaction with the world increasingly brittle.
Ever since he was a tiny little boy we had a very special manner in which Mitch and I held hands. As I softly held his hand escorting him to the kitchen, he moved his hand to hold mine in our special way. The lump in my throat, which never seemed to leave, began to grow. I smiled softly at him and put on a brave face but inside I was falling apart.
Mitch didn't get sick this day – for which I was grateful.
As I looked at my little boy I couldn't help but see something else. I saw my brother. I didn't see someone who looked like one of my brothers, I saw a little boy who was my brother. Toward the end I saw in Mitch things that startled me … I will write of those another time.
I have spent much of my life contemplating the age of a soul. How old are we really? No one really knows, I suppose … at least not here. But when I am quiet and thoughtful I get a sense we are older than we know. And when I think of my son, my brother, I get the recurring impression I am Mitchell’s younger brother and that he was teaching me.
When we checked Mitch into the emergency room we knew things were serious, but we didn't grasp how serious things were until nurses started calling doctors and doctors started calling other doctors. Everything went from routine to rigorous in a big hurry. My little son was crashing and by the time he was moved to the Cardiac Intensive Care Unit (CICU) he was pale. He was different.
Natalie and I followed little Mitch to his CICU room but waited just behind the glass wall for things to settle. We didn't want to get in the way as the medical team was quickly trying to stabilize him. Mitchell’s eyes grew big as he watched this concerned medical team scurry about tending to his care. As I peered through the glass wall my heart sank and my soul ached. There was my son, my little soul mate, and he was in big trouble.
By the time Mitch was stabilized the ER doctor (Dr. Herman) who had escalated Mitchell’s case to the CICU came to our floor to see if Mitch even survived. When he walked in our room and saw that Mitch was still alive relief washed over his face. I was so touched that this doctor actually cared. My son wasn't just a case number, or a biological puzzle to solve, or body to fix … Mitch was a little person who had feelings and family who loved him … desperately. Humanity and compassion was clearly not lost on this doctor and his short visit, to show that he cared, did more for our hearts than he will ever know.
Dr. Herman knew what to be and when. He was all business when trying to save Mitchell’s life and get him into the CICU. But after the emergency passed he was human … he cared. I can say the same about everyone at Primary Children’s Hospital who cared for our son. They not only cared after him, they cared about him.
Within a few hours we would learn that Mitch was experiencing end-stage heart failure and that he had days to live. Weeks if he was lucky. We weren't sure if Mitch would leave the hospital alive.
During our week-long stay doctors and medical staff would occasionally comment how moved they were by our love and dedication toward our son. Natalie and I slept together on a couch made for one. We never really slept – but we tried to rest. These doctors told us that some children are left for extended periods of time and their parents seemed emotionally disconnected. What we thought was normal love and attention seemed unusual or uncommon to them. My heart broke for other children who were left feeling unloved.
When we told Mitchell he would need to stay at the hospital for at least a week his eyes filled with tears. He didn't want to be there – he just wanted to be home with his family and to play with his friends. By the time we left the hospital, having been discharged to die at home, my sweet son asked about his homework and wondered if his teacher would let him have a little more time to complete it. With all that he had experienced, doing his duty was top of mind for my son. Mitch, even in the depths of hardship, was an honorable and noble soul. I hugged my son and said, “Oh, sweet Mitchie, don’t worry about that. Let’s just go home and focus on family.”
Family and a pocket of lint was all we had left. Medicine had failed us – there was no cure. Transplant policies failed us – pointing to antiquated philosophies. And our hearts almost failed us – we were so scared.
After everything in our world failed, Pat Furlong with PPMD, and Dr. Cripe from Nationwide (who we honor as heroes) came rushing to help Mitch. But too much was happening too late.
There was nothing we could do but go home and love this little boy with all of our heart. And our hearts trembled.
Family and a pocket of lint … I would rather have that than all the riches of earth and honors of men. I am reminded of Oscar Wilde’s cautionary phrase, “Nowadays people know the price of everything and the value of nothing.” I pray I am never counted among those of whom he spoke … for the value of family is without price. And family has a value for which I would pay any price.
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Here is an image of Dr. Herman examining Mitch in the Emergency Room: https://www.facebook.com/photo.php?fbid=622937311069267&set=pb.192859897410346.-2207520000.1388611662.&type=3&theater