The day before Mitchell was discharged from the hospital, his neurologist came to say goodbye to him. She was the doctor who diagnosed him when he was 3 and monitored his muscular dystrophy growing up. She heard our little boy was suffering end-stage heart failure and she knew this would be the last time she would ever see him.
While the practice of medicine can get caught up in chemistry, physiology and biology, this image shows the nobility of compassionate medicine.
Visiting little Mitch was not easy for her. A few years prior her daughter had passed away and the rawness of her loss was still tender and returning to the CICU brought back painful memories. Yet she loved Mitchell more than her personal comfort and came to visit him anyway. She knew that a little boy was drowning in a sea of trouble, a sea whose undertow would pull him into the depths and darkness of beyond; and she reached out to him … to steady his worried mind and let him know she loved him.
I don’t know what crossed her mind as she drove home that day. Perhaps she cried like I cried. Probably not. But, I suspect her heart was heavy with sorrow by the loss of her own daughter and witnessing the imminent death of a little boy she had grown to love and care for. I do know the look on Mitchell’s face after she left told me he took great comfort that his doctor took the time to see him and offer the best medicine in time and eternity: love.
It has been almost 5 months since I lost my sweet son and time hasn't made things any easier. One thing I've learned on this painful journey is healing hurts. A lot. Not a day passes that I am not overwhelmed with the heaviest of grief and sorrow for having lost him. My daily commute to and from work is often accompanied by many, many tears. The deepest parts of my soul yearn to talk to him, to have his companionship, to hear his sweet voice and see his smiling face, and to let him know how much I love him. I never knew it was possible to weep so much, for so long. The wellspring of tears and sorrow seem to have an endless, generous reserve. Time grinds painfully by like sandpaper on an open wound. What I wouldn't do to have one more day with my son. There are times the ninth level of Dante's Inferno would seem a walk in the park.
And while my soul writhes from a pain I can barely endure, the wound from having lost my boy would seem to be healing other aspects of me, broken parts of me. I’m starting to learn that pain has the capacity to heal – another heavenly paradox, if we’ll allow it.
I wish I had the healer’s art; that I could have fixed his body. Yet, in all my efforts to save my son, I have begun to see that he’s the one who is saving me.
What we wouldn't do for one more day with our boy. The conversations, the love, the affections … we did our best to love little Mitch with all our hearts while he was with us, but we would do anything to love him more.
Mitchell has taught us to love like there’s no tomorrow – because one day there won't be.
Mitchell’s last Nerf gun battle lasted 2 minutes. Just as his war game was beginning to unfold, he leaned against the wall about to pass out while taking very shallow breaths. With a whisper in his ear, “I love you”, Natalie lifted our son in her arms and gently took him back to his room. Mitchell looked off into the distance with his arms softly wrapped around his mom.
We knew there wasn't much time to play. So Natalie made haste and quickly tore a piece from one of her dresses to make a headband – to show little Mitch she was “all in”. As I followed them back to Mitchell’s room, my heart swelled with a love and sadness that to this day I cannot find words to describe. In her arms was our dying son who just wanted to be a little boy.
Mitchell would never leave his room alive.
During his time at home Mitchell received hand-written letters and packages from all manner of military officers who were serving all over the world – some in hostile theatres. They had been following Mitch and wanted him to know they were inspired by his courage and strength. Some even said it was for him they fought. One of the tender ironies was Mitchell loved the military and was so touched they would even think to write him. Call of Duty was one of his favorite games and, for a 10 year old, he had a brilliant tactical mind. Upon reading some of these letters from Marines, Mitchell would ask me “Dad, do they really think I’m strong?” I turned to my son and said, “Son, in every way that matters you are as strong as they get, and I am so proud of you.” His brow furrowed as he began to think deeply on my words.
Mitchell was so tired and listless at the time, but I continued, “Let me tell you why I think you’re as strong as people get: real strength is doing the right thing when nobody is looking … and you have always done that. You are trustworthy and obedient and good. I am so proud to call you my son. Strength, the kind of strength that matters, isn't found in the body, but in the soul. And Mitch, you have a very strong soul. I love you so much.” I kissed his forehead and he lifted his arm around my neck to hug. If only I could have frozen time …
Within 24 hours of this photo little Mitch would gaze out his window for the last time and contemplate his life and accept the harsh reality of his death. This young warrior, who was mortally wounded by an invisible enemy, demonstrated one of the highest forms of strength and selflessness by telling his mom he was going to be okay.
Having lost my son to a biological enemy that knows no ransom, has no mercy, and offers no remission … I have decided to take up arms against this enemy of the body: to fight Duchenne Muscular Dystrophy with all that I am. This is a battle worth fighting because little boys like mine deserve to live. And any family is at risk.
I have been taught that if we turn to God, weak things can become strong things; that God gives us weaknesses so we can become humble, and if we turn to Him in our weaknesses, God will make weak things become strong things. That is one of the reasons we are given hardships in this life. Today, I have more weaknesses than I have strengths but I hope, in time, I can become as strong as my little son.
There have been agonizing moments, while stumbling in the pitch darkness of grief and loss that my soul has cried out “if anyone deserved to live, it was my son”, and that I should have been taken instead. Then a whisper to my soul reminded me death is not punishment, but rather a transition from one state of being to another. I was reminded of an 18th Century philosopher who said “We are not human beings having a spiritual experience; we are spiritual beings having a human experience.”
The purpose of life: a masterfully calculated landscape of hardship, happiness and putting trust in things that are invisible to the eye but discerned spiritually … all in an effort to refine our souls. And while the world seems in a constant state of unrest and war … I find myself ever more concerned about the quiet battles of the soul … the kind of battles that destroy us from within. Those, too, are battles worth fighting – and fighting well.
With each visit to the hospital, we became progressively more nervous. The news was never good, and always worse.
I made it a priority to go with Mitch to these doctor’s visits. I knew what was at stake and no business agenda was more important than supporting my little boy and my aching wife. I never wanted him to turn his head and find an empty chair next to him, where his father should have been when he needed a shoulder to lean on. I never wanted him to feel alone.
This was the day we learned Mitchell was in serious trouble. He didn't know it. He felt normal. And until his last month, Mitchell was never sick – which surprised his cardiologist, because he should have been profoundly ill. For this we were grateful and counted it among the many tender mercies we've received along this difficult journey.
After his ECHO we sat in an examination room waiting for the results. As I was fussing with my camera bag I noticed out of the corner of my eye, through the reflection of a mirror, little Mitch and his Mom playing catch. He giggled as they tossed a stuffed parrot back and forth. He loved parrots and he loved playing catch so this was a double-win for him. Natalie could have given him a digital pacifier (like an iPod) and she could have disappeared into a magazine or Pinterest as a means of escaping. Instead, she gave him all the love and attention she had – no matter how exhausted she might have been. It’s been said that the greatest act of sincerity is to give someone 100% of your attention. My sweet wife has always given our children 100% of her mind and heart.
To Mitch, little things were big things. A simple hug, a squeeze of the hand, a warm facial expression – everything meant so much to him.
Last summer my daughter quietly followed Mitch as he walked into his room only to discover a hand written note I put on his bed that read “Hi Mitch, I just wanted you to know that I think you are awesome and I love being your dad”. Peering down the hall under the cover of shadows, she quietly saw Mitch sit on the edge of the bed, read the note as his eyes filled with tears. He sat there for a bit, visibly touched and crying, wiping his eyes and then carefully placing my note in his night stand next to other things he treasured. I had long forgotten that I even gave him a note that day and had no idea it would touch him like that. It was a simple note … not very profound and my only hope was to give him a momentary, invisible hug while I was at work. But for Mitchell, it was more than that.
My daughter told me about this a few months ago and upon hearing this story I began to cry. It is a strange thing to have your heart break and swell at the same time.
Jupiter, it seems, is a place of paradox.
When I look back upon our life with Mitch and my other children, it was never the big trips that carry the sweetest memories. Often it was the impromptu campouts, the conversations on the grass, playing board games around the kitchen table and throwing a Frisbee at the park at dusk. It was playing “I Spy” in the car on the way to grandmas or trying to catch frogs with a butterfly net and screaming when they jumped out. It was playing catch with a stuffed parrot in the hospital.
These are little moments that are so easy to pass by. But they are the moments that carry the biggest memories. At least for me, these moments often came at the expense of convenience.
Earth, too, has its share of paradoxes: little things being big things are one of them. And the little things ... the invisible things … often make or break us.
I believe one day, when we've all passed on … when the fog is lifted from our spiritual eyes … we will look back on this life and wonder why we put so much energy into the things that are of least importance. I believe we’ll see with great clarity … that big things (by the world’s standards) were in fact the smallest of things … and the little things were the biggest.
This little moment between Mitch and his mom was then, and remains today, enormous. Within 4 months of this photo being taken our sweet little boy would pass away. We had no idea how precious time was. We are glad between this moment and his last he had many, many little moments that were big moments. Moments money cannot buy. Moments we will never forget.
I am deeply grateful for the little things.