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, just prior to the Nerf battle, Natalie made haste and quickly tore a piece of fabric 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.
On Saturday we attended an MDA Muscle walk. I was so moved to see families of all kinds desperately trying to help the fight against muscular dystrophy.
On one level, it was difficult to be there because we wanted our son to be with us and we were reminded he wasn’t. On the other hand it was wonderful to be there because we met some families we have long wanted to meet. In fact, we’re going to spotlight one of those families at our Miles for Mitch Virtual Run on April 25th. If you haven’t yet, please consider joining our run virtually or in person: https://www.raceentry.com/race-reviews/miles-for-mitchell
You can learn about our goals for our virtual run here: http://tinyurl.com/mtj84pb
We didn’t need to be there – but we chose to be there because we care very much about these families who hurt and struggle. Our hearts were full of love and compassion for these kind families who face an uncertain and difficult future.
Natalie's sister, Sonya, also came with us to show her support. She was Mitchell's second mother and loved him as if he were her own.
At the end of the run Wyatt turned to his mom and said, “Going to this really made my day.” I felt a lump in my throat as I thought about how much Wyatt cares about others and only wants to honor his older brother by loving and supporting others.
I remember the morning Mitch passed away when I wrote "Mitchell's Journey is not over: it has only just begun ... in this life and the life after."
Two years later I am here to say that statement is as true today as it was then.
Mitchell's Journey is just getting started. This journey, while borne of grief and sorrow has morphed into a journey of love, faith and a hope for tomorrow. It's not my journey, I've come to see, its the journey of humanity - which is, indeed, a heavenly family.
I read your messages and I weep for your sorrows. Often, I fall to my knees in gratitude when I read your words of renewed faith and healing. All of you are so amazing. I read your messages and I wish I could respond personally to all of them, but cannot. However, you are all in my prayers, that your backs may be strengthened and burdens feel light .... and for those who walk in darkness, that you'll see an end to the night.
I've been out of town most of this week on business and landed in Salt Lake early this morning, then drove straight to the office.
On my drive home tonight all I could think about was how excited I was to see my little family. I miss them a great deal. On my way home I stopped by to see Mitch and saw that Natalie had changed his flowers.
I was brought to tears to think how much his mommy cares about him and how she tries to love and serve him even though he is gone. She remembers the smallest details, including little birds that Mitch adored, in her arrangements.
Dressing up Mitchell's headstone is one of her grief rituals, and I adore her for it.
D
“Dad, will you hold my hand? Will you help me not fall?” Mitch said with a sweet, soft voice. I reached out to hold his hand as Mitch leaned downward and reached into the crystal clear waters that flowed from a natural hot spring. “It’s like a bath! Do you think I could swim in it?” Mitch was fascinated that nature could produce such warm water. Until that moment, he only knew the icy streams that came from snowmelt.
We were at a fathers & son’s campout and I was so excited to hang out with my boys. We played Frisbee on the grass and cooked our famous tinfoil dinners and were the envy of every camper who could smell the magical meal cooking slowly in the glowing embers. Mitch loved that special recipe.
Later that evening we would find ourselves huddled in our family tent listening to a torrential downpour, exhilarated by the relentless crash of thunder that exploded right above our heads. Mitch snuggled into me with his sleeping bag as I wrapped my arm around him and held him tight. Little Wyatt sat on my other side, lovingly wrapped by my other arm. Ethan bravely sat with a smile and listened to the rain pound the walls of our tent, ready to pack up on a moments notice were we to flood.
We made it through the night dry and un-drenched. I am grateful for those moments with my family. If I have a regret in life it is that I didn’t have enough of them. I did my best, but I wish I would have done more.
I often think back on this moment when Mitch asked for help to do something other children could have done with ease. His muscles were weak and his balance always precarious. The slightest bump from someone could send him crashing to the ground. Often, Mitchie’s plea was, “Help me not fall.” Always, when he asked for help, I was reminded of things I took for granted.
Those words, “help me not fall” will echo in my mind forever. As his father, I didn’t want Mitch to fall and hurt himself … yet at the same time I didn’t want to rob my son the opportunity to do things on his own. Therein lies the delicate parental balance … to help enough to enable growth but not enough to rob it.
When I think about it, it doesn’t take much to recognize my Father is doing the same thing with me, and all of us. His hand is often out of view and we go about our lives unaware of His true goodness.
Just tonight something significant happened to me – a heavenly reminder that He is there … and that He cares.
Every time I kneel and ask my Father to “help me not fall” I get the distinct impression that He is not only there … but that He has always been there – helping me just enough to enable growth, but never enough to rob it.
At least on some level, being a Father myself, I think I understand now. And I wouldn’t have it any other way.