BITTER PILLS CAN BE BLESSINGS

Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.

I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time.
— Christopher M. Jones | Mitchell's Journey

For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him. 

I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.

And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.

Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.

I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.

Thirty minutes later, he was gone. I know he heard me. I know it. 

The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.

Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me. 

So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.

ALONE IN THE DARK

A few weeks ago I took my sweet wife on a winter photo shoot. The night was bitter cold and the earth was covered in a fresh blanket of fluffy snow. Mitch would have been entranced by the quiet beauty of it all. I never go anywhere that I don’t take my little son with me in my mind and heart.

When we arrived at the secluded wood I handed my wife a lantern made of twigs I discovered several months prior. I then placed a light in the heart of the lamp. As Natalie began to walk through a darkened, wintry forest I shot what was in my mind and heart. It was a metaphor for something I was feeling and I had to get it out of me. Everything went as I had hoped.

We didn’t take long as it was cold and dark outside and we were anxious to be home with our children. Before we left I hung my lantern on the broken trunk of a fallen tree. The light from the lamp was warm and beautiful against the backdrop of a frigid, wintry night. 

I thought deeply that evening about what it means to be alone in the dark; how we must often walk by the dim lamp of faith and hope as we journey through our own wilderness of hardship and struggle. 

It is easy to talk of faith in the abstract, from a pulpit, citing other people’s words. But when life requires us to walk that dark mile, alone ... there is often a breathless silence. When it is our turn to truly suffer, and then take those first few steps into the pitch of night, faith takes on a different, more exacting meaning. 

Surely we may have people around us cheering us on, offering love and support. But they cannot bear the burden of the sufferer. They don't know, nor can they know, the horrors of the sufferers heart. And when the night comes, when we lay down to sleep, that is when the unfiltered horrors of loss and sorrow are ours and ours alone. As I wrote in an earlier post, "After all is said and done, the journey of grief is traveled by one." In my experience, going to sleep or waking up was when I was most alone in the dark.

Yet during my darkest moments … when I felt I was drowning in a rising tide of grief and sorrow, I would have subtle impressions and feelings of peace that defied my own understanding and soothed my weary soul. They didn’t take away my sorrow; they only gave me a measure of understanding and just enough strength to carry on a little further. 

I am no fanatic, but I believe that when this life is behind us, we will look back on our mortal moments of darkness and realize we were never truly alone in the dark … but that we were surrounded by beings of light we cannot yet see. We will come to know what ancient Elisha knew, “they that be with us” are far more than we realize. And were our eyes truly opened, we would see the mountains we once thought barren were in fact full. Helping us. Soothing us. Offering help and direction.

Ralph Waldo Emerson once observed, “Though we travel the world over to find the beautiful, we must carry it with us, or we find it not.” The same could be said of spiritual light. We must carry it with us, however dimly, or we will see it not.

SILVER RUSH

Last Thursday my sweet wife stood before Riverton High School’s student body and thanked them for supporting Mitchell’s Journey. 

Natalie spoke on behalf of all mothers of DMD; she described how scary it can be and how she wants to help other mothers who see their child's fate and don't know what to do. When it was my turn to say something, I thanked them for their incredible example and for helping us help others. I told them I have seen a lot of things in my life, but I have never seen something quite like them. 

After our short address these students rose to their feet and clapped with thunderous applause. There was an energy in that room that was humbling and at the same time electrifying. It was clear by their energy something inside them changed – or perhaps, their true goodness was simply being revealed. To them it wasn't about the money ... it was about the change.

These students have raised the bar for humanity. This is the rising generation. A generation that cares.#SilverRush2015 raised $130,019 for Mitchell's Journey.

In the coming months we’ll share where that money is going. We plan to support PPMD, MDA, some local families as well as continuing to help with education and awareness. 

Above all, Mitchell’s Journey is about more than the disease that took my son's life ... is a journey of hope, help, and healing. 

 

STAR WARS WITH MITCHELL'S JOURNEY*

For those who live in the greater Salt Lake area, Mitchell's Journey is hosting a Star Wars movie event TOMORROW Saturday, December 19th at 3:20 PM. It will be held at the Jordan Commons theater in Sandy. We have invited a host of DMD families to come for free so they can enjoy the much-anticipated movie together. 

We still have tickets available for those want to join us. If you are interested, you can contact info@mitchellsjourney.org.

About 15 minutes prior to the movie (around 3:05 PM) we will show a short presentation with highlights of 2015: what Mitchell's Journey accomplished, what we did to support PPMD, MDA and some local families with DMD as well as other important milestones in our journey to help others. We will also share our plans for 2016. There will be a very special thing shared during this short overview that I can't wait for these kids to see.

It should be a great event in memory of Mitch and in aid to families who struggle to find hope. If you can, please join us.