A LETTER TO MY SON

Yesterday was a day of laughter and smiles, memories and gratitude. Before the sun was about to set I asked my oldest son, Ethan, if he wanted to go on a quick adventure with me. He said “sure!” and we drove off in search of an empty field. I had suspected we’d find some unique, natural light as a storm had broken and the sun was beginning to fall behind the hills. Sure enough, we chased the light and saw a most unique sight. I couldn't help but think this photo I took of my son a metaphor for a great many things.

Ethan and I started to talk about life. Often, on his own, Ethan will bring Mitch up in conversation. Talking about our fallen family member is neither forbidden nor encouraged … we allow our family to talk about whatever, whenever. If something on their mind or heart, they’re free to speak it without judgement, prejudice or impatience. 

He said, “Dad, I think I know why I was born into this family. Well, at least one of the reasons …” Ethan thinking deeply about his present and his future, continued, “I think I was supposed to have Mitch as my brother so he could teach me things I needed to know.” Ethan loved Mitch; they were the best of friends and had a lot in common. When I think of the many tender mercies along this journey, the pairing of these two young boys as brothers is nothing short of divine. They did so much for each other. Though I frequently sorrow over the loss of Mitch, I am eternally grateful he was part of my family’s life.

After our father-son adventure last night, we retired to our rooms. I was awoken in the middle of the night on another matter - and I didn't really go back to sleep. I thought to write my son a message the likes of which I wished had been written to me when I was his age. These are some of the things I wished I had known at a younger age:

SEEK PURPOSE OVER PLEASURE
Seek purpose over pleasure. Pleasure and momentary happiness are always, always fleeting; as opposed to things eternal, like purpose and meaning. If you seek after purpose and meaning, you’ll learn to see past hardships and sorrows; undaunted by troubles you’ll encounter today or any tomorrow. 

THINGS MAY GO TERRIBLY, HORRIBLY WRONG
Despite your best efforts, life will be hard. In fact, it may get more difficult than you have a mind to imagine. Things may go from bad to terribly, horribly wrong. Just remember you are eternal. You are not your body – you are a soul capable of a greatness that, as yet, you do not have a mind to know. Every mortal moment is an education to your soul. Listen, watch and learn. And, if things go terribly, horribly wrong … remember that, in the end, all things will give you experience and will be for your good. Just hang on. Even if only by a pebble. Hang on.

HURT PEOPLE, HURT PEOPLE
You’ll invariably meet people in your life who’ll try to hurt you. These people will confuse the darkness in their own hearts for your motives. Always remember what Anias Nin wisely observed: “We don’t see things as they are, we see them as we are.” You may encounter some who foam at the mouth in rage toward you. Though bizarre, ignore them. They will be as a lit match: full of fury and fire for a moment, but short lived. Let there instead be a fire in your soul – not of hate and fury, but of love and light. It may blind those in darkness, but will help those with sight. Not for any reason should you hide your light.

BE KIND, NOTHING ELSE MATTERS
Be gentle and kind to others. Your little brother taught our family that at the end of the day, if you are unkind, nothing else you do in life will matter. 

YOU ARE LOVED
Although the skies may draw black as night and storms may threaten to devour you … know that you are loved: both by a mother and father on earth and by heaven above. You are, dear child, utterly and completely loved.

This and so much more, I would write my son to prepare his mind and heart for the for the years to come. 

My son Ethan’s journey is inextricably woven with Mitchell’s Journey … and not because I write here, on Facebook. Though I write intimately of my grief journey, our lives at home are not saturated in sorrow. Rather, we are happy, moving forward and finding purpose in each day. Ethan’s journey is enjoined with Mitchell’s Journey because he was his brother and his life and death has altered the course of ours. In fact, Mitchell’s Journey is everyone’s journey who might choose to take something from it. 

As John Donne wrote, “No man is an island” … to his insightful prose, I would add we are all part of something so infinitely grand … a spiritual ecosystem so majestic in scope and purpose … were our eyes unveiled, we would finally understand things as they really are and we would weep tears of love and gratitude. We would love our enemies, do good to those that hurt us, and fall on our knees in sorrow for those who we might have hurt. We would accept our life's struggles as a necessary crucible for growth and change.

 

TO FORGIVE IS TO LIVE

It wasn't long ago my dear wife came into my basement office and handed me a sealed envelope. It was another breadcrumb left behind by our tender son that had been sitting in a small stack of papers waiting to be organized. On the front of the envelope was Mitchell’s handwriting in purple crayon addressed to his best friend Luke. As my wife gestured me to open it, my hands trembled a little. Actually, they trembled a lot. This undelivered letter was from Mitchie’s last real birthday (April 29th 2012).

As I opened the envelope and then the carefully folded paper, I felt that all-too-familiar lump in my throat begin to grow. Swallowing suddenly became difficult and the air became as thin as Jupiter's. The last person to touch that paper was my dear son – and my fingers trembled with grief. Mitchell’s sweet letter read, “Dear Luke, I am so sorry. Will you still be my friend? I really want to play with you. :-) I really want you to come to my birthday party this Friday.”

Beneath the hand written letter were balloons for those he invited or near to his mind. Included were his brothers and sister, and Derik and David (two young boys who live just down the street). Floating above the other balloons were two; one for Mitch and another for Luke – as if to symbolize their special friendship and olive branch. As if his carefully drawn artwork weren't enough, Mitch re-traced his letters with different colors to show that he really cared. I love children. 

Mitch and Luke almost always got along, but because they were human they also had disagreements from time-to-time. Clearly, this was one of those moments. A childhood indiscretion was noted, a soft petition for forgiveness was made … and my heart swelled to see the innocence of children on display. 

In the grand scheme of things their disagreement was hardly a speed bump … but to Mitch, a young boy who treasured his relationships, it was a mogul turned mountain and he wanted to make it right. Luke, was ever the faithful, forgiving friend to Mitch and they always seemed to bounce back quickly if there was ever a disagreement on either side. 

I’ll never forget when Luke stood at the foot of Mitchell’s bed the evening before he passed away to say goodbye and share how much he loved him. That was a moment that brought me to my knees and broke my soul into smithereens. Never had I seen a more powerful gesture of brotherly love among humans. I pray that I never have to see such a sight again.

I admire the absolute goodness of children. If only adults could be as grown up as our little ones are at times. Emma Goldman wrote, "No one has yet fully realized the wealth of sympathy, kindness and generosity hidden in the soul of a child. The effort of every true education should be to unlock that treasure." At least to me, this handwritten note from my son (a letter that could have been written by any one of your children), is a master class in what it means to be human. Mitch and Luke taught me through crayon and pencil that to forgive is to truly live.

Any more, it seems the older I get the more I find myself trying to unlearn what the world has taught me and re-learn what children demonstrate so naturally.

A LETTER TO FAMILY | THE END IS NEAR

November 7, 2012

Dear Family,

I tried to keep this short but failed.  

About 7 years ago I sent you a letter with a heavy heart concerning Mitchell’s diagnosis.  Today, Natalie and I write you with an even heavier heart as we are forced to face that dark and lonely abyss much sooner than we expected.   We imagined this place in our minds, trying to prepare emotionally and intellectually … and truthfully it is bigger and darker than we could have possibly imagined.

Somewhere on the other side of this hell is the Heavenly promise of peace and reunion – but that’s a lifetime away and the prospect of death and separation from our young boy who wants so much to live, cut us deeply. It’s easy to talk of God and life after death in Sunday school, but to come face to face with it is bewildering.
— Christopher M. Jones | Mitchell's Journey

Mitchell’s heart has been prematurely destroyed by Muscular Dystrophy.  Our cardiologist told us that he is at risk of instant death and if he has any event (ventricular tachycardia) with his heart at all, he won't survive it.  This wasn't supposed to happen until his late teens.  What’s scary is the velocity of his heart’s deterioration – which our specialists say they've never seen before. 

Today Natalie and I sit with Mitch on the edge of an invisible cliff.  He can't see it, but my wife and I can - and the mouth of the abyss is yawned and inching to devour our son.  Yet, Mitchell looks out into the vast horizon unaware, and envisions a long, bright future ahead of him.  In his little mind, he is already making big plans.  He wants to build a home next to ours with a tunnel connecting our basements so he and his dad can watch movies and make popcorn.  He wants to work for his dad when he's older.  He talks about his own kids one day and how he’ll raise them like we raised him.  As he points to his vision of the future with youthful enthusiasm and a zest for life, he doesn't realize that he sits on the outermost edge and the ground from under him has crumbled away into the darkness – and his little body is hanging on by a pebble.  What Mitchell doesn't understand is the beautiful horizon he sees is only a mirage and in reality the sun is setting on his own life.

Mitchell is too young to know what’s happening.  If he knew how close he is to completing this mortal journey, he would be terrified.  And we can’t bring ourselves to let him know the mortal danger he faces.  And we won’t.

I write you today not to seek pity or sadness – but to alert you to his situation and invite you when you see him next, to give him a little more attention and love than usual.  We don’t know how much time we have with him, but the hour is late and midnight uncertain, so we want him to feel loved and appreciated during whatever time he has left. 

At 10 years old, Mitchell still believes in Santa and he’s so excited for him to come this year.  He loves to ride on his grandmothers yellow 4-wheeler and play video games.  He loves tickles, soft blankets and taking pictures of sunsets.  He loves vinegar, big roller coasters and exploring the outdoors.  His life has been rich with a few close friends who adore him and have made his young life as good as any young boy could hope to have.  For this, we are deeply grateful.

Recognizing we are on borrowed and uncertain time, we are going to race to help him enjoy a few more things this world has to offer before mortality overcomes him.

We are also petitioning to get Mitchell a heart transplant.  This will not cure him - but has the potential to give him a little more time with us.  Because there are ethical issues giving a healthy heart to a terminally ill patient we have high hopes but low expectations.  The ultimate decision is not ours to make, but belongs to a transplant committee And while we understand the ethical dilemma, we would feel less-than-diligent if we didn't do everything we could to keep our son alive.  In the menatime we are exploring every legitimate medical option available – but due to the severity of his heart condition, which has become overwhelmed with scar tissue. Anything other than a new heart will be problematic and largely ineffective for him.  Without a heart transplant, death for Mitchell is almost certain by 14 – but we have been warned that he could be overcome at any time.  Our cardiologist is greatly concerned for Mitch.

To be clear, Mitchell is not on life-support.  Nor is he in the hospital.  And for all intents and purposes he would seem the same as you remember him.  But the important stuff, the things you can’t see, are crippled beyond repair and failing.

Death for Mitchell, we are told, will likely come without warning.  Perhaps there is some comfort in the fact it will happen fast – but in the end, I hope he doesn't realize it when it happens.  I hope it happens in his sleep after he’s been tucked in and given a million nightly kisses and feels that he is loved beyond words ... that his spirit drifts away, unafraid.

Somewhere on the other side of this hell is the Heavenly promise of peace and reunion – but that’s a lifetime away and the prospect of death and separation from our young boy who wants so much to live, cut us deeply.   It’s easy to talk of God and life after death in Sunday school, but to come face to face with it is bewildering. But alas, we are grateful to know there is life after life ... and we have seen tender mercies in our family, even in the midst of our pain.  While there are many today who have abandoned belief in God, we stand resolute … with an absolute knowledge of Heavenly Father and Jesus Christ.  We have seen Him work in our lives; warning us, preparing us, and lifting us when we hardly have the strength to stand.  We remain grateful for the Atonement of Jesus Christ and its healing, transcendent power.  As C.S. Lewis once said of suffering, “Heaven, once attained, will work backwards and turn even [agony] into [glory].”  This we know.  

As we process all that is happening and the tender pains of losing a child, we have felt a quiet whisper that Mitchell was never really ours in the first place, but he is on loan to us from the Father of us all.  He, like each of us, will return to Heavenly Father with a perfectly executed life experience filled with hardship and happiness; all designed to refine our souls for greater purposes.  But it still hurts ... so very much.

You’re welcome to follow Mitchell’s Journey https://www.facebook.com/pages/Mitchells-Journey/192859897410346 where we are posting photos, videos and updates on his condition.  It is not our practice to impose our situation on others – so we will likely not write you again until Mitchell has passed.  It could be tomorrow, in a few months – and no more than a few short years.  The velocity of his sharp decline has any life expectancy predictions impossible to make.  Even in the past few months, with medical treatments to stabilize him, he continues to decline.  All we know is things are getting bad, and fast.  In the meantime, we will be posting his peaks and valleys between now and whenever our sweet son departs.

Your prayers are welcome.  Your visible love and affection to him are deeply appreciated - he recognizes your kindness, however quite and shy he may seem, and it means a great deal to him.  

Thank you for being such a wonderful family.  Our cup, while cracked and tattered by adversity, continues to run over.  We are blessed.

With broken but hopeful hearts,

 

Chris & Natalie

LETTER TO FAMILY: MITCHELL'S DIAGNOSIS

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Dear Family,

Just this Monday our son Mitchell was diagnosed with Duchenne Muscular Dystrophy (DMD). We had to hear it 3 times from our doctor before we began to understand what that disease is and what it does to the body. We are devastated, bewildered, sad beyond words, and scared.

 

The prognosis so far is that Mitchell will be in a wheelchair within the next 4-5 years and this disease will eventually take his life by his mid-teens. DMD is irreversible, progressive and it is terminal.

 

What is so difficult for Natalie and I is that unlike cancer where patients can often go into remission with treatment, his disease will progressively and methodically get worse. There will be no breaks for him. His muscles and body will atrophy and deteriorate and as this happens he will experience a myriad of other physical complications until it takes his life. What we are hearing is that he probably only has a few short years before we notice a marked decline in his physical abilities – which are already stunted because of his condition. Today, knowing what we know (after seeing the doctor), we see some of the things he does with a different perspective - and we are now recognizing what were before silent indications that this disease was already taking grasp on his little body.

 

As we prepare for Mitchell’s gradual physical descent, we sit on the edge (as it were) of a dark and lonely abyss . . . frightened and trembling . . . not so much for ourselves but for Mitchell. There is a long journey ahead for my family, especially for Mitch.  He will go places where we will not be able to follow; but we will be beside him and behind him: holding him, loving him, kissing him, and cheering him on.  At some horrifying point, he will comprehend that this progressive disease will take his life … and at that moment, he may be like I am today, trembling at the knees and breathless – bewildered by what is before him – scrambling to find a way out and a hope for a cure. I hope and pray I can be strong for him – but today I am a jellyfish.

 

Something happened a few years ago and I don’t completely understand why . . . and I suppose in time that it will be revealed; but, since the day Mitchell was born, I have had a recurring and persistent impression that his life on this earth would be short. This feeling came long before this devastating news about his disease – and when we had no reason to believe such a thing. Over time I told only a few people about this impression (Mom, Natalie’s parents, my wife, and a few close friends – I even remember telling some of you). But for reasons I don’t completely understand at this point – I had this persistent uneasiness about him. I now see (at least) that our loving Heavenly Father wanted me to know something was wrong. And indeed – something is. He warned us . . . in effect prepared us to some degree. And if He did that, He will also carry us places we don’t have the strength to go ourselves.

 

We will teach Mitchell (and our other children) about the Plan of Salvation and the love of our Savior of Jesus Christ and foster an environment where his testimony will flourish. And as he confronts the reality of a short life on this earth – we want him to be prepared for the next life. And that will be the greatest gift we can give him.

 

We love our little boy – so very much. And while Natalie and I are in the wake of every parent’s worst nightmare – we will eventually learn to stand tall for him and be a guiding light as he navigates a short and difficult life.

 

I am grateful to have learned something of the Atonement – and while I have much to learn about that sacred topic, I know enough about the hope it provides to keep from sinking.

 

Love Chris & Natalie