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To everyone who has been following Mitchell’s Journey, to friends and family, and those in our neighborhood and ward who want to help, I want to offer a heart-felt thank you.  It is such a perplexing time for us ... and we don't know how to be helped.  So much of what is before us is far beyond anything anyone can do to fix.  But your personal concern, and the concern of others, has done much more for us than any temporal assistance could.

I had a sweet experience last month with a friend of mine who is a Bishop (a religious leader in my church). We have worked together professionally in the past and through the years he has become a dear friend.  As we sat in my office, he was asking about Mitchell and we both started to cry and he made a comment about "mourning with those that mourn" and in an instant those words that I had heard a million-and-one times growing up, took on a deep, rich and fulfilling meaning. As far back as I can remember I have always tried to be compassionate to others ... and if I couldn't directly sympathize I would deeply empathize with those who suffered. But being on the receiving end of that empathy ... seeing him mourn with me ... that was quite different and I learned a lot from that quite Spirit-felt exchange. Many of you, in your most sincere gestures (both public and private), have mourned with us and that has been remarkably strengthening.

While navigating the labyrinth of pain and sorrow, Natalie and I often talk about finding joy … and we believe it is all around us. I think joy is a natural byproduct of gratitude. It's so often the little things, if appreciated, that bring joy to life and amplify happiness. There is so much to be grateful for.  There are tender mercies all around us, every day.  

I've always struggled with the dinner prayer ritual where people say,  "please bless this food that it may nourish and strengthen our minds and bodies ..." or anyone who might say the same things every day in the same way.  I have expressly taught my kids to never do that - but rather to be very specific and genuine with Heavenly Father. When they pray they say "we are so very grateful for macaroni and cheese, we absolutely love it and are blessed to be able to eat it. thank you!" I have found this idea spilling into their personal prayers ... where they ask for less and thank Heavenly Father more for the little things they enjoy in life. They express gratitude for warm blankets, soft pillows and good friends.  And quietly, when they express gratitude for the little things, I thank Heavenly Father for their little souls and humble hearts.  I believe it is in recognizing the many blessings we already have that we find happiness. That isn't to say life isn't painful for us and that we wish things were otherwise - but our trials, when placed in the context of our blessings, seem to give us a much more balanced and joyful perspective.

Even in the midst of our deep heartache with our son's prognosis, we have seen God work in our lives . . . for which we are deeply grateful and we can find joy in the midst of our pain.

So when you reach out to us ~or others~ ... and offer genuine love and concern, [you] have already done more than we could ever ask.  And in our hearts we pray that it will be counted unto you as if you performed a million acts of service.

So in our suffering, we have come to understand the magnificent doctrine of "mourning with those that mourn" and the relief it can bring to heavy hearts.  After all, it is the battles that rage inside our minds and hearts that are in greatest need of others service - and that you all have done that so beautifully for us by extending the pure love of Christ.

Thank you.  Thank you for teaching us time and again this powerful principle of mourning with those that mourn.

To everyone who has been following Mitchell’s Journey, to friends and family, and those in our neighborhood and ward who want to help, I want to offer a heart-felt thank you.  It is such a perplexing time for us ... and we don't know how to be helped.  So much of what is before us is far beyond anything anyone can do to fix.  But your personal concern, and the concern of others, has done much more for us than any temporal assistance could.

I had a sweet experience last month with a friend of mine who is a Bishop (a religious leader in my church). We have worked together professionally in the past and through the years he has become a dear friend.  As we sat in my office, he was asking about Mitchell and we both started to cry and he made a comment about "mourning with those that mourn" and in an instant those words that I had heard a million-and-one times growing up, took on a deep, rich and fulfilling meaning. As far back as I can remember I have always tried to be compassionate to others ... and if I couldn't directly sympathize I would deeply empathize with those who suffered. But being on the receiving end of that empathy ... seeing him mourn with me ... that was quite different and I learned a lot from that quite Spirit-felt exchange. Many of you, in your most sincere gestures (both public and private), have mourned with us and that has been remarkably strengthening.

While navigating the labyrinth of pain and sorrow, Natalie and I often talk about finding joy … and we believe it is all around us. I think joy is a natural byproduct of gratitude. It's so often the little things, if appreciated, that bring joy to life and amplify happiness. There is so much to be grateful for.  There are tender mercies all around us, every day.  

I've always struggled with the dinner prayer ritual where people say,  "please bless this food that it may nourish and strengthen our minds and bodies ..." or anyone who might say the same things every day in the same way.  I have expressly taught my kids to never do that - but rather to be very specific and genuine with Heavenly Father. When they pray they say "we are so very grateful for macaroni and cheese, we absolutely love it and are blessed to be able to eat it. thank you!" I have found this idea spilling into their personal prayers ... where they ask for less and thank Heavenly Father more for the little things they enjoy in life. They express gratitude for warm blankets, soft pillows and good friends.  And quietly, when they express gratitude for the little things, I thank Heavenly Father for their little souls and humble hearts.  I believe it is in recognizing the many blessings we already have that we find happiness. That isn't to say life isn't painful for us and that we wish things were otherwise - but our trials, when placed in the context of our blessings, seem to give us a much more balanced and joyful perspective.

Even in the midst of our deep heartache with our son's prognosis, we have seen God work in our lives . . . for which we are deeply grateful and we can find joy in the midst of our pain.

So when you reach out to us ~or others~ ... and offer genuine love and concern, [you] have already done more than we could ever ask.  And in our hearts we pray that it will be counted unto you as if you performed a million acts of service.

So in our suffering, we have come to understand the magnificent doctrine of "mourning with those that mourn" and the relief it can bring to heavy hearts.  After all, it is the battles that rage inside our minds and hearts that are in greatest need of others service - and that you all have done that so beautifully for us by extending the pure love of Christ.

Thank you.  Thank you for teaching us time and again this powerful principle of mourning with those that mourn.

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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

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