Ten-year-old Mitchell Jones, who died, Saturday morning at 1:30 a.m. from a heart that had deteriorated due to Duchenne muscular dystrophy was a boy who belonged to thousands because his parents had told his story in the most personal terms on a Facebook page that had more than 60,000 followers.
His parents, Chris and Natalie Jones, believed the burden would be lightened if they shared their anguish-and so they did in photos, videos that include doctor’s reports and their vivid reactions and journal entries. People fell in love with this little boy, who had first been diagnosed with this ravaging disease when he was only a three-year-old toddler. Even that picture is preserved, a three-year-old cuddled in the arms of his mother who could hardly handle the news she had just heard.
Many complain that Facebook allows us to have relationships based on only a few word entries, giving us the illusion of intimacy while we stay tucked away riveted to computer screens. Yet in sharing Mitchell’s journey, the Jones opened their lives up in a way that seemed to expand community and humanity. Comments on their Facebook page reflect that those thousands who followed this heartbreaking story learned something more about faith, enduring tragedy with grace, and how to love their children with more intensity.
Maybe we are not as isolated as we think in this world.
In sharing their heartfelt difficulties and joys, Latter-day Saints online also talk of their closeness to God, something that impacts the lives of many.
Here are pieces of Mitchell’s journey from the Facebook page written by his father, Chris.
July 11, 2005
I’ll never forget the look of bewilderment on Natalie’s face upon hearing the diagnosis. I remained stoic and collected, but after leaving the doors of the hospital I stayed behind and sat on a bench that looked over the valley and wept.
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. And while there is a long journey ahead for my family (especially for Mitchell) . . . 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. And 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 – and 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.
He was so brave for such a little boy. I know all kids that go to school for the first time are brave – but Mitchell wasn’t the average kid. He was weak, easy to knock over, and the world was especially threatening to his safety than the average kid. We were proud of him for being so excited and so willing to do new things.
Mitchell’s drivers license for the Cub Scout pinewood derby. He thought it was pretty cool. 🙂
It’s curious how the little things can disappear so quickly. We took the kids on a photo shoot and Mitchell was lifting his arm to fly his space ship with his brother. Today, Mitchell’s muscles get tired from eating. The simple act of lifting his spoon to his mouth wears him out.
He can’t eat a meal anymore without his arms needing to rest. Needless to say, he doesn’t fly his ships like little boys do anymore. But he flies them in his mind, and together we create some pretty epic battles together.
A medical procedure that had Mitch scared. He is learning that being poked and prodded is going to be a way of life.
August 27, 2012
Natalie helping Mitch get up from the ground. He is getting weak enough that it is nearly impossible for him to do it by himself anymore.
So true: “It’s not the load that breaks you down. It’s the way you carry it.” – C.S. Lewis.
October 2, 2012
The greatest heroes aren’t extraordinary people with untouchable talents; they’re common people who make uncommon choices for the betterment of others. My friend, Jeff Winegar, offered to take my son adaptive skiing. He spent his own Saturday in the service of others (my son). Jeff is my hero. Thank you for helping Mitch feel the rush of winter wind on his face, the warmth of your unusual kindness, and the lasting memory you provided my boy.
October 12, 2012
Chining up. Sometimes a sad heart hides behind a happy smile.
October 31, 2012
This was the appointment that revealed how bad Mitchell’s heart has become. Evidently our cardiologist, who works with kids with Duchenne Muscular Dystrophy, has never seen anything this rapid. His cardiologist is very concerned and we’re trying to figure out what the next steps are.
November 5, 2012
Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.
~ Elizabeth Stone
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.
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.
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 meantime 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 breathtaking. 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.
Nov. 23, 2012
On November 21, 2012 we met with the transplant director and learned that Mitchell would be denied a heart transplant. We left the hospital. The hallway seemed so very long and Natalie carried her son with a smile, hiding her broken heart, so are not to frighten him. But fear was very much in us. Mitchell was given 6 months to two years…There is no exit…We see time differently. Time to enjoy the little things, the little conversations that make us smile. Time for the things that matter most before the setting son.
Jan. 10, 2013
You have within you more love than you could ever understand.
Jan. 22, 2013
About an hour ago Mitchell called me on the phone and said his heart felt really strange. I immediately ran upstairs to find him laying on his stomach in his bed with an unusual look on his face. As I knelt beside him he told me he has never felt like that before … that it was painful and that he was scared. His eyes welled with tears and seemed to look off into nothingness.
I thought I knew fear … but realized in this abrupt, uninvited moment that I simply had no idea. As I held my boy I said in my mind, “No no no no no, not now. Not like this. We’re not done, little buddy.” …
During this episode I could hear in my head, almost audibly, his cardiologist’s voice saying “If Mitchell has any prolonged arrhythmia, he won’t survive it.” It played over and over in my mind.
For the next 30 minutes I knelt beside him and gently caressed his hair, kissing his forehead and told him that everything was going to be okay as he drifted off to sleep.
Sleep, it seems, will come easier for him this evening than it will for his parents.
Feb. 10, 2013
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Mitchell and his sweet mother last night having a conversation before he went to bed … listening gently and loving her son deeply. Natalie continues to sleep at the foot of his bed to be there for him at a moment’s notice. There isn’t a thing she wouldn’t do for him … not a thing she hasn’t done for him. She has been his loudest advocate, his steady companion, his protector, teacher, loving mommy, and when everything in the world would seem to fall apart for him, she was there for him …. steadfast and immovable … gentle and comforting.
For times of trouble.
Feb. 12, 2013
Little Mitchell received a package of hearts and notes from neighbors, friends and members of our church. Mitch felt very special. We cried tears of gratitude when they were delivered. So many good people in the world. We are humbled to the core.
Feb. 13, 2013
Time is ticking. We can almost feel a brush of air each time the second hand jerks forward. This morning Mitchell’s Hospice nurse made her daily visit and his vitals are worse than yesterday. His feet are becoming pale blue and he gets dizzy sitting up. His chest is pounding so hard again. And our hands and hearts tremble.
“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.”
– Washington Irving
Feb. 14, 2013
Mitchell’s last birthday.
My sister spent a lot of time decorating for his birthday. It was so awesome. Eventually this ceiling looked like a thick forest of balloons each bearing a measure of joy. Until this moment, balloons were just balloons – but suddenly they had a magic about them. Something lifting and joyful.
Feb. 15, 2013
There sits on my dresser two pieces of paper, carefully folded, with hand-written instructions: one is for a mortuary, the second for a cemetery to purchase a piece of property I would give my life to not buy. I walk by these sheets of paper every morning of every day … I try to ignore them but in the back of my mind they are always there … waiting for me to open them. I dread that day.
On the other side of my home is my sweet son who looks to his parents for safety and protection. He trusts and has confidence that under our care all will be well with him. As a parent there is no greater anguish than to look your child in the eyes and know there is nothing you can do to save him.
Feb. 21, 2013
We are overwhelmed by the outpouring of love and generosity by so many people from all walks of faith and culture.You are, each of you, a testament to the natural goodness of humanity and we are humbled to our core. We also want you to know that Mitchell reads every letter from every person
Mitchell is fairly stable today. He threw up this morning (sign of heart failure) but was able to eat a little later and keep it down. His spirits are up and we are keeping him busy doing the things he loves. Our nurse told us this morning his vitals are stable considering his condition … for which we are grateful as we sort through the viability of an LVAD medical intervention. He peaks and crashes, however. Helping him laugh seems lift his spirits and forget about his headaches and not feeling well.
Here are a few photos of Mitch opening a present he received today from a dear friend of the family. A few weeks ago we were instructed to take photos of our faces and email him, not knowing why because it was to be a surprise. What Mitch opened were Lego people with our family members faces printed on each head/person. The first Lego he opened was of his dad, who had a small camera in his hand. Mitchell laughed and laughed … nearly screamed with laughter. It was such a sweet moment. Included in the Lego characters was also his aunt Sonya, who is very much part of his life. What a sweet gift. We were so touched, especially Mitchell.
Feb. 28 2013
Last night, just before bedtime, I caught Mitchell’s little brother, Wyatt sitting by his bed and kissing his hand. Wyatt loves his older brother so much.
Love is such an interesting phenomenon. When we had our first child I thought to myself “I love this child so much, it is impossible for me to love another human more than this!” In fact, I often wondered if I even had the capacity to love another person because the circumference of my love was bursting at the seams. Then, my second child arrived. And I discovered that I didn’t need to divide the love I felt for my first and share it with my second child. My love multiplied. And so it continued … with each child my capacity to love increased exponentially. Oh, the arithmetic of family … the arithmetic of God’s plan.
Yesterday all Mitchell wanted to do was cuddle.
All I wanted to do was freeze time.
March 1, 2013
For all intents and purposes my son is gone. He is here. He is breathing, barely. But in many ways he is gone. I don’t know if we’ll have another meal or conversation or smile … and that breaks my heart. At the moment it feels like the weight of grief is being held in suspension by the hope of one more … of anything.
March 2, 2013
Dear Family, Friends and Loving Supporters,
At approximately 1:30 AM (Saturday, March 2nd) our sweet Mitchell passed away.
Just as I had drifted off to sleep at around 1:00AM I had an impression that I should formally tuck him in (something he asks me to do every night). I got up from the floor, pulled his blanket over his chest, kissed his forehead and whispered into his ear, “Mitchie, this is Dad. I am tucking you in, just as you like it. Remember what we talked about … don’t be afraid, everything is okay. I love you, son. So very much.” With that, I kissed him on the forehead a few more times, pressed my face against his and squeezed his hand. With that, Mitchell passed away in less than an hour. I was so grateful to hear that impression and that I acted on it.I would hope that he heard my voice and recognized he had one last tuck and cuddle with his daddy and that it brought him peace and assurance.
Thank you to the Jones for sharing their story and their son with us. Safe journey, Mitchell. We will all miss you and we will endure better for knowing you.