November 7, 2012
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.
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