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.
Love Chris & Natalie
This is a photo of Natalie & my son about 20 seconds after the neurologist told us about Mitchell. We were still in shock.