The WHOLE WIDE WORLD should know there is a girl in central Florida with a beautiful smile, and an even more beautiful soul whose name is Emily and who is in very, very poor health right now. To say she is fighting Vascular Ehlers-Danlos syndrome would be serious enough; but for Emily, vEDS is just one small piece of a very complicated medical puzzle. Emily is only 18 years old but has spent a great deal of her young life in and out of hospitals due to the relentless combination of diseases she is battling.
What struck me cold and left me speechless last year, was reading a post on Care Pages in which she tells her story. She not only writes about her diagnosis with VEDS, but also of her life-long struggles with surgeries and ongoing complications and all with such an honest optimism that I found myself hoping with her; genuinely hoping – not just that she’d get home from the hospital that time, but that she’d experience a quality of life she’s been chasing for as long as she could remember.
There isn’t a single shred of self-pity or cynicism in the story that she tells, and in an instant I was acutely aware of my own petty, ridiculous list of complaints. Yes, I’d lost a husband to this awful disease; and yes, I’m fighting for my own son’s life in his battle with it . . . . but here before my eyes, staring back at me from my computer were the words of someone who’d only known life from within the walls of a body bent on destroying itself. And laced throughout this unbelievable story was a tangible, indisputable hope.
I subscribed to her page and have eagerly read every post her mother has written over what will soon be a year as she describes the ups and downs they’ve experienced; and, for a while it seemed things were going very well for her. But recently, the news has been getting progressively worse and I’m noticing a steadily growing knot in the pit of my stomach every time there is an update.
It’s easy from a distance, from a life still undisturbed by tragedy, to throw hope around like confetti or magic fairy dust. Saying things like, “hang in there” or “it’s going to get better” comes easily to many and for the most part is sincerely meant to encourage those who are struggling. But when the ground you’re standing on has vanished from beneath your feet more than once, words like those are empty and useless – the sound of them can actually become painful; and saying them is something that you’d never in a million years consider doing. Real hope on the other hand, is another matter altogether.
It is a precious, rare, and fragile thing;
it is a gamble on getting hurt-
on knowing damn well what the odds are,
knowing damn well that things don’t always work out,
and managing somehow to allow yourself to risk it anyway.
I suppose that’s the point of hope when you think about it. If it were as simple as saying “I know it’s going to be fine – there’s nothing to worry about ” well, then, you wouldn’t need hope in the first place, would you?
Who better than a young woman like Emily would understand the odds, the history of disappointments, the risk involved in letting herself hope? And yet, there in her own words, it’s unmistakable. Reading her incredible story, I felt the unfamiliar sprouts of hope growing in my own closely guarded and cynical heart.
To my own surprise, I began to envision a life for her, for my son, for the thousands of children and adults like her. For the first time in nearly 13 years I couldn’t hold back the hope. It floated up within me like a balloon finally released from the tight grip of a child’s hand.
Watching it take flight, I saw more clearly than I have in years that while I cannot control the battles that come, I can choose to keep my heart and my eyes open to the possibilities.
I am hoping for Emily’s recovery. I am hoping for her life to finally take off and blossom. I am hoping for her to know the freedom and quality of life she’s dreamed about. I am hoping for her mother and her father to see their daughter strong and healthy again. I am hoping for Emily to live. Not just to survive, but to LIVE.
There has been a lesson for me in these last several months as I’ve read their stories; and that is to remember that hope is never wasted; it is not some easily found nor easily kept trivial state of mind. It is an essential part of surviving any of life’s hardest things, regardless of how long or short our lives may be. It is as innocent as any dream we’ve ever held dear and flies in the face of all the ration and reason we work hard for as adults.
Though hope itself holds no real power over outcomes in our lives, it does hold power over our hearts and minds. Hope sets the tone for the way we live each mysterious day, all of which we spend in anticipation of the unpredictable , uncontrollable events awaiting us all.
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