Flying Dreams

Every so often I get stuck in a song.  Every so often I get stuck on my son’s disease. Every so often these sticky situations intersect.

Below are the lyrics to Flying Dreams,  written by Kevin Hearn.  I’ve met Kevin a number of times, and he’s always been kind and sweet to my superdork, inappropriate fangirl self.  When we spoke last summer, I made sure to tell him how much I appreciated some of his artwork, and one picture in particular.  The drawing depicted a girl I presumed to be his daughter in a wheelchair.  His daughter has a developmental disability, and as you know, children with special needs are near and dear to my heart.

My son has a neuromuscular disability,  and I often find myself seeking distraction.  Obsessed has such a negative connotation; I’m not obsessed with MD, not like I once was anyway. My son’s disability is mild they say, and his doctor is pleased with his lack of progress.  In his case, a lack of progression is a good thing!  Still, it’s never not one of the top five things on my mind.  In the narrow-mindedness of muscular dystrophy blinders, I sometimes find myself looking for connections that aren’t there. Sometimes I find them.

If you could walk, if you could talk
Where would you go, what would you say to me?
I love the sound of you movin’ around
Laughin’ and dreamin’ next to me
But I’ll never know what you see
I hope it’s a flying dream
Over fields, houses and hills
Over hospitals, shopping malls and ravines
Over walls, transcending it all
Love finds itself right where it longs to be
And I’ll never know what you see
I hope it’s a flying dream
You center me, you help me to see
What is important and what I should just let be
To blow away on garbage day
With candy wrappers and cigarette packages

Through the dark days, the heart careens
Longing for flying dreams

There’s no more leaves, the raindrops freeze
And glisten like teardrops in the the trees
Sink or swim, still sinking in
I’ve been swimming deep in the blues these days

Ever since fate intervened
And took away my flying dreams

Flying dreams
Flying dreams

The first time I listened to Flying Dreams, I felt sure Kevin had written the song for his daughter, and the tears flowed.  I wish I were possessed of the talent to create something so beautiful to honor my own child.  I wonder if he knows how much I worry over him.  I wonder if my kid knows that his and his brother’s well-being are at the heart every decision I make.  I wonder if he knows how much of my grey matter he occupies.  I hope so.  And I hope not.

When I consider the future, I never don’t consider a future with crappy MD taking from him.  Maybe this worry now means preparedness for the future.  I hope that his needs are no different than any other man’s–life, liberty, the pursuit of happiness, you know. . .  Future me’s vision of my future son is fuzzy.  All I know is that I see a shaggy, long-haired dude who’s really tall, really tall, and looks a little off-balance as he trods too heavily.   See, in my future, he is still walking.  His hands shake.  I can’t imagine what type of occupation he has or if he has found love.  I can’t imagine with whom he passes his time, but I hope his people are understanding and patient.

If we were ever to move residences, we’d seek a house with a first floor bedroom to ensure he has access.  It’s not that I want my kid to live with me forever because seriously, get out! But if the MD progresses to a degree independent living becomes impossible, he always has a home.  We have a dumb amount of life insurance, just in case.  I spend time teaching lessons he refuses to learn–carry one thing at a time, move deliberately and with intent, watch with your eyes before moving with your body–in hopes that some day, some day, those strategies engage before an emergency or injury occurs.

You don’t get to pick disease.  Fate intervenes; disability and disease choose you.  It chose my kid before I even knew I was pregnant.  You do get to pick your response to it however.  An empowering reminder came to me through this lyric–

You center me, you help me to see
What is important and what I should just let be

We’re coming up on the third anniversary of my boy’s diagnosis.  When I began writing here, it was merely an outlet, a distraction that kept me floating above a river of despair.  I really wanted to be pulled under back then, but instead I wrote.

I’m reacquainted with an entirely different Wendy as I reread some of my original posts.  I don’t obsess over every eventuality like I once did, I truly don’t.  Priorities emerge. This stupid disease has helped me “let it go” when things, and not just health-related issues, need to be let go or toned down at least.  Still working on that one though. . .  This stupid disease forced the hand of advocacy on my kid’s behalf, and it forced me to find a voice.  My voice will never sing beautiful lyrics, but it did help raise money for kids with muscle disease.  Even when I do feel like sinking, which would be way easier, I kick like crazy.  Not flying.  Breaking even.  Balance.

3 thoughts on “Flying Dreams

  1. Great song. One of my favorites from the release because of the simple and beautiful sentiment. I hadn’t seen that piece of art before and it is also lovely. Thanks for sharing. I love it when BNL writes about parenting. Peterborough and the Kawarthas is my favorite Jim song.

    Like

  2. Your voice, as always, is wonderful. Thanks for sharing the song–it’s lovely. And so much better than last month when I had Car Wash stuck in my head for days. I have no idea why, but it drove me to drink, Well, I would have been drinking anyway, but I’m just sayin;…

    Liked by 1 person

  3. Thank God for pop music, am I right? There’s a song to express every human experience and emotion, as if each was composed specifically for the poetically challenged among us (including yours truly)!

    Like

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