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.

Lions And Tigers And Bears

Any trip to the zoo leaves me a trace sad. Except that one time Nikki and I met Bek at the zoo in Toledo and managed not to see one single wild animal, but did manage to crash the Barenaked Ladies sound check.  Contest winners?  Yes, yes we are. The Toledo Zoological Gardens are the home of #ketchupandmustard, so will always hold a special place in my heart.  Plus it’s an epic achievement to haul ass around a rather large zoo without catching one single glimpse of wildlife, wouldn’t you agree?  Ah, good times.

Last Wednesday, on my darn birthday no less, I shuttled a nearly dead bunny to the Humane Society, only for it to gasp its last breath about three minutes before our arrival.  Baby bunny had been hit by a car, the vet surmised, and its future was not bright upon impact.  She thanked the boys and me for doing the right thing to help Peter Cottontail, though our attempt was in vain.  This morning, rounding the corner back to our house, I found a dead bird lying on the alley sewer grate.  Mercifully, I spied the bird before Caleb the Wonderdog did, so was able to steer him away.  What is the deal with wildlife this week?

The Green Bay Packers are as near to a religion as I follow these days. Game day is a big deal where I live, and we do tune in.  Some games are straight-up events, parties with green and gold-themed foods and décor, but most often game day comes and goes with just the four of us around the TV.  My birthday falls on the equinox, meaning our days for outdoor opportunities are becoming numbered.  Baseball got canceled this morning, so we thought we would knock out a few hours at the zoo before Packers kickoff.  Strike while the iron is shining, and all that.

I wasn’t as sad about the animals as I typically get today, though the polar bear’s green patch of fur freaked me out a whit (algae from its habitat’s pool).  I was completely within myself sad as I watched my big kid trek around.  There are some days where MD kicks his butt a touch more squarely than other days.  Today?  He was so tired that he had to stop and sit every few minutes.  There are some days where his disease is in my face screaming out loud; the slap on my face from MD’s hand of reality stings acutely.

I sat with him outside the aquatic and reptile center because it was near the end of our visit and he had to sit it out.  Did he say that he wanted to sit it out?  No, he didn’t.  He offered a non-committal shrug when asked if he wanted to go in.  “Nah, it’s OK,” he mumbled.  Yeah, it’s OK, but it’s usually one of his fave stops, so I knew he had hit he wall.  Sunglasses were a welcome fashion accessory this morning, as they covered my leaking eyes.  I think my kid and I were both dancing around the 800 lb. gorilla in the room.  Technically it was an orangutan, but I’ve already massacred one metaphor here two paragraphs ago, so we’re sticking with gorilla.  We both pretended it was no thang.  He didn’t have the energy to keep walking; I didn’t have the heart to inquire and make him verbalize that.  Win/win?  Lose/lose?  Choose your own adventure.

I walked behind my three boys in a line at one point, watching as they goofed.  I had a notion to get a picture of the three of them lined up, but in the moment decided against it.  I was struck by something else.  My husband only just barely keeps his height advantage over the big kid now, and our younger son is not at all far behind.  It was a glimpse into the future–in the very, very near future, those roles will reverse–little one will likely be the tallest, big kid will be in the middle, and Tom will relinquish the tallest guy in the house title.

I was further struck recalling the blindness I’d clutched with all my might for eleven years.  Watching my older son amble around the zoo, I wept to myself.  How could I have been so blind?  How, HOW did I not see?  How did I believe for so long that he’d grow out of it?  His limbs are so long and so thin.  His muscle tone?  Well, there really isn’t any.  He is all straight, long lines, and I just don’t know how on this earth I imagined he would grow from his lankiness into a lithe and agile young man.  Pretending was nice, though I suppose I wasn’t exactly pretending everything was aces.  From little on, I knew something was up, so it wasn’t pretending I was doing.  What was it though?

I get an “F” in revisionist history this term.  I blame the Packers.  I blame the clear morning skies.  I blame the bear.  I blame my kid’s baseball game cancellation.  It’s easier than blaming myself.

<a href=””>Pretend</a&gt;

via Daily Prompt: Pretend