Monday, October 13, 2014

I'll Raise My Hand: A Glimpse into the World of Duchenne Muscular Dystrophy

Rainy season arrived in Georgia, like a guest who knows her way around your home and comes without a call or invitation.  She's started pulling golden-freckled buckeye and sunburned dogwood leaves down, arranging them like a patchwork quilt along the roadside.  We decide to take a walk--my suggestion--with March, the blonde service-dog that belongs to her son.  The driveway's slick--I wasn't expecting that, and I watched her struggle to balance while March eagerly pulls on the leash. 
I'll take him, I offer.  She doesn't hesitate to pass me the leash.  She's a carrier.  Her muscles don't always want to do the things she'd like them to. 
And she's talking--not coming up for air.  Telling me her story.  Their story.  The story that demands to be told because it frames their life.
Once they were two teens in love.  Once they were just a couple who attended church and oversaw the nursery ministry and had four kids.  2 beautiful girls.  2 handsome boys.  Once.
And she knew things weren't right with the 3rd.  Not right away, but soon.  He didn't go to the bathroom like the others.  And she's a mom.  A seasoned mom by the time he came along.  So she knew. 
And no doctor should ever question a mother who just knows. 
No matter how much or how little education she has.
No matter where she's from.
No matter what she looks like.
No matter how she dresses.
If a momma knows, then she knows.
But he did question.  He did ignore.  He did pass off as insignificant that thing she knew was important.
Time snuck by.  They were busy, schooling, and raising, and churching.  And when he played basketball, he didn't run as fast or throw as high. 
But it was the stairs of all places where they finally realized, where they fully saw.  The stairs in our church.
Stairs I've climbed hundreds and hundreds of times.
Stairs my children--my two boys--have skipped up and hopped down.
Stairs with carpet worn from strong, healthy limbs trodding and tromping over them.
He was so slow that the senior ladies were passing him.
That's when they knew.
That's when light bulbs flashed and their souls insisted on having some answers.
There was blood-work.  There were tests.  An orthopedist, a neurologist. There were words sent out into the air like tiny grey helium balloons left to float in their minds until labs came back and doctors were sure.
Reckless phrases were let to fly too.  Hopeful things like, "He'll be fine."  Giant yellow-balloons that they reached for, wanted to cling to.  Because who wouldn't cling to the happy-yellow balloons that promised sunshine and resolution over the silent, slippery grey balloons floating like grenades threatening to engulf life as you know it.
And 8 months after the quest for answers began in earnest, a phone call came from the city with 3 words that would change their lives.
3 words that would turn everything upside down.
Everything inside out.
3 words that would peel the skin from their bodies and leave them naked, raw and bleeding if you really want to know.  And even that doesn't express what those 3 words really did to them.
Duchenne Muscular Dystrophy.
She says it rocked her and ravaged her husband.
She says before her son had been born she'd been prompted to pray more fervently for him than the first two.  Compelled to pray for him, even before conception.  And now she understands why.
We're walking.  March is pulling.  Leaves are floating graceful and quiet to the earth because time refuses to be still.  She continues to tell me the story, recalls the details.
Details of heartbreak.
You don't forget those kinds of details.  They're invisible tattoos over your eyeballs that color everything you see, over eardrums that muffle everything you hear, over lips that filter your phrases, and sometimes suck the very oxygen from your lungs.
And she tells me the date.  I'm ashamed  because even now, a few days later, I can't remember it.  But she does.  She knows them all.  When he was diagnosed.  When he went on prednisone.  When he began to need the cane for walking.  When he got his first chair.  The day they got March, the service dog.  She remembers it all.
She uses words that I don't understand even after going home and looking them up on Google.
Distrophen Gene
Gene mapping for diagnostics.
And while I listen I'm thinking,
She's an expert.
She's an expert in the disease that will slowly and systematically attack her son's muscles.
And the heart?  It's a muscle.
And you don't live without a heart.
And while I was becoming an expert in gardening for the backyard novice, she was becoming an expert in the disease that will demand her son.
And I want to cuss.
Every profane, hateful word I can muster I want to fling at that disease that mars a child's future with a best-by date.
No word is strong enough.
March pulls at the leash; he's strong-willed and determined.  A good match for her son.
Her son who is weak of muscle but Hercules of spirit.
There are twice weekly therapy appointments.  I knew about them for a long time.  She'd mentioned them before.
But on this day she'd come to my house--a rarity for her son--and I saw what was involved in just getting inside the therapy building.
There are two ramps involved.  One that allows him to exit the van and another that allows him to enter my home.  A strip of plywood in between because even in his high-tech chair, the pea-gravel walk-way sucks his wheels down like quick-sand.
And for those few moments when his wheels are swallowed by a few inches of decorative pebbles, I think how his life,
their life, the entire family--all 6 of them--has been sucked into this disease.
Every therapy appointment means dragging out ramps, rain or shine.
Every church visit means the ramps.
His younger brother slings them around like they're rag dolls because he helps.
They all help.
Life doesn't stop.  You just find ways to move along with it.
They move along.
An addition to their home, a bathroom that allows him to get in and out with his chair.  A bedroom to suit his needs.  A ramp that stretches across the front of their home like a banner announcing, Someone with DMD lives here.
They have birthdays--yearly markers that for them, don't so much indicate how old their child has become, but how much time they may have left.
They celebrate holidays knowing with each one that passes, they are closer to their last with him.
They take turns attending church.
She can't get to the gym anymore. She can't leave the house to get there. Even though she's a carrier, and her blood-pressure's high and the doctors want her to go for stress, for health.
As if a gym membership could ever erase the strain of DMD. 
She walks on a tread mill at home. 
She'd walk a million miles if he could just take a few more steps.
By now we're walking up a hill, and she's still talking, but her breathing's heavy with exertion.
Still, she's walking.  I'm walking.  Her son isn't.
She hasn't slept through the night in years.
Literally years.
Because someone has to help him turn over.  Someone has to help him to the bathroom.  Someone has to listen for him.
People give them a gift certificate to a restaurant, and it's nice to go out.  We want you to have a break, people insist. 
But you don't take a break from this.
It sits, like an unwelcome intruder, at the table with them through the meal.
And it screams the entire time.
Because it can, and they're powerless to stop it.
And no one else can fully hear the scream that echoes inside their head.
Not one single other soul on the planet knows the horrific hollering of DMD but the families that live with it.
And there are no fancy headphones, or spiritual phrases, or brilliant blogs that can silence it.
And God forbid you offer a well-meaning platitude or suggest they pray for healing.  As if they haven't?  As if they haven't pleaded and begged the God--who they still hope in and cling to--of the universe to just
They're a mother and a father.  Of course they have. 
And yet, she says to me, We wouldn't have gotten through this if it hadn't of been for the promises of God.
When there are no human words, His Words, His promises still their souls.
I'm humbled because I've said Though He slay me, yet will I trust Him, but she lives the words.
Every moment of every day.
While I'm deciding if my son will play soccer in the fall, they're deciding if they'll take theirs off one drug or keep him on it.  It could lengthen his life.  But it might not.
Life and death choices sit squarely on their shoulders like iron yoke on a pair of oxen.
While my boys haven't been sick in two years, and I can't remember their doctor's name, her son has a team of doctors and a point man.  She says these people become their family, the doctors and therapists.  The therapist who notices when her son can no longer pull the trigger on a Nerf gun, so he purchases her son a battery operated one that weak fingers can manage.
And thank God for health care professionals who get it.  Who care.  Who genuinely want to help.
I feel so dumb.  I tell her so.  I understand so little.  I grapple with understanding how it is passed down, try to grasp how it happened.  
She's so kind, tells me I'm not dumb.  It's complicated, she says.
That's putting it mildly.
It's hell on earth.
It's the realization of the curse that began with Adam, and they are the unlucky recipients.
We reach the top of the hill, and she's panting, but undaunted.
That's not surprising.  She is always climbing now.  Her life is a hill.
Her husband and other children?  They climb right along with her.
He posts real and raw glimpses on facebook, and I sit at home, read them, and pray.
Because what else can I really do?  What else can be said?
They're all painted in various shades of DMD.
The younger brother tells my son that he is his best friend.
His best friend.
It takes the wind out of me because my son has hung out with him three times.
Because who has time for sleepovers and parties when you're going to therapy or home recovering from therapy or you've been running him to and from the bathroom all day because it's one of those days?
And when is the laundry gonna get washed?
Who's going out and buying groceries?
Who's cooking?
Who has energy because who has slept?
Who is helping the other kids with their schooling?
Who is researching new treatments?
Who is maintaining their marriage?
Time's not their friend.
We're still walking and meet a neighbor, out with his dogs.  She chats happily with him about March, the service dog that makes their family laugh.  The neighbor admires March.
But I admire her.
Because she's still standing.
DMD has colored them, but it hasn't defined them. 
She has this laugh that makes her eyes squint and her cheeks turn bubble-gum pink.  And for the life of me, I'm amazed how she can laugh.
And he's a jokester--her husband.  A dry sense of humor that will catch you off guard like a deer in the middle of the road and leave you feeling had in a good way.
He gave my husband a spare set of drill bits a year or so ago. 
Because they still think about other people.  Their lives go on.
One daughter's in college and loving it.
The other daughter is well too.
Wikipedia says this:
Duchenne muscular dystrophy (DMD) is a recessive X-linked form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and eventual death.
That 1 in 3600?
That 1?
He has a name.
It is Brandon Smith.
He loves the Georgia Bulldogs, cars, video games, and Zaxby's chicken.  He has a family who love him, who fight for him, and he's pretty darn good at Liar's Dice it turns out.
We finish our walk, and they stay 'til dark that day.  It's the longest outing he's had in a while.
As they drive away, we're all waving--our hands raised up in the air, a luxury I've always taken for granted.
Once, during the game of Liar's dice, I stupidly offer her son my hand for a high five when he successfully bluffs.  He doesn't respond.
DMD holds his hand in his lap.
But I'm raising his hand here.
And I'm raising mine too.
In honor of Brandon,
his mother, Melissa,
his Father, Jim,
his sisters, Kelley and Britney
and his brother, Nathan.
We can all raise our hands for them.  Because isn't that what they did for Moses, and isn't that how these battles are truly fought? 
Here's how.
Give to research
Pray for a cure.
Give to this specific family.  (Click HERE to donate RIGHT away!)
They need a reliable van that accommodates his chair and will get them back and forth to medical appointments.  For it to offer everything they need, it will cost nearly $27,000, and they are around half-way there.  You can simply mail a check to: 
The Brandon Smith Van Fund
c/o United Community Bank
P.O. Box 398
Blairsville Ga 30514
Share this blog post in the hope that others will raise their hands with us.
Pretty please, won't you raise your hand with us?

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