A message from C.F. White about Williams Syndrome
Share Your Heart:
Raising Awareness for Williams Syndrome
May is Williams Syndrome (WS) Awareness Month, and in particular the 18th May is the national gathering of families in both the US and the UK who live with someone who has this rare condition. I couldn’t let that pass without a mention, so here I am blog hopping as far and wide as I can to talk about WS and why it’s important to me, and my books.
Williams Syndrome is a rare genetic condition that affects one in twenty-thousand births and is caused by a spontaneous and random deletion of 26-28 genes on chromosome #7. The condition itself is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. But a far more fascinating trait that those who have WS share is their unique personalities. WS people are particularly friendly, overly social and have an affinity for music. In a nut shell, they are everybody’s friend, will talk the hind legs off a donkey and love a good boogie. Don’t we all, I hear you say. Well, not like these lot, I can assure you. I’ve been to many a party and gathering with them, because my son was diagnosed with WS at 3 months old.
It’s been a massive learning curve for me and my family, and we are still at the very beginning of this journey into special needs parenting. My little trooper has been through life-saving open heart surgery, ongoing painful and invasive hospital stays, constant appointments, whilst also having to deal with those who are not so understanding when it comes to children with learning disabilities. But I wouldn’t change him for the world. His WS makes him exactly who he is, and that’s a fun loving, hilarious, good-natured, upbeat little boy who is everyone’s friend. I can’t get through a Tesco shop without him having to stop every other customer to say hello and ask them how they are. He might even throw in a hug for good measure too. He’s a joy to be around and lifts my spirit on a daily basis. It doesn’t mean he’s easy to deal with, not in the slightest. There are downsides to having the condition as well as the ups. But I won’t dwell on those. Not here. Here I will be celebrating Williams Syndrome and all that has come with it.
So why am I telling you about WS and my son? Well, he’s pretty much the very reason why I started writing again. I used to write as a child and into my teen years, but then life took over and I never found the time anymore. Ironically, the moment my free time was ripped from me after my second son was born disabled, I suddenly found myself making the time. I had a lot of it when he was a baby―he never slept. And when I mean never, I’m talking never. He’d be up all night. So to keep myself amused whilst gently rocking him or pacing the living room whilst soothing him, I created stories in my head. Then, when I got the chance, I started writing them down. Slowly but surely, I was working on a couple of novels without really realising it.
My son is the very inspiration behind my Responsible Adult series of books. And, in honour of Williams Syndrome Awareness Day, Misdemeanor, Hard Time and Reformed are all going on a price promotion. So I thought I’d explain not only WS and why it’s a huge feature of the books, but also why certain things were written the way they were.
You see, being so overly social, so friendly, and not seeing the ill in anyone, a WS little boy made for a perfect character. Especially when giving him a bad boy big brother who has a past life full of juvenile delinquency and making him his sole carer. Because I defy anyone to not have their hearts melted by Flynn. And that was the whole premise behind the three book series. How this little boy sees the good in everyone, when many of us struggle to do the same.
All the characters in the book are flawed. Many are obviously flawed, others their flaws are skin-deep or buried beneath the surface. The whole idea was to show how these flaws make us human, and how Flynn sees beyond them all to the true person beneath. Because that is the beauty of WS. But that can also make these unique individuals extremely vulnerable in a society that isn’t as carefree and wonderful as WS people presume it to be. Like Micky says in Misdemeanor:
“He’s an eternal child. Sees the world like it should be in a fairy tale, minus the evil characters. Everything is bright and beautiful and everyone is his friend.” Micky hesitated. “It’s a real shame that life isn’t like that. Because a world full of Flynns would be the one I wanna live in.”
I wrote Responsible Adult as one book. Since publishing they have been separated into a three book serial. There simply wasn’t enough room in the publishing world to put all them all into one book. It means there is a cliffhanger at the end of book one, and I can understand the hesitance to accept this. But it’s done, and I stick by it. There are things that happen within the book that some might find upsetting. They weren’t written to offend, in fact quite the opposite. By the end of the three books, WS shines through. All characters grow, develop and maybe the world does become like the fairytale that Flynn always sees it as. Because that is how I want it to be―I want everyone to be accepted for who they are. Through living with WS, I’ve changed things about me, about who I was. Some of it has been done voluntarily, and some instinctively. Much like Micky does over the course of the three books.
Responsible Adult was my way of raising awareness for a condition that has taken over me and my family’s life. It gave me a chance to have a crack at writing again, within a genre I’d come to love, and it’s an extremely dear to me series of books. When people say your book is like your baby, well this is that and then some. Because my baby is actually in it. Something that I often times wish I hadn’t ever done, but also am proud that I did. I hope that those who have read it, have met Flynn, and have understood how he manages to brighten the life of his brother and everyone who comes into contact with him, can embrace what I had been trying to do.
This series is about having to grow up, having to make sacrifices, having to make tough choices, and having to take responsibility. Micky is nineteen and had to take care of his little brother after the tragic death of his mother. He’s already harbouring many a secret and had a past life of juvenile delinquency in a small town that he cannot escape from. Micky wasn’t ready, nor equipped, to be sole carer to a disabled child. And, although I am a fair bit older than he, and I, at least, made the choice to have a child, I still feel exactly like he does—juggling through life, making decisions and choices I feel completely unqualified to make. But that’s my lot as a mother. And that is Micky’s lot as a big brother. Sometimes I mess up, I do stupid things, say stupid things. I’m human. Like Micky.
If you would like to give this series a try, then Pride Publishing have beautifully accepted to honour Williams Syndrome Awareness Day by offering all three books at a price of 99p each on 18th May 2018. Link here: https://www.pride-publishing.com/serial/responsible-adult.
I hope that you might consider giving it a go, and perhaps look up the Williams Syndrome charities in both the UK and US to learn more and maybe offer some support.
These charities are solely run by the parents for the parents. They don’t receive government funding, they rely on donations. Without these charities, many families would be completely isolated in their communities and I salute the brilliant work they do in raising awareness, giving information and organising gatherings for all our WS people to chat, laugh and dance at. Just like we all need to do from time to time.
I’ll finish off by asking that we all try to be a little bit like our Williams Syndrome friends. Be nice. Be kind. Be friendly. And, using the WS motto, please if only for today, share your heart.
Thank you for listening and hosting me on your blog. I’ll leave you with the perfect picture of the perfect family J
Micky, Dan and Flynn from the Responsible Adult series.
C F White xx
Responsible Adult Blurb and Excerpts
Responsible Adult Serial
The Responsible Adult series follows bad boy Micky O’Neill as he attempts to better his life to bring up his disabled little brother. A past full of juvenile delinquency and living in a small town rife with idle gossip means Micky struggles to be seen as anything other than a no-hoper from the wrong side of the tracks... until he takes a job at the local supermarket and meets his boss, Dan, a university graduate and self-proclaimed shy, awkward bookworm.
Dan, older and burned from a past relationship, is the one person who sees through Micky’s tough-guy facade to the true heart underneath. With fear and mistrust on both sides, the two must steer their way through a complicated relationship where outside forces are determined to break them up at every turn.
Responsible Adult is a series about growing up and learning that falling in love always brings responsibility.
Misdemeanor (Responsible Adult #1)
“You can join us if you like. Enough to go around.” Dan pointed at all the food and drink.
Micky looked down, licking his lips, but shook his head. He glanced at the play park and Dan followed his line of sight to see the blond bloke by the swings surrounded by a gaggle of girls, one of whom he picked up in a fireman’s carry and proceeded to slap her arse. Micky snorted and turned back to Dan.
“Thanks, but I got Flynn.” He scrunched up his legs, hugging his knees to his chest and hung the glass down over the top.
“Your parents not around then?” Dan asked, voice full of concern.
“Nah,” Micky said with a shrug. “Mum passed away. A while back now. And Dad’s, well, Dad’s not round so much anymore.”
“Workaholic?” Dan asked, almost hopeful.
“Something aholic, yeah,” Micky said. He shuffled his feet on the blanket, bunching it up and flattening it back down. “He’s just not good to be around Flynn.”
“So you take care of him by yourself?” Dan asked.
“Wow. That’s…” Dan searched for the word. Three years spent lovingly studying the English language hoping to come into good use this time. “Commendable.”
“Not really,” Micky said, ducking his head. “Any sibling would do it.”
“I don’t know about that, mate,” Dan said. “My big sister can be a right cow. She would’ve left me on a doorstep somewhere.”
Micky chuckled. He didn’t pay Dan much attention, choosing to watch Flynn and Tamsin as she spun him on the seated roundabout. Dan watched them, too, for a bit, before turning back to Micky.
“He’s a character,” Dan acknowledged. “There a reason he’s so small?”
Micky finally turned his attention on Dan. “Yeah,” he replied, voice tiny and tight. He scraped his teeth over his bottom lip several times, dragging away the congealed moisture forming over them. “He’s got a condition. He’s a little behind in years, too.”
“Oh,” Dan said. He might have that etched onto his gravestone. “What’s the condition?”
“Williams syndrome?” Micky replied, then, with a shrug, shook his head. “Don’t worry. No one’s ever heard of it. It’s pretty rare. One in twenty thousand or so.”
“Oh,” Dan said. Again. For fuck’s sake.
“So, yeah, I’m sorry about earlier. I probably snapped at you.” Micky twirled the glass in his hand. “The friendly thing. One of the things he’s lacking is any stranger danger. They’re a bit overly social, if you know what I mean. Susceptible to being taken advantage of. Scares the crap out of me.”
Micky dipped his head, shaking it from side to side. He shuffled again and Dan sensed he was clamming up after having been so forthcoming. Dan didn’t want Micky to stop talking. He was strangely fascinated by him. It wasn’t just that the bloke was nice to look at, which he evidently was. But his voice had an undertone of something more and Dan desperately wanted to find out what that was.
“How else does it affect him?” Dan wondered aloud.
“Multitude of things.” Micky exhaled. He took a deep breath before responding any further. “Medical stuff like a weak heart. Had two major heart surgeries as a baby. Will probably need another one in his lifetime. He has stomach troubles. Bowel issues. Weak muscles. The eyes. Teeth. Hyperthyroid. Plus he’s got learning difficulties.” Micky’s eyes glazed over as he swished the glass in his hand. “He’s an eternal child. Sees the world like it should be in a fairy tale, minus the evil characters. Everything is bright and beautiful and everyone is his friend.” Micky paused. “It’s a real shame that life isn’t like that. Because a world full of Flynns would be the one I wanna live in.”
Dan paused for a moment, trying to take it all in. What Micky said. Flynn. The condition. The ideal. And how Micky described it all.
“I’m sorry you’re dealing with all that by yourself,” Dan finally said. “I had no idea.”
He’d just been lusting after his body all week. Now Dan knew the bloke had a soft, loving and caring side, what the hell was that going to do to him now?
Hard Time (Responsible Adult #2)
“I think you’re right,” Dan said.
Micky glanced up, finally looking Dan in the eye. Dan smiled and saw the ease of Micky’s shoulders. He nodded at Flynn.
“Wales would be good for him,” Dan explained.
Micky peered back to his brother and watched for a while. He breathed in deeply and scratched at the contents within his pockets. Dan could practically see the thinking process going on behind his eyes. He had to bite his tongue not to demand that Micky spill whatever was on his mind.
“We could go now,” Micky finally said, still looking out at his brother.
Dan glided the hand ruffling through Micky’s hair down to his back and let it drift away. He shuffled and searched his brain for a response. He seriously hoped Micky wasn’t suggesting what he thought he was. Running now could never be an option. He knew that. Micky would know that. The question was, he supposed, did Micky really care at this point?
“What?” Dan urged quietly.
“Fuck all this, Dan,” Micky said more forcefully and scraped his hands out of his trousers to slap down to his thighs. “Why wait around in fucking limbo, letting other people decide what happens to me? To him.” Micky waved a hand in Flynn’s general direction and turned to finally look Dan in the eye. “To us,” he stated poignantly.
“Micky—” Dan cautioned.
“What, Dan?” Micky scorned. “This place is toxic. For me. For Flynn. I’ve never really understood that until now. Until you.” Micky twisted to face Dan and glided a thumb across his cheek. “There’s a shit ton of bad memories on every street corner here. I need to start fresh. You said you’d always come find me. Or wait for me. But will you follow me?”
Reformed (Responsible Adult #3)
“I miss you, Dimples.”
Dan exhaled. Which probably sounded like a hurricane down the phone. At least Micky chuckled.
“I miss you, too, baby.” Dan curled his hand around the wooden pillar and squeezed, regardless of the splinters it could cause to his palm. “Real bad.”
“I’m going to get better, Dan. I promise.”
Dan blinked. Micky sounded like he was slurring, or that could have been the added distance and crackle of signal going in and out of range.
“What do you mean?”
“I’m a shit boyfriend. I know I am. When I get back, I’m going to be better. I swear to fucking God, when Flynn gets outta here, I’m gonna get my head screwed on.”
Dan stumbled forward down the front step, doing his utmost to get a better range of signal. Micky’s voice was garbled and not just because he was pouring his heart out.
“Micky, baby.” Dan sat on one of the wooden benches and rested his elbows on his knees. He was shaking. He didn’t like the way Micky was talking.
“And, y’know, screw you good and proper.”
Dan laughed, but it was drowned out by the raucous one that wafted from the open pub door when a man popped out to light up a cigarette. Dan stood and fumbled farther away from the entrance to the edge of the car park.
“Where are you?”
Dan scrunched up his face. He spun to look back at the Old Red Lion. He should tell the truth. But something in Micky’s voice made him twist and bundle farther into the darkened valley.
“At home. Just putting the rubbish out.”
Dan closed his eyes. There was a brief pause the other end of the line. Dan’s hand shook as he held the phone to his ear.
“I love you, Dan. I do. And I’m sorry.”
“Get home, Micky.” Dan trotted faster down the valley, heading toward home, not bothering to go back for the jacket he’d left on the pub chair. “Bring Flynn home. And we’ll talk it all out.” He practically ran the rest of the way. “I love you, too.”