Every Last Beat Read online

  The big metal ladle I’m washing slips from my grasp and falls into the sink with a loud clutter.

  She’s only five and a half. I wasn’t expecting to have to talk to her about this just yet.

  She knows she’s different to her siblings and she’s never seemed particularly bothered by it, but I can tell by the quiet curiosity in her voice that she’s beginning to question things now.

  I shake the bubbles off my hands and turn around to face her.

  She’s sitting at the bench, perched up on a stool, writing out the spelling words that she was given for homework this week.

  Seeing her sitting there like that, her brain ticking over, it makes me so unbelievably grateful. There are so many children with her condition that aren’t as fortunate as she is. I know she’s still been dealt an incredibly rough hand, but all things considered, she’s nothing short of a miracle.

  As surprised as I am that I’m having to answer this question so early in her life, I’m also quite frankly a little shocked that it’s happened now – this is the most ‘normal’ Violet has ever looked; with her clothes on anyway.

  Only a few months ago she was put under anaesthesia, yet again, and had a pressure valve that was created during her last operation – known as a fenestration, closed. Ever since then her colour has improved hugely, and her oxygen saturation levels are the closest to normal they’ve ever been. It might not have been open-heart surgery, but it’s made a huge difference to Violet.

  “Where’s this question come from, hon?”

  She shrugs, not looking up from the piece of paper that she’s scrawling the word ‘the’ onto over and over. “None of the kids in my class have a zip.”

  I know it’s her heart that has the issues, and not mine, but right now my own feels like it’s trying to leap out of my chest.

  “Did one of the kids at school say something?”

  “Amelia… she asked me what happened.”

  I feel ice slide through my veins, I know Amelia is only five years old, but if she said something to upset my little girl, I’ll be speaking to her mother.

  I take a deep breath and remind myself not to overreact. I need to stay calm and composed for Violet’s sake, even though on the inside I’m anything but. “Was she not very nice to you?”

  She looks up at me. “No, she was nice.” She goes back to her spelling. This time the word is ‘and’. “She had a little scar on her arm, but it’s not as big as mine.”

  Her words are so pure and innocent, I begin to relax. Nobody was mean to her, not today anyway. She’s just curious, and understandably so.

  She’s a smart girl, she was bound to notice that she doesn’t look the same as her classmates in every way, or that she can’t keep up in a running race, or that she can’t swing on the monkey bars like all the kids her age can.

  I should have prepared her better for these questions.

  “What did you tell Amelia?”

  “I just told her, you know… that my heart’s broken.”

  The casual way in which she says it brings tears to my eyes.

  I turn back around and busy myself with putting away a pot until I can get a grip on my emotions. Just the idea that she thinks of herself as broken, devastates me.

  I do my best to treat all my children equally, but there’s times when it’s just not possible. Violet always needs an extra layer of clothing to keep warmer than the others, she can’t stay outside in the cold like her siblings can, she tires more easily, and she can’t ride her bike for as long.

  It strikes me suddenly that maybe I’ve been doing the wrong thing by trying to treat them all the same way… because they’re not the same. All three of them are very different children, and I’m sure they’ll continue to be different for the rest of their lives.

  I make allowances for Auggie’s drama queen antics – I have no problem telling her that she’s like no one I’ve ever met before, yet I feel bad making Violet feel like she’s a true individual.

  I guess in a lot of ways we’ve been striving for ‘normal’, but that’s not fair on anyone, least of all Violet.

  I should be celebrating Violet’s diversity and giving her the tools to deal with those differences, not trying to make her fit a mould – she cuts her own mould, that girl. She always has, and if I can figure out how best to support her, hopefully she always will.

  I’m not sure how I’m meant to explain this to her, but I have to try.

  “Everyone is different, hon. No two people are the very same.”

  She drops her pencil and looks up at me with her big blue eyes. “But they’re all the same. They all don’t have a zip.”

  My heart breaks for her, it really does.

  She’s going to be faced with this her whole life, and I doubt it’ll get any easier for her.

  Children can be cruel, but I can’t tell her that. She sees the good in people and expects the same in return.

  That’s one thing I fear – that one day circumstance will harden her, and that she’ll stop seeing that goodness everywhere she goes. That just might be worse than watching her go through operation after operation, so I know I have to choose my words carefully.

  “Okay, so you know how Max from your class has glasses?”

  She nods.

  “That makes him different. Nobody else in your class has glasses.”

  “But he can take them off, then he’s just like everybody else.”

  She’s sharp – she doesn’t miss a thing.

  “But if he takes them off, then he can’t see, can he?”

  She nods again. “I guess.”

  “And Stuart, he’s got that bright red hair that nobody else has got – and you’re just like half your class with your brown hair.”

  She smiles at that and it saddens me that she’s been reduced to finding comfort in something as trivial as hair colour.

  “And don’t forget Bella,” I point out.

  Bella is a down syndrome girl at the kids’ school. She’s in August’s year and she doesn’t let a single thing bother her.

  “I like Bella, she’s really funny.”

  I smile down at my sweet, loving girl. “She is funny. And she’s different too. Just like you, and me and everybody else. You might be different at school sometimes, but you’re not different when we meet up with the Heart Kids.”

  She doesn’t say anything, but I can tell she’s thinking it through.

  She smiles so big I can see the gorgeous dimples in her cheeks. “If Amelia came with me to the Heart Kids group, she would be different and we’d all be the same.”

  She’s exactly right.

  Difference is nothing more than a matter of perspective.

  Chapter Eight

  Violet

  Present day

  “But I haven’t got any friends at school.”

  Lola, one of the little girls I’m spending the afternoon with tells me. Her bottom lip drops and her eyes well with tears.

  I feel for her, I really do.

  “How come?” I ask as I sit down next to her.

  I’m too old for the Heart Kids group now, but know how vitally important it was for me when I was younger, so now I volunteer and spend time with the kids who are experiencing the types of things that I did while I was growing up – that I still sometimes am now.

  It’s an all too real possibility that not all these children will make it to be my age, so I know it’s important that I give back what I can – this battle is a hard one, and it’s certainly not made any easier by losing friends.

  That’s what everyone here is – they’re friends; some are more like family, and while that’s an incredible thing, it often doesn’t translate into finding friends within the rest of the world… and that seems to be the problem Lola is having.

  She’s a really special girl. She’s fourteen, but she seems a lot younger than the years on her birth certificate.

  She’s been diagnosed with ADHD – something that isn’t uncommon in children
with heart defects and those that have had surgeries as infants. She’s a late developer, even more so than I was, and she’s very small in stature.

  I know she gets a hard time from her peers because although she’s small, her personality is huge – and a lot of young people don’t seem to know what to do with someone who is a little different.

  Lola is outgoing and fun, and she’s got the best attitude about her situation of anyone I’ve ever met. I know she’d be a great friend. She is a great friend.

  I’ve met her best friend Jen, from outside of this group, more than once, but unfortunately the two girls don’t go to the same school and that’s been tough on Lola, especially as she’s reaching her teenage years.

  I’ve been lucky over the years. I’ve always had Lucy right there with me. But I can recall the isolating feeling if she were ever away sick or on holiday.

  “They all make fun of me.”

  I know how that feels too.

  Kids can be really cruel.

  You hear people say you should just ignore bullies… that they’re just looking for a reaction and if you don’t give them one, then they’ll just move on.

  There’s some truth to that I’ve seen. It worked just fine for Lucy when we were younger, but in my experience, it made no difference – they made fun of me whether I cried or not.

  I wouldn’t say I was relentlessly bullied as a child because of the defect I was born with. It wasn’t anything to that extreme, and I often wonder if it weren’t for my heart condition, if a bully would have just found something else to tease me about anyway.

  I certainly wasn’t the only kid that got picked on – so I can’t blame my heart or my scars for it entirely, but it certainly gave them an easy target on the days I was the chosen victim.

  I remember so clearly the way they’d point and laugh, usually two or three of the ‘mean kids’ would gang up on one person.

  They made fun of Evelyn for her crooked teeth.

  They taunted Mike about his stutter.

  They picked on Mia for wearing glasses.

  I was teased for the scars running down my chest.

  I remember exactly how it felt. I still, to this very day, feel insecure about how I look – their chants and taunts sometimes still ring in my ears when I look at myself in the mirror. I know that they were just young kids themselves, but I was old enough to know better and so were they.

  To be honest I can’t recall when it all started, but I do remember the moment I decided to do something about it.

  I tell Lola to take a seat and I tell her about the day I stood up and shared what I’d been through with the world.

  ***

  Violet

  2004 (Eleven years old)

  It’s speeches time at school again – or as I like to call it, the worst day of the year.

  I usually do my best to be one of those lizard things that changes colour to blend in and not get noticed – but it’s kinda hard to do that when you have to stand up in front of the whole class and talk.

  I’ve written a really good speech this year, I know I have, but if I could pay someone to read it out for me instead of having to do it myself, I would.

  Mum has gone on and on about how important this is going to be, so my classmates can understand me better, and I know she’s probably right, but if she turns up in the back of the class with a video camera in her hand like some type of crazy dance mum, I am seriously never speaking to her again.

  I even tried faking a sickie to get out of coming to school today, but for once, Mum saw right through my act.

  Just my luck…

  So here I am. Waiting for what feels like the end of the world.

  Ella-Marie is talking at the moment, and I’m pretty sure she said her speech is about her pet rabbits, but I can’t focus on anything she’s saying because I’m up next and I’m freaking out big time.

  My palms have gone all sweaty and I wipe them on my jeans to try and get rid of the feeling.

  I know it’s going to be my turn in a minute. Everyone is clapping for Ella-Marie as she finishes, and I force my hands to do the same.

  “Violet.” Mrs. Foreman glances around the room until she finds me with her eyes. “You’re up, dear.”

  I force myself to get up out of my chair. I grab my cue cards and walk to the front of the room. My legs are shaking so much I don’t know how my knees aren’t smacking together and knocking me over.

  I glance nervously at Mrs. Foreman when I get up there and she gives me a smile and an encouraging nod of her head.

  I take a deep breath and stare directly at the back wall of the class room. If I keep my eyes off everyone, I might just make it through this without losing it.

  I catch sight of movement out of the corner of my eye and when I look over, I see Lucy giving me a double thumbs up from her seat. She’s got a huge smile on her face – unlike me, Lucy loves speech day.

  She picks up her own set of cue cards and taps them with one hand whilst pointing at the ones I’m holding.

  She’s telling me to get on with it.

  I guess I may as well, there’s really no getting out of it now.

  I take another breath and look back at the wall.

  I tell myself that I can do this. I just have to look at the wall, then my cue cards, then back at the wall and back at my cue cards…

  “I’m Violet,” I tell the class. “I know that you all know that already, but what you probably don’t know is what it means to be Violet – what it means to be me.

  I was born with a heart condition – something called Hypo-plastic Left Heart Syndrome, which is also known as HLHS.

  Having HLHS means that the left side of my heart didn’t develop properly before I was born and that meant it couldn’t pump the blood that I needed around my body.

  When I was only a couple of days old I had to have a surgery to try and fix some of my broken parts. A special doctor, called a cardiovascular surgeon opened my chest so she could work on my heart. I had another similar operation when I was just a baby, and then again when I was about three years old.

  When I was a baby my skin was a funny bluish-grey colour, I had trouble breathing and I had no strength to wake for milk or to cry. I slept a lot.”

  I brave a look and see that I have the attention of the whole class. No one is drawing on their workbook or writing a note for their friend. No one is staring out the windows or fiddling with their hair.

  All eyes are on me.

  I quickly look back down at my cue cards before I lose my nerve and stuff it all up.

  “My surgeon’s name is Dr. Ellis and without her fixing me up the way she did, I wouldn’t have lived longer than a few days, maybe a week or two at most.

  She connected my heart up so it would let me live. It’s still wired differently to all of yours, and even after all my operations, it doesn’t work as well as yours do.

  I’m not the same as you, and that’s why I can’t run as fast, or swing on the jungle gym. It’s why I come last in the cross country every year and why I don’t swim in the pool unless it’s a really hot day.

  I have to be really careful with germs, because if I get sick it takes me a really long time to get better. My heart isn’t as strong as most people’s and it takes a lot more work for my body to fight off bugs.

  I also have to watch out if I get a cut. I take a lot of medicine every day that helps to make my heart’s job a little bit easier. There’s one I have to take that makes my blood thinner, so that my heart doesn’t have to work as hard, but that also makes me bleed a lot if I get hurt. I had to spend the night in the hospital when I was nine because I got a bleeding nose and they couldn’t make it stop.

  All up, I’ve spent close to a whole year in the hospital in the twelve years since I was born.”

  I feel like I’ve been up here talking all day, but in reality, I know it’s probably only been a minute – maybe two.

  “I have to visit specialist doctors a couple of times a year
so they can check on my heart and other organs and make sure that everything is still working okay. They do tests on my body and make me run on a treadmill to see how quickly I get tired.

  I’ve had a couple more operations since I was a kid, but they weren’t open-heart surgeries – they’ve just been little procedures done through something called a cardiac catheter. The doctor inserts a thin tube in through your neck, groin or arm and they can use it to figure out and treat small problems. I’ve had this done a few times already and I’ll have more as I grow up.”

  My hands shake even harder as I near the end of my speech.

  “One day, when I’m older, my heart will probably get so worn out that it will stop working. When that happens, I’ll need a heart transplant – that means that I’ll have to get my old heart taken out and have a new one put in, but until then I’m just doing my best and living each day that I’m given.

  So, if you see the scars on my body, or notice that I’m out of breath, now you know why… I might not be the same as all of you, but I’m me – I’m here and after everything I’ve been through, I’m just happy to be able to say that.”

  I slide my very last cue card back into place as I finish.

  There’s silence, not one person has clapped for me and I don’t know why – maybe nobody really wanted to hear about things like operations and hearts being removed from bodies.

  I take a deep breath and look up at my class.

  There’s about six or seven of them with their hands in the air.

  They have questions.

  I know it’s not what normally happens after a speech, but when I look to my teacher for help on what to do she just smiles and nods again.

  I guess I’m answering questions then.

  I point to Joel first.

  “Where do they get you a new heart?”

  I didn’t want to talk too much about this – it’s not a very nice thing to think about, but he’s asking, so I guess I don’t have much of a choice but to answer him.

  “When someone dies, sometimes they can use their heart and other body parts for donation. They have to find someone that’s a match for my blood type and size.”