I know it comes from a good place, but sometimes she just needs to back off and accept that I’m capable of doing things for myself.
Yes, my heart isn’t what it should be – but not everything is about my heart.
I’ve painted for every reason there is. I’ve painted when my sister pisses me off, when Lucy drives me crazy.
I paint when I’m happy, when I’m sad and when I’m scared.
I paint when I feel love and also when I feel loss.
But I only paint for me.
I know I’m depriving Mum of something by not showing her what I’m putting on all the canvases she pays for, but I need this, and I need it to be mine alone.
Everything else in my life is public property – my health, my body, my life… it’s all controlled by something or someone else.
It’s on a schedule and there’s nothing I can do to alter it.
It’s been this way since I was little, and even though I’m okay with it for the most part, I need this for me.
I control my art. They’re my feelings, my visions and my reminder of everything I’ve been through.
I know one day they’ll be seen by others – either I’ll gain the courage to share my work, or I’ll die, and they’ll see them then. But until either of those days come, I’m keeping the lock firmly in place on the door.
Leanne
1996 (Three years old)
It’s so much worse this time than it was the last.
It’s hard enough to watch your sleeping baby drift off into unconsciousness, but a screaming three-year-old is so, so much more distressing.
She couldn’t talk or walk or do anything much the last time she was operated on, but it’s all so different now.
She can not only say ‘mumma’, but she can hysterically cry it as she writhes in fear against the hands that are here to help her, not hurt her.
That’s the thing though, in order to help her, they do have to hurt her. And I have to stand back and allow it to happen.
I know it’s for the best, that this operation, referred to as the ‘Fontan’, will do so much to improve not only her quality of life – but also to extend her life too.
She’s been poked and prodded, sedated and dressed for surgery and now, finally, she’s being put under anaesthetic.
I hold her hand as the medication takes her into a peaceful sleep.
It’s only then that I let the tears fall.
I have to stay strong for her while she’s watching. I know full well that if I fall apart, she will too.
“Thank you, Leanne, we’ll take it from here.”
I glance back down at my baby one last time. I whisper that I love her and I’ll see her soon before I leave the room.
I’m once again so grateful for Dr. Ellis – I’m not sure I could leave my precious little girl in the hands of someone I didn’t trust – but I know I can trust her. She’ll do everything she can to create the best outcome for my daughter.
I wander back out the hallway and into the room we’ll spend the next five or so hours in. We are allowed to leave, in fact it’s been encouraged – the nurses have suggested that we go out and get ourselves a decent meal or have a sleep as one of us will be glued to Violet’s bedside when she comes out, but I don’t think either one of us could stomach food or rest right now.
I can’t imagine looking at a menu or making conversation. I’m right where I need to be. Right here, as close to my little girl as I can get.
I drop into the seat next to Shaun and neither of us says a word to the other.
We don’t need to – we’ve been here before, and I don’t doubt that we’ll be here again.
She won’t stop crying, and honestly, I don’t blame her. I’d probably be crying if I’d been through what she did two days ago.
Nothing is working to settle her.
We’ve offered her new toys, books, and movies, but she’s refused all of it.
Shaun has bought Auggie in this morning to see if she might be able to distract her sister for a few minutes, but it’s been to no real avail.
There doesn’t seem to be anything in the world that can soothe my little girl right now.
I’m at breaking point myself – it’s awful having to watch your child in this much distress.
She’s only three years old… she shouldn’t be dealing with this kind of thing.
It’s not fair. Her whole life has been a struggle – a battle to stay alive and she deserves to catch a break.
My body is starting to shake as my emotions threaten to overwhelm me. Tears are pooling in the corners of my eyes and I have to turn around as they begin to fall. The last thing I need is for Violet to see that I’m not coping.
Shaun’s arm slides around my waist as his mouth finds my ear.
“Go and take a break,” he whispers so only the two of us can hear.
I don’t need to be told twice. I walk out of the room on shaky legs. I go just far enough that I can’t hear my daughter’s cries and collapse into the nearest chair.
I sit there for what feels like forever – my head in my hands as I try to figure out why.
Why her life is destined to be such a challenge when it could have been so simple instead.
I’m so deep in the thoughts inside my own head that I don’t even notice Shaun until he’s right next to me, gently shaking my shoulder.
“Lee, you need to come and see this.”
His expression is one of disbelief and I’m on my feet, moving in an instant.
I can’t hear any screaming or crying as I approach the door and I’m so intrigued about what’s finally calmed her down that I have to stop myself from breaking into a run to cover the final few steps.
I burst through the door into the silent room.
I can understand the look on Shaun’s face as I take in the scene in front of me.
Both of my beautiful girls are sitting on Violet’s bed, and there’s paint everywhere – but for the first time in over forty-eight hours, she’s relaxed. She’s not tugging on the tubes and lines that are poking out all over her body, she’s not thrashing around restlessly, nor does she have tears streaming down her face. She’s not been the least bit interested in lollies or ice blocks, but the brush in her hand – that certainly has her full attention.
“Want to try some yellow?” Auggie holds out the pot of yellow paint to her sister and my heart melts.
I stop in the doorway and lean against the frame, just watching the magic in front of me.
“August pulled out the art supplies and she just stopped,” Shaun murmurs from next to me. He too, seems content to just watch.
“Violet really likes to paint, Mummy,” Auggie announces proudly.
Violet stops painting, and I freeze, but instead of beginning to cry and scream, she holds up the painting so I can see.
She’s smiling. Really smiling – dimples and all and I’ve never seen a sight more perfect.
“It’s beautiful, baby,” I whisper.
She goes back to her work as though she hasn’t got a care in the world.
Shaun and I stand in the doorway; both of us watching each stroke of the brush heal something inside our little girl.
Violet
Present day
Lucy and I have the best-friend-silent-communication thing down pat. Most of the time we only have to make eye contact briefly to know what the other thinks about something.
If eye contact isn’t quite cutting it, code words or half sentences that make no sense to anyone but the two of us usually does the trick.
It’s been like that for as long as I can remember.
We started doing it mainly to make sure Charlie didn’t know what we were talking about, but we quickly learned that it was a really easy way to piss Auggie and her friends off – so that soon became our main focus.
It’s always been my duty as little sister to try and annoy my big sister, and since Lucy doesn’t have any siblings, she’s taken on her own role in the game t
oo.
We might technically be classed as adults now, but it’s still not any less satisfying to make Auggie’s blood boil today than it was ten years ago.
Lucy and I are blasting Aqua’s ‘Barbie Girl’ over the sound system and reliving our younger days by dancing around the living room to our old favourite song.
I know we’re far too old to be carrying on like this, but honestly, that just makes it all the more fun.
I’ve missed out on a lot of my childhood with my illness, my limitations and my mum’s rules, so I’ll be damned if I’m going to let my sister’s attitude and social expectations stop me from making up for some of it now.
August is back home from school for the weekend with a group of friends in tow, including her latest boyfriend. The girl she’s brought with her is an absolute bitch – there’s really no other word for it. She took one look at Luce and I in our old trackies and t-shirts, and our total lack of makeup and gave us the ‘bitchy girl’ glare.
Auggie’s new boyfriend is hot and older, but then they usually all are, and he looked at us the same way – like we were nothing more than a couple of annoying teenage sisters.
Well, ‘boyfriend of the month’, challenge accepted.
Lucy leaps up on the couch and does her best impression of Barbie talking to Ken at the same moment that August storms into the room and hits the pause button on the sound system, swiftly cutting off our song.
I don’t even bother with an attempt to conceal my laughter and neither does Lucy. In fact, we’re both almost at the point where we’re laughing hysterically.
“Would you two give it a damn rest. I have company,” Auggie hisses at us.
“I have company too.” I smile sweetly at her.
“She does not count.” She jabs a finger in my best friend’s direction.
She might be being incredibly rude, but she’s right. Lucy hasn’t been classed as a visitor here virtually ever, but that’s not the point.
Lucy shoots me a ‘shall I mess with her?’ look and I nod eagerly in response.
“We’re just listening to some jams… you know ‘chillin’,” Lucy drawls, and I know full well she’s ripping the absolute piss out of Auggie. “You’re probably not cool enough to understand, so go run along.”
When we were younger, anytime August had friends over, they’d shut themselves in her room, refuse to let us join in, and state something along the lines of what Lucy has just taunted her with.
“Urrrrggghhhh!!” Auggie shrieks and stomps her foot – actually stomps it. “You two losers are impossible!”
She storms out of the room, leaving us in fits of laughter.
I know we’re being immature, but I really don’t care. It feels so good to act young and carefree again – even if it’s just for one Saturday afternoon. Auggie will get over it, she always does, and tomorrow I’ll go back to acting like the rational adult I really am.
Lucy sways her hips dramatically as she struts over to the sound system. She hits a few buttons and S Club 7’s ‘S Club Party’ blasts out of the speakers.
“Oh yeah!” I yell over the music. “This is why we’re friends.”
Leanne
1997 (Four years old)
The girls have always been close, but never quite like this.
They’re like two halves of the same piece.
They might only be four years old, but both Linda and I know that we are witnessing something special.
They play together like they’ve been doing it forever. I guess in reality, they have.
Ever since the day Lucy was born, they’ve been shoved together for play dates, but ever since Violet’s last operation around a year ago, it’s been less like they’re being forced and more like they’re being drawn together.
They rarely go a day without seeing each other and when they do, they pick up right where they left off the last time.
Even though it’s a rare occasion that Violet ever stops talking, her and Lucy somehow seem to be able to communicate without any words at all. Their brains are so in sync it’s almost as though one knows exactly what the other is thinking and vice versa – it’s an incredibly powerful thing to witness.
Like just now, as they play Barbies and Linda and I drink coffee. Violet couldn’t find the other pink high heel shoe her doll was missing. Lucy wasn’t even facing Violet, and no words were spoken, yet when she came across the other pink shoe, she simply reached around behind her, holding it out. Violet took it without a word exchanged between them.
I’m starting to wonder if their brainwaves are on some secret frequency that the rest of us aren’t privy to.
I can’t even begin to understand their bond that’s more like sisters than friends, but I’m certainly grateful.
Violet deserves to have something in her life that’s natural and easy – even just one thing that doesn’t involve a struggle or a fight, and watching the two of them now, I think she might have found it.
Violet
1998 (Five years old)
“What’s that?” Amelia, one of the girls in my class points at the mark running down my front as she asks.
“It’s my zip,” I answer cautiously.
No one else in my class has a zip. It’s just me. Not like at the hospital or the group that Mum takes me to sometimes… everyone there has a zip.
I glance around the other girls that are getting changed in the small room. I don’t know why none of them have scars.
That’s what Auggie calls them, scars.
“What is it?” she asks as she stares.
“It’s from when I was little and they had to fix up my heart.” No one at school has ever asked me this before and I don’t really know what I’m supposed to tell her. “It’s called a scar.”
“Ohhh… I have a scar too,” she tells me as she holds up her arm and shows me the small mark on her elbow. “I got it when I fell off my bike.”
I lean in to get a better look. It’s just a tiny mark; it’s nothing like the big one I have, but it makes me feel a little better.
Maybe some of the other kids do have scars like mine too.
“Does that hurt?” She points at my chest again.
I shake my head and pull on my t-shirt so she can’t keep looking at it.
“Not anymore. It did when I was little I think, but it’s okay now.”
“What’s wrong with your heart?”
“It was broken,” I tell her while I stuff my wet towel into my swim bag. “The doctor had to fix it.”
“I had to get an injection once, you know. I didn’t even cry,” she tells me proudly.
I’ve had lots of injections too.
“It was a really big needle and they stuck it right here in my arm.” She points to a spot up by her shoulder.
“I hate injections,” I tell her.
“Me too.” She nods really fast.
I like that we both hate injections. That means we at least have something the same.
We walk back to class together and she tells me all about how she got the scratch on her leg from the cat at her grandma’s house, but I’m sort of busy thinking about why I’m the only one at school with a broken heart.
Leanne
“How come none of the other kids at school have a zip, Mum?”
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 ch
ildren 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.
My Heart Needs (The Heart Duet Book 1) Page 3