Every Last Beat Page 2

  It almost feels like I’m not really living my life – my life wasn’t meant to last more than a few numbered days. I don’t know what to make of that sometimes.

  This feeling of disconnect could be because I’m not doing the things I want to do with my life.

  I don’t have much in the way of independence, I don’t have even an inkling of a boyfriend, and I haven’t gotten through hardly any of my degree… but even if I was finished it, I can’t imagine what I would possibly do with a qualification in business.

  All I want to do most of the time is paint, but I also don’t want to live at home with my parents for the rest of my life, however long that life might be, so at some point I’m going to have to consider getting myself a real job.

  I know full well that there will never be any pressure on me to achieve anything of any real significance; the pictures in the books in front of me have ensured that nobody expects anything more from me than survival –as sad as that is.

  I rest my head on mum’s shoulder and watch as she flicks through page after page of the memories of my existence so far.

  Chapter Three

  Violet

  Present day

  I flick the off button on the television; I’ve taken to religiously watching one of those shows about people that have managed to survive in extreme conditions or outrageous situations.

  The type of people, that in theory shouldn’t be alive. People like me.

  I’ve always thought of death as a fickle creature, it spares some who are so close to it, yet takes others that seem to be miles away.

  It’s a strange concept that a person can be alive and well one day, and then gone in the blink of an eye.

  Here one minute, gone the next.

  I know I’ll die one day – we all will, and although it seems that death’s chosen not to take me yet when it so easily could have, I know full well that tomorrow is a whole new day.

  This instance in time is all I’m guaranteed. It’s all any of us can count on if I really think about it.

  Some of us will get a long forever, others a shorter one, and there’s not a lot most of us can do to alter that.

  There are people out there who do what they can, and I’ve been lucky enough to cross paths with those who do have the power to alter, even just a little bit… and fortunately for me they’ve done precisely that.

  I owe my life to a long list of people, but there’s one that stands out above all the rest.

  The same surgeon who operated on me when I was only a few days old, and has been with me through every surgery I’ve had since.

  My parents, both of them, have her labelled with God status, and I can’t help but agree with them on this one.

  The woman is nothing short of incredible.

  I’ve heard the stories – I’ve seen the photos of how she saved my life on more than one occasion… and I know for a fact that if she hadn’t been there when she was, I wouldn’t be here today.

  It’s as simple and as complicated as that.

  As altered as my life may be, I owe it to her.

  ***

  Leanne

  1993 (Five days old)

  I look down at my tiny, beautiful miracle, defying the odds of survival with every beat of her little heart.

  I think about August, at home with my sister, Rita, and how my two birth experiences couldn’t have been more different.

  When August was five days old we were inundated with visitors, gifts and home cooked meals.

  It was an overwhelming bubble of bliss.

  My biggest worry back then was if I was going to get to sleep a full night ever again, and whether or not my milk supply was keeping up with August’s appetite.

  I’d give just about anything for those to be my biggest concerns at Violet’s five-day-old mark.

  Shaun and I are in the same place we’ve been for two days – ever since our little fighter made it through her first-stage procedure.

  I’ve barely moved from the side of her small bed. There’s nowhere else I’m needed more.

  Just the sight of food makes my stomach turn. I’m too stressed to eat. I know I need to, but I can’t seem to bring myself to do more than pick at something. My body needs it so I can keep expressing milk to be fed to her through the feeding tube that goes into her nose, but I just can’t stomach it most of the time. Since I’m not really eating, I barely need to visit the bathroom either so instead I sit, and I watch, and I wait.

  I glance around the room and my heart hurts for all these precious little babies.

  All the parents in here are hovering the same way we are. None of us want to be here, yet we’re all desperately clinging to the fact that we are.

  If we’re here, it means our babies are still fighting – that they’re still alive.

  Two doctors have just entered the room to do their rounds and instantly my nerves are kicked up a notch.

  We’re expecting them to remove the pacing wires from Violet’s heart today. They put them in after her surgery – they’ve been keeping her heart rate steady, but they can’t stay in forever.

  One of the doctors is Violet’s surgeon, Dr. Ellis. I owe that woman more than I could ever possibly repay her. She’s the reason our precious girl is here, defying those odds, alive and breathing, her heart still beating in her chest.

  I don’t know all the technical terms for what she did in that operating theatre a couple of days ago, but I’ve come to think of it as the temporary re-plumbing of Violet’s heart.

  It’s really not something I’m able to think too hard about… if, when we make it outside of these hospital walls, maybe I’ll worry about it all then. But today, I just need to focus on the here and now – I need to stay strong for my baby.

  “Mr. and Mrs. Miller, how is Violet doing today?” Dr. Ellis asks.

  Truthfully, I don’t know how she is, most of what the nurses say and note down on her chart goes well and truly over my head. I don’t know if it’s the medical jargon, or the pressure of the situation that’s doing it… I seem to be forgetting even the most basic of information; my stressed brain isn’t retaining things like it normally would.

  Whatever it is, I don’t have much of an answer for them, so I tell them the one thing I’m sure of.

  “She’s alive.”

  Dr. Ellis gives me a small, albeit sad smile.

  It really is one of those situations where it’s incredibly depressing that being alive is the biggest achievement we’ve got to report, whilst at the same time, it’s something I couldn’t be more grateful for – my little girl is here and alive when others aren’t.

  It’s all such a mix of emotions and feelings. Gratitude laced with anger, appreciation filled with despair…

  “I’m glad to hear that,” she replies as she scans over the chart that I’ve tried and failed to make sense of numerous times.

  “Everything looks good here. I’d like to go ahead and remove her pacing wires.”

  She runs over a few of Violet’s stats with Shaun and I and assures us that this is a routine procedure that is awfully common within the paediatric intensive care unit.

  I trust her completely, but I’m still terrified.

  While this might be a routine procedure for her, it’s certainly not for us.

  I can feel my anxiety levels rising as I watch her wash her hands and prepare her equipment.

  She cleans the site where the wires enter Violet’s small body before snipping the sutures holding them in place.

  She pauses, watching the rhythm of her heart beat on the cardiac monitor next to us.

  It seems so entirely wrong to just pull something out of a beating organ, but that’s exactly what she does, ever so gently, pulling in time with the rhythm of Violet’s heartbeat.

  My stomach lurches at the sight, and I’m grateful that there’s nothing in there to come up.

  Shaun is squeezing my hand so tight it almost feels like my fingers might crack under the pressure, but I don’t say a
word. I barely breathe as the entire line is removed from her little body.

  Dr. Ellis passes the wire to the other doctor whose name I’ve already forgotten, and I let out a deep breath of relief.

  That small lapse in time, where I’ve allowed myself to feel content is when it happens.

  The monitor that had been previously blipping away consistently and quietly is now ringing out in a piercing alarm.

  There’s something wrong. Something is seriously wrong right now.

  I glance down at Violet and see she’s turning blue.

  I can feel my lips moving but I have no idea of the words that are coming out of them.

  Times flashes in a blur but it’s also somehow in slow motion.

  I know that everyone is moving so fast around me, yet it’s like they’re all running like those girls on Baywatch.

  Someone must have hit the emergency assist button on the wall because a whole pile of people – other doctors and nurses, have burst into the room.

  I’m still speaking, maybe even yelling now as Shaun and I are dragged out of the room, along with all the other parents and families.

  The last thing I hear as the doors swing closed are the words, ‘I need to open her chest up’, and the sound of my own ragged breath.

  Chapter Four

  Violet

  Present day

  I love it at Lucy’s place.

  There’s no kid gloves here.

  Lucy’s mum, Linda, is the best. It’s just the two of them over here – Lucy’s dad, or her ‘sperm donor’ as Linda so fondly refers to him, left before Lucy was born.

  It’s always made me sad that he walked out on Linda; especially given that she was pregnant, but neither her nor Lucy seem particularly bothered by it, not these days anyway.

  Lucy’s uncle Phil lived here with them for years. He’s off seeing the world now, but Luce had a pretty solid male role model for most of her life anyway. As bossy and sassy as she is, it doesn’t appear she’s been emotionally scarred or got too many ‘daddy issues’ so to speak, so maybe it was all for the best.

  “What else are you girls up to today?” Linda asks as she pauses in the doorway to the living room where Luce and I are currently in the middle of a manicure session.

  She’s about to leave for her shift at the hospital. That’s where she met my mum… and as they say, the rest is history. They’ve been best friends ever since.

  “Oh, ya know, the usual,” Lucy drawls as she focuses hard on the bright pink lacquer she’s applying to my nails. “Probably get ourselves a bottle of vodka, smoke some weed… maybe get a few guys over.”

  I snort a laugh. That’s a classic Lucy response – and one that couldn’t be further from the truth. The wildest thing we’re likely to get up to is burning some popcorn.

  “Well make sure you smoke outside, alright? I don’t want you to burn the house down, and if you’re going to be running around half dressed, shut the curtains please; the old bird next door will have a heart attack if she sees.”

  Linda is such a good sport.

  “Will do, boss,” Lucy responds with a grin.

  “See you later, girls.”

  We both yell out bye, and then it’s just us.

  I’ve always loved hanging out here. Linda has given us the same amount of freedom since we were fifteen years old, whereas my mum was always lingering somewhere in the background trying to make sure that nothing was going wrong.

  I love my mum to death, but the woman has absolutely no chill.

  Linda and my mum are a bit like chalk and cheese.

  They’ve got vastly different parenting styles and ideas, but they seem to find common ground on all the important stuff, and I think in a lot of ways they help to balance each other out.

  Linda helps Mum relax, and in return, Mum helps Linda to keep things in check.

  As unfortunate as it is that I was in the hospital for so long as a baby, it led to a friendship that’s spanned over twenty years and is still going strong today, and I can’t help but think it’s a sacrifice I’d be willing to make all over again.

  ***

  Leanne

  1993 (Three months old)

  “Hey, Leanne, how’s my favourite patient today?”

  My favourite nurse, Linda, waddles in; her pregnant belly looking like it might just topple her over if given half a chance.

  I smile brightly at her. My days around here are long and for the most part boring, but Linda helps brighten them significantly.

  We’ve become close these last few months, and given that she lives only a few short blocks from me, I really hope that we’ll continue to be friends after this.

  I’ve found out pretty quickly who the real friends in my life are, and which ones are only there for the good times, when everything is going well.

  Shaun has had some fantastic support from the few who are in it for the long haul and I’m not sure how I’ll ever be able to repay them for their kindness.

  This extended hospital stay hasn’t been easy on any of us.

  A lot of babies get to go home between the first surgery, called the Norwood procedure, and the operation that Violet will have next – the Bi-directional Glenn, but not us… she simply hasn’t been well enough. At this point it feels like we’ll never make it back into the comforts of our home.

  My sister Rita is living at our place for now, helping Shaun with August and taking care of the house.

  She’s here visiting most days too – even sitting with Violet for me so I can spend some much-needed time with my oldest daughter.

  This has been tough on August – she’s cried when I’ve had to leave her, and she’s screamed when she’s been taken away from the hospital without me.

  Rita has become a surrogate mother to her at the moment, because at only two years old, she’s far too young to understand what on earth is going on.

  I really have no idea what we’d have done without my sister.

  Shaun probably would have been forced to give up work to take care of Auggie, and then we would have had problems with our mortgage and paying our other bills.

  There was no way Rita was going to allow that.

  She really is my hero.

  The nurse smiling back at me isn’t far behind her in hero status – she really has gone above and beyond.

  “She’s going good; actually, today seems to be a good day.”

  I know better than to announce that it is a good day. I’ve learnt these past few months that you don’t tempt fate like that.

  She looks into the small bed where Violet is sleeping and smiles down at her.

  “Can I get you anything before I start my shift?”

  She’s taken to visiting me not only during her work day, but also before she starts and after she finishes.

  “I’ll tell you exactly what you can do, you can take a seat.” I frown at her. “I think that baby might have grown even bigger overnight.”

  She’s always on her feet – I’m not sure I’ve ever seen her resting the way she should be. An ‘active relaxer’ is what she refers to herself as.

  She rubs her very pregnant looking belly affectionately. “I know… I’m still meant to have three more weeks, but there just isn’t any room left in there.”

  “I know that feeling… and you never know, that little girl might be getting ready to come meet you anytime now.”

  “I sure hope so.” She smiles over at Violet again. “That precious wee poppet could do with a best friend right about now.”

  “You think they’ll be friends?”

  “I know they will be… we’ll force them together so often they’ll have no choice.” She giggles.

  I guess that’s my question answered then – I’ve definitely gained a friend here, and if that’s not a silver lining to this whole ordeal, then I don’t know what is.

  Linda bustles off for her shift with a promise to return later, and then it’s just me and Violet.

  It’s early, so I know we won�
��t have any visitors for hours yet.

  Sometimes I take her for a walk — not outdoors or anything — a walk for Violet and I consists of nothing more than a stroll down the hallway – maybe down the lift if I’m feeling game.

  I can only have her away for about ten minutes before I have to bring her back and hook her up to all the machines that are improving her stats, so we can’t go far.

  We’ve had some tough times these past few months.

  We very nearly lost her.

  If it weren’t for the fact that Dr. Ellis happened to be doing the rounds that day, we would have.

  She opened my daughter’s chest – right there in the intensive care ward – and because of that, she saved her life.

  If she hadn’t been there… God, I shudder just thinking about the very real possibility of what would have happened.

  As thankful as I am that Violet was saved, the days that followed are not something I would wish upon anyone.

  No parent should have to witness their tiny baby with their chest open wide like that.

  It took three days before they closed her up again.

  Three days.

  Three long days of a thin cover draped over my baby’s front, with the words ‘chest cavity open’ noted on it.

  I can’t even begin to explain the surreal experience of watching a heart expanding and contracting inside a living, breathing human being, but it’s something I’ll never, ever forget.

  I may not be able to recall the name of the physiatrist who visits me every few days to check I haven’t lost my mind entirely, or even remember what I ate for dinner last night, but I know for a fact that I won’t ever be able to rid myself of the memory of my daughter’s heart visibly beating inside her body.

  Chapter Five

  Violet

  Present day

  I’ve painted for as long as I can remember.