She’s explained, in great depth, that this is a temporary solution – all this device will do is buy me some time.
A month if I’m lucky – but probably even less.
I don’t know if that’s going to be enough time – no one does, but I do know that I don’t want to go through yet another open-heart surgery to have a long-term VAD put in, just to find that I could have got a new heart next week.
My mum and dad are not in agreement with my logic on the subject.
They want the long-term solution.
“It could buy you years, Violet,” Mum pleads with me. “You might not have to worry about a transplant for a long time – it just seems less risky.”
I understand what she’s saying, I really do, but I have a shot at a real second chance here.
I’m a perfect candidate for a transplant, I’m still young, I’m sort of fit, I don’t smoke, I’ve already been doing the cardiac rehabilitation program, I’ve got the support… and more than that, I’ve just got a feeling that this might finally be my time.
“Often a period of time spent on a short-term VAD can actually improve a patient’s suitability for transplant, Mrs. Miller. I know it’s a scary thing to consider, and the allocated period of time it offers may be hard to come to grips with, given that it’s so short, but I really do believe that this is the best course of action for Violet right now. We can do what we need to through the cardiac catheter, and a few small incisions in her abdomen, rather than having to put her through another high risk, lengthy surgical procedure. The less stress on her heart and body, the better at this point.”
I want to high-five Dr. White – she’s saying all the things my parents need to hear.
“What happens if her time on that machine runs out?” Mum asks. Her voice is shaking. I hate hearing her like this. It cuts me deep to see the pain and suffering my condition causes her.
“If the short-term VAD is no longer able to sustain Violet’s heart function, and a donor heart hasn’t become available, then we’ll have no choice but to continue with the long-term VAD.”
That sounds like a terrible outcome to me. It’s obviously better than dying, but it’s still far from ideal.
The backup option seems to bring some peace to my parents however, so if that’s what they wanted to hear, then I’m glad they did.
I know damn well there’s a lot more that Dr. White isn’t saying – my heart could fail again while I wait for a transplant, I might deteriorate to the point where I’m not strong enough for surgery… circumstances could change, and I suddenly might not be suitable for the long-term VAD anymore.
They’re all very real possibilities, but I ignore them – every single one.
“It’s your choice, buttercup.” Dad reaches for my hand.
I know it’s my choice – I’m an adult now and my mind has been made up for the better part of the last half hour. This question and answers session has been for their benefit, not mine.
“I’d like to go ahead with the short-term VAD,” I tell Dr. White.
She nods at me with a small smile – I know she thinks I’ve made the right decision.
“You understand that having this procedure means that you’ll be restricted to a bed, and you won’t be able to be discharged until either you receive a transplant, or you are fitted with the long-term VAD?”
I understand all of it.
I think that’s why Mum and Dad were so set on the second option – that procedure would have meant I got to go home.
“I understand.”
“Great.” She closes the file she’s holding in her hands. “I’ll let Dr. Ellis know you’ve made a decision and she’ll go ahead and make the arrangements.”
I can almost literally feel the tension radiating from my mother as I watch Dr. White leave the room.
Dad mumbles something about coffee and before I even look up, he’s gone… leaving me all alone with a sceptical set of eyes.
“Are you sure, Violet?”
“I’m sure.”
“But why don’t you take the long-term opt—”
“Mum, I’ve made my choice,” I interrupt her.
I’m too tired for this argument. I know it’s hard for her – having to come to terms with the fact that I make my own decisions now, but that’s the reality. I’m twenty-one years old and my health is no longer her burden to carry, it’s mine.
“I just don’t understand.”
Of course she doesn’t. She couldn’t possibly.
I know she’s watched me endure this condition every step of the way – but she hasn’t had to live it first-hand.
It’s my life, not hers.
She’s always done everything she can to keep me alive and to make the best of my situation, and I’m grateful for that, I really am, but this is about more than just surviving now. This is about living – it’s about having a real life.
I don’t want to carry around a battery pack strapped to my body for the next however many years.
I don’t want to have to endure an open-heart surgery now and then again one day when the VAD stops helping.
I just don’t want to do it.
I don’t pull this card often, but I feel like it’s justified now.
“I think I’ve been through enough,” I croak – even my voice seems to have given up on me now. “Don’t you?”
I want to take the easier option for once. I want to be hopeful.
A huge part of me feels like being fitted with a long-term solution means I’m closing myself off for the real long-term solution here – a heart.
I need to give my body and the universe a shot to make things right for me.
I have to take a chance on someone else’s heart.
Her stare softens and I see her resolve wavering.
“This is what my heart needs… I can feel it.”
She sighs.
“You’ve been on my side my whole life, Mum; I just need you to stick by me for this too, okay?”
She nods her head and I watch as tears well in her eyes.
“Okay.”
“You promise?”
She leans over and kisses the top of my head.
“I’ve gotten you out of here your whole life, I’m not about to stop now.”
***
Leanne
1993 (Six months old)
We’re finally going home.
It’s been so long, I was beginning to wonder if this moment was ever actually going to arrive.
Most people spend one or two nights, possibly a couple more if they need the extra support after they give birth, but we’ve been here a little over six months in total now and this is the very first time Violet will leave these hospital walls.
She’s never even been inside the beautiful nursery I decorated for her – the space containing everything I selected carefully by hand.
Something like co-ordinating colour schemes seems so unbelievably trivial now. It’s almost laughable that I visited four different baby stores just to find a blanket in the perfect shade of mint.
If only I knew nine months ago what I know now.
I wouldn’t have spent my time making sure that I had the all-natural, expensive-as-hell baby lotion; I wouldn’t have insisted that Shaun re-paint the ceiling in the nursery and I definitely wouldn’t have bothered stressing about the fact that all of the baby clothes we owned weren’t pre-washed, dried and folded neatly in the drawers.
If I knew then what I know now, I would have spent the time I wasted doing all of that, playing with August, or going for walks outdoors… I would have enjoyed all the simple things we all take for granted until something like this happens.
It’s not so easy to take a stroll down the road anymore or shoot into town. Heck, all that was made significantly more complicated by just having a baby, let alone by having another baby – especially one that comes with heart complications and a feeding tube, but this is my new normal.
This is our new normal.
&
nbsp; It’s been about three months since Violet’s last open-heart surgery – the bi-directional Glenn, and she’s only just well enough to leave. That procedure has prepared her body for the final stage operation she’ll have when she’s three years old.
We’re out of here for now – and I know all too well that our time to return will come all too soon. But for today, we’re finally free.
The worry of the next surgery is for another day.
We walk down the long hallway, Shaun carrying Violet, all tucked up safe and asleep in her car seat.
Thinking back on the past ninety days is like trying to read writing on the side of a speeding train.
It’s a blur.
I see some parts so clearly, yet can’t recall others at all.
I notice things I didn’t see at the time – no one ever told me, but I can see now that Violet was really unwell for a while there… that maybe she wasn’t doing too well at all.
I wonder if maybe there were times where perhaps death was knocking, but we just weren’t coming to the door to let it in.
Maybe it is like they say – maybe ignorance is bliss after all.
Regardless of what happened then, I do my best to focus instead on what’s happening now. I feel like singing, dancing and making a real scene as we make our way out of here. I’m tempted to yell ‘you were wrong’ at the top of my lungs.
Don’t get me wrong, we’ve received some fantastic support these past months, but I’ll never forget those doctors that told us we were wasting our time – that our little girl wouldn’t make it.
It may not have been an easy journey getting to this point, but we are here, and that’s what’s most important. I know we’re not through it all yet, but I also know we undoubtedly made the right decision in trying.
Violet has been given six months we were told she wouldn’t get, and even though I’m dying to get out of here and move onto the next stage of our lives, I couldn’t be more grateful that those months have existed.
Life lately hasn’t consisted of much more than the four walls of the small room we’ve been confined to, but I still wouldn’t give it up for anything.
We walk out of the front doors, and into the fresh morning light.
Shaun straps Violet’s car seat into the back of the car and I slide in next to her.
“We made it, baby,” I whisper to her as Shaun starts the engine. “I promised you I’d get you out of here.”
***
“Shaun!” I hiss into the darkness of our bedroom.
“Mmmmmm,” he groans in his half-asleep state.
“She’s done it again.”
“You’re kidding,” he moans.
I wish I was.
This is the third time this week alone.
Violet is starting to make a habit of pulling out her feeding tube, and each time she does it we have to make a trip into the hospital to have it put back in.
She only seems to do it in the dead of night – times when I can’t call Linda and have her put it back in, of course.
I know it’s necessary to have the damn thing, but I’d be lying if I didn’t say I was sick to death of it.
There’s only so many times you can drive a baby into the hospital in a half-asleep state before something cracks.
I’m at the point now where I’m going to insist that I be taught how to do it myself – if the on-duty doctor won’t do it then I’ll have Linda show me how… it can’t be that bloody hard.
“I’ll take her in, you stay here with Auggie.”
“If you’re sure?” He yawns.
“Go back to sleep,” I whisper as I pull the door shut.
I know he won’t need to be told twice.
We’re both as exhausted as each other right now.
Ever since we brought Violet home, August seems to have forgotten what sleeping right through the night is all about.
She’s up every few hours, crying or wandering around the halls.
The only thing tougher than getting up to a baby half the night is getting up to a nearly three-year-old for the other half of it.
I’ve had only one full night’s sleep since we got home. I set Violet’s tube to automatically feed her every three hours and Rita took August for the night to try and give us a break.
While the hours of uninterrupted sleep were total bliss, the overwhelming feeling of panic and terror when I woke to silence is something I could do without – I haven’t been brave enough to try it again.
It’s a scary thing being a parent.
It’s a truly terrifying job to be a parent of a child with needs that differ from others – needs that make everything so much more high-risk than it should be.
Every day feels a little bit like a gamble. Like I’m betting all the money I have on the favourite in the field, but instead of crossing my fingers for a big win, I’m just hoping like hell that I’ll get my money back – that I’ll get the chance to make another bet tomorrow.
It’s a challenging lifestyle to adjust to and one I’m not sure I’ll ever consider normal – but I have to try.
This is my life now – our lives, and that’s all there is to it.
We just have to get on with it – take it day by day and hope that our bets keep paying off.
Chapter Twenty-Four
Violet
Present day
“Alright, what’ll it be first… ‘Mean Girls’, ‘Legally Blonde’ or ‘Bring It On’?”
I shake my head in amusement at the offered selection. “Really?” I raise my brows at Lucy. “Those are the choices I get?”
She gasps in mock outrage. “These are classics.”
I stifle a giggle. Lucy is such a sucker for these kinds of movies.
“Fine, ‘Mean Girls’… unless you’re going to quote the whole thing word for word, in which case, the other one with the cheerleaders.”
She claps her hands together excitedly and rushes over to the TV. She’s just as happy about this as I am.
Movie nights are our thing, and while it might be an awfully tame pastime for a couple of girls in their twenties, there’s no other way I’d rather spend my time – we’ve been doing this for as long as I can remember.
I’ve missed hanging out with Lucy lately and while it’s not the same in here, I just don’t know if I’m going to get another chance to do this with her outside of this room – there’s no guarantee I’m going to get to go home.
So I begged my nurses to let this slide. Hospital policy says that no visitors are allowed in the ward after eight at night, but thankfully, they agreed to turn a blind eye to our girly movie marathon.
I guess a crappy heart does have some perks after all.
I think they all feel sorry for me, and while I normally hate sympathy, in this case, I’ll take it. One of the nurses even brought us in some popcorn earlier so I don’t think anyone’s got too much of a problem bending the rules just this once.
I’m just glad that they agreed without Lucy having to get involved. She might look sweet, pretty and innocent, but I know full well she’s not someone you’d want to mess with. Her mum jokes that she’s always been part wild cat – when the need arises, she’s not afraid to roar.
She’s always been like that… Lucy has had my back for forever.
***
Lucy
2006 (Thirteen years old)
“Seriously, Mum, she’s just a bitch.”
“Language!” Mum scowls at me.
I roll my eyes. Sometimes my mum really needs to chill – it’s not like I said the ‘f’ word or anything.
“But she is.”
“That might be the case, but there are things that we think, and things that we say out loud, and you, my dear girl, really need to learn the difference between the two.”
Mum’s always said I have no filter.
She’s correct too. I can’t understand why you’d think something but not be willing to say it out loud. I’ve always believed that if you shouldn’t say it
out loud, then you probably shouldn’t think it either.
“And besides,” Mum carries on, “what Julia is or isn’t doesn’t change the fact that you are the one being called into the principal’s office.”
“I only had to go there because I told her she was being a bi—”
“Lucy Reynolds, don’t you dare,” she cuts me off. “I don’t know what has gotten into you.”
I know exactly what’s gotten into me. Julia and her little gang of airheads is what has got me all riled up.
I don’t know who they think they are, and I don’t care how many trips I have to take to the principal’s office, there’s no way I’m going to take this crap lying down.
“Mr. Filby was very concerned about your behaviour, you know.”
“Mr. Filby.” I sneer the name, even though it’s not him I’m really angry with. “He doesn’t even know what happened.”
“Well then you tell me what happened, because this isn’t like you.”
She’s disappointed in me; I can see it in her eyes and I’d be lying if I said it didn’t hurt, but I know she’s going to be just as angry as I am when she finds out what those girls said.
“They called her Frankenstein,” I growl.
I hear her gasp. “What?”
“Julia and her friends, I heard them calling Violet ‘Frankenstein’… they were making fun of her scars.”
“They said that?” she whispers. Her face has paled in shock.
I nod, and I see her expression shift from stunned to furious in the blink of an eye.
“Oh. No. Way. This is not happening. Na uh, no damn way… not on my watch.”
She’s got the phone in her hand already and I haven’t got a clue who she’s planning on calling, but I don’t care.
Mum is on the warpath now.
If I look close enough I can probably see the smoke coming out her ears and the steam pouring from her nose.
She’s royally pissed off.
Every Last Beat Page 12