I remember, so don’t act like I have forgotten.

Dear Mum,

I read somewhere recently that every time you remember an event, you aren’t recalling the actual event. Instead, you are recalling the last time you remembered it. That killed me. Does that mean every time I think of you, I am just thinking of the last time I recalled a memory of you? There is something so removed, so aloof, so unnatural about that. I want to believe that each time I think of you, I think of you exactly as you are, as you were, just you.

People tiptoe around you now. Not everyone, just most people. They act like we should pretend we have forgotten because it is easier than recalling you and your death. I hate it. I want to remember you, daily. You were and still are the biggest influence in my life and that hasn’t changed just because you aren’t here. I want people to ask about you. I want them to the fun, beautiful, bright memories of you that we all share. I want them to acknowledge you. There is no elephant in the room. You are gone. Your influence, however, will never be gone, not for me.

You might just be my favourite and most inspiring subject.

I guess I have been dealing with the fact that you haven’t met him and that you never will. That is a real shame. He has that annoyingly brutal honest bluntness that you had. He also has that absurdly self-deprecating humour that you adored. He’s not what I expected but he is exactly what I think everyone wants in another human. He has your tenderness. You would like him. I think, in time, you would love him. I don’t even know why I am bothering to detail all of this to you. You see it all now. You’ve seen him, seen us.

To quote you ‘I miss ya kid’.

Love and love again,

 

Teeny.

Dear Dad..

When I was nine years old you told me I could be an astronaut, in fact you told me I could be whatever I wanted. I now realise that was ridiculous since I was almost legally blind and got car sick.

That is when you planted the seeds. You were raising me not to settle. You encouraged all of my whimsy and ridiculously free-natured mannerisms. I didn’t realise it then but now, I understand. You told me never to accept what I find to be mediocre. Not in love, not with my passions, not with my friendships and especially not with my dreams. You made me laugh when I was sad or angry. You gave me my sense of humour. Now, after a day of lab work that has gone wrong I make a joke and we both laugh. I got this quality from you. When I am broken you help me find the missing pieces and you constantly tell me I could find them without you but I know that isn’t true. You push me when I am on the verge of quitting and you tell me to run when it isn’t worth fighting for. You never doubt me, even when the world is telling me I’m taking the wrong path, you trust me, blindly and totally. This is where I get my blind faith from.

Most importantly, you taught me what true love and mutual respect looks like. When I was growing up I always knew I wanted someone to love me the way you loved mum. It is because of you that I know what I deserve. It is because of you that I didn’t settle in love. I wanted the blissful existence you both had even when times were hard. I wanted someone who looked at me the way you looked at mum even until her final day. Others would say that love like this is fictional and unrealistic but having seen it first-hand I know I too can have that. You made me want someone that really would love me in sickness and in health. You know what? You knew that mum might not live until old age and you didn’t care. You watched her brother lose his battle with CF and you threw caution to the wind and followed your heart. I wanted that. You taught me that love doesn’t involve logic or science. Love doesn’t follow any rules or any perfect path. When everything in our lives was dictated by timelines, rules and regimes you showed me that this one thing wasn’t. None of it mattered. All that mattered was this indescribable thing you felt for her. For all of this, I am eternally grateful. You taught me endless lessons. You are the unsung hero of our story, did you know that? I really mean that. You held us all together when we were almost falling apart. When a mean boy hurt my feelings you drove to my university campus to take me home and when mum lost her damn good battle with CF you promised me everything would be okay eventually.

 

Thank you.

Thank you for being my best friend, my role-model and my inspiration.

I love you.

 

-Your favourite child by default,

Christina.

Professionalism is hard sometimes.

‘Pathology’.

Most of the time I feel empowered by my life experience as a researcher. I feel like it gives me an insight that others will never comprehend.

‘Infection’.

It enlightens me in ways others will never be privy to. It makes me more well-rounded.

‘Exacerbation’.

I can help educate others into the ins and outs of living with Cystic Fibrosis. What it looks like. What it feels like.

‘Compliance’.

However, on that random day my emotions take over. I can’t remember what professionalism looks like. I just sit there and nod. Inside, I’m dying. Normally, I can separate my own experiences from formal meetings, not today. Today I swallow hard and fight back the tears. I want to scream. I’m not sure why today is different from other days, I just know it is. I want them all to stop. Stop talking. Just stop. Every word wounds me. Every single word leaves a gaping, oozing wound. Nobody has noticed. They don’t notice I’m bleeding. They are oblivious to my pain as I sit there and nod in agreement. I sit there, silently bleeding. It’s only 9am and I am already empty. I have nothing left to give. Nothing can comfort me. It’s 9am and I am wishing it was 6pm. I’m wishing I could go home and cry. Go home and mourn. Go home and tell my dad I just can’t do it. Go home and grieve.

Then, suddenly I recall why I’m here at all. I recall her strength, her courage, her unwavering optimism and I suck it up.

Lab is calling, research waits for no-one.

-Christina.

Ten things you need to know about CF hospital stays. 

1. Nobody brings you flowers.

Did you know that flowers harbour a dangerous bacteria so most CF wards won’t allow fresh flowers because of this. 

2. Sometimes you schedule your stays. 

You can usually tell when you will need to be admitted next (roughly) and so you plan around that. Planning to get IV antibiotics in mid-December so you can be out by Christmas isn’t uncommon. However, sometimes that two week stay you had planned somehow turned into four weeks, ten bad straight to DVD movies and two mental breakdowns. Standard stay. 

3. You often prefer cake to grapes. 

However said you should bring a hospitalised patient grapes has obviously never met a CF orient who is actively trying to pile on the pounds. 

4. Visiting hours don’t apply. 

When you have had most of your major life experiences in a hospital room the rules about visiting hours generally don’t apply. Family members always crash on a mattress by the bed especially when things are rough. 

5. You interpret your blood results faster than the doctor on-call. 

Me: ‘What is my CRP? 900? That is pretty good for me. Don’t worry.’ 

Worried looking doctor: ‘That seems very high.’

Me: ‘Nah, I had the flu and my CRP was 1500 now that was high. This, not so much. Hey while you are there, what’s my white cell count?’

6. You know the nursing staff too well

You know the incredible nurses so well that you are bringing them back gifts from holiday and advising them on home decor. 

7. You know that Thursday is Canteen chicken pie day. 

8. You also know that chicken pie is the only edible canteen meal. 

9. You know all the other CF patients really well but only from afar or online because you can’t actually meet them in person or hang out because of cross-contamination. 

10. You aim to use your hospital time wisely. 

You think: ‘maybe I will read all of Jane Austen’s stuff now that I have the time’. By day two IVs are kicking your butt and you can’t stop feeling nauseous for long enough to do anything. 
-Ali. 

  

When your life has the same intensity level as a Grey’s Anatomy episode.

What’s the most dramatic thing that could happen to someone? Disaster? Near-fatal injury? Disease? Death?

That’s kind of the premise for many highly-charged, itense, television dramas, isn’t it? I mean there are other things in there, great love, dramatic romance, loss, huge, life-style changes but the general theme is the same: change and drama. Sometimes I think my life is a bit like that. What would my life be like if I didn’t have the turbulence of my other’s disease? What would my life be like if I didn’t have to recieve updates on her constantly changing condition and the next course of action? What would it be like if we didn’t have to leave our holiday days earlier to get her to a hospital? What would it be like if some of my days weren’t tainted with distraction and making sure the rest of my family is okay? Mentally and physically? What would it be like to just wake up, eat my breakfast and think about what nail colour I might wear today? Would I be bored? Would I just think that was normal? Would I think that an episode of Grey’s Anatomy is over-dramatic and unrealistic? Would I realise how important love is? Would I realise that life is this rare, precious thing that could be unexpectedly snatched from you at any second? Would I worry less? Would I worry more?

What if?

Right now my life is highly charged, it is hectic, it is dramatic but I am happy. I am grateful for all that I have. I am grateful for my life. I am grateful for all of it. Is that normal? I get on with it. I still laugh at jokes and watch far too much television. What is normal anyway?

-Christina.

You know how when you were a little kid and you believed in fairy tales, that fantasy of what your life would be, white dress, prince charming who would carry you away to a castle on a hill. You would lie in bed at

So I am a carrier, now what?

Finding out you are a carrier of a disease evokes lots of emotions. For me though, I have always known I carry the Cystic Fibrosis (CF) gene.

So what does this mean? It means that if I have children with another carrier, we could have a child afflicted with CF. What exactly does this mean for me? Should I ask my boyfriend to get tested now? Or should I wait until we one day decide to have children? What if he is also a carrier? Then what? Do we decide to avoid natural children altogether and think about adoption? Do we go down a more scientific route? What do we do? What is in the best interest of our future child? What is morally right? If we avoid natural children because we are both carriers is that morally corrupt? Or am I being silly and thinking about it all too hard? How do I feel about it all? I have no idea. I have no idea where to start or when to start. What if I one day have an unplanned pregnancy? What if that leads to a CF child? Does everyone have to think this hard about having children? Probably not.

Right now I have no idea if my boyfriend is a carrier or not and I think that is okay. I am only 22. I am not planning on getting married anytime soon or even having children so maybe I will let it play out organically. In short, I have no idea what I will do about this. I could give you a perfectly thought out plan about what I will do surrounding having children but that would be a lie because now I am clueless. I do know though, that if I was blessed with a child one day (CF or not) the child’s health status would not affect the love I would have for him/her.

For now, I think I’ll worry about what to have for dinner tonight. I think, being 22 warrants worries like that.

-Christina.

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My one and only.

A note from Spring of 1999.

That smile, in the morning makes me come alive.

She is so beautiful.

The tiny hands, feet, the laugh, the chat, the calling of my name makes me feel so special.

I love her more than my own life.

I watch from the window as she plays in the wind.

There is so much happiness in her smile.

I fight, every day because tomorrow will be special.

She will be there and my life will go on.

-Ali.

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