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.

Tales of a cyster.

Throughout my lifetime I have lost many. I have seen my friends disappear because of the same disease that is trying to take me. I often think of them and sometimes I feel guilty that I am still here. They should still be here. They should be here with me, with their families, with their children. One particular friend of mine once reminded me of myself in a lot of ways but more accurately she reminded me of a person I hope to one day be. A person I would admire for years after, a person whose bright face would come to me in dark times and tell me to keep going. She too had a daughter, although much younger than mine. Her name was Lynn*. She was a fighter. She was one of those women you just look at think ‘how are you doing it? How are you that strong? Teach me’.  Lynn and I grew closer with each hospital admission we shared together. I learned quickly that we had a lot in common. She was younger than me and had a beautiful daughter Catherine*. Lynn didn’t have it easier. She was stronger than anyone I had ever met but everything was against her. The father of her daughter was not a nice man and made her life a difficult as it could be. This broke my heart. Her life was already unfair enough. She didn’t deserve any of this let alone added stresses like him. She was a trooper. I remember one hospital admission we shared together. Lynn was sick. Very sick. The doctors told her she was dying. She had very little time to live. Days, maybe weeks. This crushed me. I sat in my room feeling miserable that I might lose another but I felt angry at life because a woman like her doesn’t deserve any of this. Whilst in the pits of my wallowing, my thoughts would be interrupted by her beaming face at my door. First of all, how is she even walking this far? How is she still smiling? How does someone so deathly ill look so beautiful and illuminated? She was pale and thin but her smiling face made you forget that she was even sick. She had an air of warmth and strength and I was always in awe of her. ‘Would you like a cup of tea?’ She would ask catching her breath as she stood in my doorway, her frail body leaning heavily against the door-frame. Is she serious? She has been given the worst news anyone could ever want to receive and she is offering me a cup of tea? What? I can barely come to terms with her news and she is going on as if nothing is wrong? Is she in denial? I soon learned she was not in denial. She fully understood the gravity of the situation she was in but she knew that it was beyond her control and she kept her chin up. If I knew I had days would I offer to make my friend tea and laugh at an episode of friends? I don’t think so. How could I? How could she? What a woman. That night she sat me with for three hours. I learned so much about her life, her loves and her outlook. She told me tales of her little one. She spoke of precious time was and how badly she wanted to be here for her daughter and watch her grow up. We broke down after the lovey chit-chat. She sobbed heavily and for the first time her face wasn’t smiling or illuminated, it was broken. We had so much in common and the paralells of our situations frightened me. Her breaking down like this frightened me. She was never that kind of girl. She was strong. Stronger than me. She didn’t cry however now that she was I was petrified. Petrified for her and petrified for myself. She spoke of how, despite her frail state she went shopping for a gift for her daughter’s birthday. She didn’t go to buy her daughter’s ninth birthday present, she went shopping for her eighteenth birthday gift. A milestone birthday and one she would miss. How can life be this cruel to someone this kind? Each day, however she lost a bit of her battle. The disease began to win, slowly but surely. I could write endlessly about how devastating this was for me. How soul-destroying this was to watch but that is not what is important here. What I think and feel aren’t important. What did she think? How did she feel? Was she scared? If she was she sure didn’t show it. She continued to light up every room she entered despite growing weaker and giving into the heavy fatigue. Her family were heartbroken. Her mother was her biggest supporter. Her mother adored her. It was beautiful and heart-breaking to see.

Eventually Lynn lost her battle. Cystic Fibrosis got her. But it didn’t win because to this day she is remembered as the light that lit up the lives of many. She was a mother. She was a daughter. She was an inspiration. She was the epitome of strength and her smile shoots through my mind in my darkest and brightest times.

Rest in peace Lynn. Thank you for all that you gave to me. You made me want to be better. A better mother. A better friend. A better person.

-Ali.

“In the depth of winter, I finally learned that within me there lay an invincible summer.”

― Albert Camus

Twitter: @Christina1Kenny

Instagram: christina.kenny.

*All names have been changed for privacy reasons

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The future of us.

When most girls my age think of the not so distant future they think of the typical milestones. They think of graduating with the post-grad degree, getting engaged, getting married, progressing in their career, having children etc. I think of all of those things too. The only thing that makes my day-dream a little different is I have to remind myself not to include my own mother in them. I think of all of those upcoming precious moments I hope to have in my life and I can’t even include my best friend. I have shake myself a little and tell myself to ‘get over it’ or ‘suck it up’. I can’t imagine it the way most might. I can’t imagine my mum’s beaming face in the crowd as I hold my PhD in my hand. I can’t picture her embarrassing me in front of everyone, waving a camera in my face. I can’t envisage her yelling my name and my face turning eight shades of purple. The things most people want to forget I want to have and don’t want to do without. I know it isn’t healthy or realistic but sometimes I allow myself the fantasy day-dream. The one where I get engaged and the first person I call is my mother, you know? The one where I find out I am pregnant and my mother bombards me with advice and lectures me on pre-natal vitamins. The dream where I step out in my wedding dress and my mother tells me that no woman has ever looked so beautiful. The passing thought where she gives the most heart-warming and inspirational speech at my wedding and everyone cries and laughs. The dream where she holds her first grandchild and compares who he/she looks like. I will never have these things, these things that I desire most will never be mine and somehow I have to come to terms with this. When I say things like that I realise how selfish I am. ‘I have to come to terms with this’, I am not the one dying, I am not the one missing these things, she is. That brilliant woman who sacrificed everything for me and to have me will miss the best parts of me. How is that fair?

So, most of the time I think about something else, something less important, something less earth shattering and something less distant. Something that includes her. Something like today or hopefully tomorrow.

“To describe my mother would be to write about a hurricane in its perfect power. Or the climbing, falling colors of a rainbow.” —Maya Angelou

-Christina.

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*** You can follow us on Twitter @Christina1Kenny to follow our journey***

Her life after mine.

One of the main thoughts that has plagued me since the serious and swift deterioration of my health is what my daughter’s life might be like after I am gone. Right now she has the world at her feet. She is intelligent, funny, beautiful and the world is her oyster. But I have always supported her, pushed her in the right direction. Made sure she was on the right path and I am confident in her but what will she be like when she doesn’t have that support? I know what I want for her but I won’t be here to make sure it goes as planned? I won’t be here to make sure she gets her happy ending or her dream job or her bright future. Will she get everything she has dreamed of? Will she write that book she has always talked about? Will she get married on a little hill in bare feet like she has always talked about? Will she have lots of children in a big, country house where the sun always shines? What if she’s sad? Nobody can comfort her like her mum can. Will she tell her children about me? Will she forget me? Will her children think of me as their grandmother? Who will wipe her brow when she is in labour when her husband is saying all the wrong things? Who? Just who? I feel scared. I feel anxious. I won’t be around for my daughter. I won’t be able to fix anything or make it better. Am I being ridiculous? She is a grown woman. I have raised her well. She is wise beyond her years yet I still worry about who might drive her home if she has her wisdom teeth removed one day. I can’t help it. I am a mother. I will never stop worrying or caring, even if she was 50. Today though, today she is not 50. Today she is 21. A baby. Unsullied by how bad the world can be. It is my job to be there as she sees the darker side to life and just how dark it can be.

Sometimes I sound ridiculous, I know I do. Other days I think my points are totally valid and any mother in my position would be breaking her own heart, just like me. This is life though, isn’t it? This is what parenting is. Parenting is raising your child with the values you feel are important, necessary to being a well-rounded person who can stand on their own two feet. I think I have done that. I hope I have done that. But it isn’t enough. She needs me. Or maybe I just need her. Maybe this is really what it comes down to. Maybe part of me is in denial that she actually won’t need me. She will thrive, flourish even. Maybe that is what scares me. I don’t really know. Being a mother is complex. I can never take away my emotions in order to make any kind of logical assessment of what is going on inside my own head. I am plagued with heady emotions. I don’t know what I think. I know what I feel though and I feel sad. I feel like I am breaking my own heart. I feel like this illness is breaking my heart. Sometimes, I think the harsh reality of life is breaking my heart.

“So we beat on, boats against the current, borne back ceaselessly into the past.” | F. Scott Fitzgerald, The Great Gatsby.

-Ali.

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-Ali.

Palliative what?

Palliative care is what happens when someone is dying. They get treated by a Specialist Palliative care doctor who distributes pain medication and keeps pain under control. They also talk to you about making plans for after you have passed.

When my mum first told me she was starting to see a Palliative care specialist I felt my stomach in my mouth. I felt sick. Already? I thought. Although, little did I realise at the time it was probably more like ‘really, only now?’ I didn’t want it to happen. Why did she have to see this lady now? All she is going to do is make her think about death and dying and she will give up. She will stop trying. She will stop living and she will start dying. All of the talk about death and dying will make her weak. Weaker than she is now. She is a fighter, a warrior not someone who needs to talk about morphine control when her time finally comes!! The specialist Consultant’s office was in a hospice and this made me even crazier. A HOSPICE? REALLY? So on top of all of this depressing and miserable crap now she has to go to these appointments in a hospice? COME ON. I felt like that for a while, longer than I should have. As time went on I changed my view of Palliative care. I became more educated on their work and I saw how much they put my mum at ease. They were pros. They knew how to talk to her about stuff I could never talk to her about. They had skills her Cystic Fibrosis doctors didn’t. They were trained to prepare people for the end but they were trained in far more than just that.

They eased her pain. They made her feel more comfortable. They put her mind at ease and they allowed her to speak freely about dying, something that she couldn’t really do with me. My expectation of what a Palliative care consultant was like was a million miles from the reality. The effect this woman had on my mother wasn’t a negative one. She didn’t stop battling, she didn’t stop fighting and she was still a warrior, morphine or no morphine. They do everything they can to make sure my mum’s day-to-day life is as comfortable as it can be and I am so grateful for that. When your mum is suffering in serious pain, unable to hold a conversation or communicate properly you are eternally grateful to anyone who can ease that. Palliative care is invaluable. It I necessary and it is appreciated. The hospice and all of the doctors there have been so lovely to my mum and on top of that they are so upbeat and funny, which just makes me even more appreciative.

-Christina.

“Behind every beautiful thing, there’s some kind of pain.” ― Bob Dylan

*** You can follow our journey on Twitter @Christina1Kenny***

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What my dying mother has taught me about being in love.

It could have gone one or two ways right? I could have given into the ‘what’s the point of falling in love if it can all fall apart so easily?’ mind set. This didn’t sound like me and it most certainly did not sound like my mother. My mother has always been fiercely aware that she is living on borrowed time. She opted to live fast and furiously. Never giving into her disease or its many implications. Instead she loved deeply and fast. She threw caution to the wind and got lost in herself. She would surround herself with heady emotions, beautiful quotes and over-whelming experiences. I grew up in Taylor Swift song. What does this mean for me? It means I grab life as hard as I can and run with it. I love intensely, too intensely perhaps. Life is short. I want to experience every ounce of it without missing a bit. I am in love with a beautiful man right now. He is everything I want and need in a boyfriend. I don’t know how not to love him in any other way other than in a fast-paced, passionate trance. My mother inspired me not to be scared. Not to be frightened of the unknown. Life is full of dark patches and just waiting for them in the shadows isn’t living. She made me a fearless lover. Every so often I look at how deep I have fallen for him and for a split second I realise how vulnerable I am and how much of myself I have given to him. I think of how his name is etched in a little section of my heart and I feel nervous. Then I hear my mother’s voice, as loud as day. I hear her telling me not to fear life but to embrace it. I hear her spit the quotes of great men and women who threw caution to the wind and loved with all of their being. I see her eyes full of hope, passion and pure love for life and I feel empowered. Suddenly I remember who I was raised to be and who I am.

Life is short. Life is brilliant and heck, life is awful. Life is what you make it. There is no time for fear or regret. Instead love with all that you have. Don’t miss out on something great because you are frightened. Do it anyway. Take it from my dying mother and life like today is your last day. Love like today is your last day.

I know I will.

‘Baby we’re the new romantics. Heart-break is the national anthem and we sing it proudly.’

-Christina.

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Follow me on Twitter @Christina1Kenny.

Morphine and my mum.

When people hear my mum is now on morphine to control her pain they ask many questions. They seem shocked because Morphine isn’t really a word that rolls off the tongue. They want to know if she still acts the same on Morphine, they want to know what form it comes in, they want to know if she is alert after taking it, they want to know a lot. All of these questions are questions I had myself before my mum was put on the drug. The word sounds harsh and it isn’t a drug people consider normal. It is rare, it is crazy, it is intense. Things must be going really badly if you’re on Morphine, right? I guess so. At first my mum was taking liquid morphine orally as she needed it to help with shortness of breath and pain, this was great, at first. It was helpful for short burst of relief. It was scary originally because we had to double and triple check the measurements and dosages before we gave it to her. It was always a careful regime, never done lightly. The first few times I gave my mum her morphine dose I felt defeated. I felt like this was the beginning of the end and I am along for the ride. It was sad. It wasn’t like giving her her morning vitamins, it was so much more than that. The morphine was a symbol of her end. The Morphine stood for everything I had hoped wouldn’t happen. For me, it represented a day I prayed would never come. The end. After some time my mum was also put on a tablet form of the morphine to help with pain. Gradually the dose would be increased to continually keep the pain under control.

After a while I became somewhat desensitised to her taking this method of pain control. It became just a normal part of her daily routine. At first the Morphine made her sleepier than normal and nowadays the morphine (amongst the billion other tablets she is on) makes her head a little fuzzier than normal. Some times when she wakes up after sleeping she is a little confused and bewildered. It also means she is unsteady on her feet at times and can often feel dizzy so needs extra care moving around. She is still her and she is still alert. She just has moments of confusion, which is sad but to be expected. Sometimes I feel like I am losing her a little more every day. Every time a new medication gets added to her regime I feel like I lose another little part of her, a part I didn’t cherish enough when I had it but a part I will now miss. Along with losing little bits of her everyday, I lose little bits of myself. Everything I am has a little bit of her sewn into it.

-Christina.

“She was elusive. She was today. She was tomorrow. She was the faintest scent of a cactus flower, the flitting shadow of an elf owl. We did not know what to make of her. In our minds we tried to pin her to a cork board like a butterfly, but the pin merely went through and away she flew.” ― Jerry Spinelli, Stargirl

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***You can follow our journey with Cystic Fibrosis on twitter @Christina1Kenny***