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,
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?
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?
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.
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.
To read the beginning of this post head on over to http://cysticfibrosisnewstoday.com/ and check it out!
……..I want her to life until she cries, see the beautiful sights of the world and wake up each day happy and excited for the day ahead. I don’t particularly care if she gets a huge tattoo of something I hate or if she decided to become a professional juggler as long as she is happy. Nothing else matters. Nothing is as valuable (or invaluable) as health and happiness.
I have less opinions on little things that don’t matter. I just want to be part of the beautiful journey that is her life, however I can. I am just grateful I am still here to share precious moments together. To laugh, to cry, to live.
Cystic Fibrosis has good days and bad days. Today, my mum had a good day and we made the most of it. Disease can be rough. It can be tough on the entire family. Approaching everyday with love and compassion is how we make it work. However, even the good days are incredibly difficult and short lived.
Sometimes, it is all of the little moments that turn out to be big memories later in life.
The place is crowded, loud and obscenely bright. I swear it is one level off interrogation bright. How are all of these people so alert? Trolleys and annoying, repetitive beeping sounds surround us. The atmosphere is strained and everyone seems rushed and in a hurry. The only thing separating us from the harsh, pained coughing beside us is a flimsy curtain. My eyes are sore with fatigue and my temperature is off, my body refusing to be awake at 3am. My mother rocks back and forth on the hospital bed, somewhat incoherent on and off with the pain. Pancreatitis strikes again. This time the pain was unbearable, she needed IV fluids and serious pain relief, not to mention anti-sickness medication. The entire situation was bleak. It was the dead of winter. The roads were icy and dangerous. We drove here, in somewhat of a panic that forced me to switch my brain on. Most people are in warm, cosy beds dreaming right now, listening to the harsh winds outside their windows. I’m in tracksuit bottoms, a pj top and duffel coat. Please kill me. My dad is keeping his cool, as usual. He doesn’t even look tired. Sometimes I wonder where is natural ability to be ready for situations like this comes from. I hate how perky he is. I’m irritable and exhausted. Despite my bad mood, I know how easily stressful situations can escalate. In an attempt to lighten the mood, seeing how my mother is gradually more alert and chirpier I decide to take some photos to remember the night. Fourteen selfies, several photos (some with medical staff) and six, unrepeatable swear words later (all from my mother) the three of us are in stitches of laughter.
I don’t even remember what happened after that really, I just know it was funny and we laughed a lot.
Laughter is the best medicine.
‘If Heaven exists, to know that there’s laughter, that would be a great thing.’ -Robin Williams