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,
Dear wise woman,
It has been a year since our last encounter. A year since you touched my heart and reminded me of who I am. I did not realise it at the time but you were right. On that cold, bitter October day you knew me better than I knew myself. I was looking at my life through very tinted glasses. You were looking at my life with a wealth of experience and wisdom. I didn’t even notice the warmth, compassion and empathy you had for me. I failed to see that you were a woman who had been there, done it. You had lived that moment I was in. You had been there once before and you could see it all with 20/20 vision. You told me I could do it. You told me I could pursue a PhD. You told me I could finish my last year at University, no matter how sick my mother was. You told me I would make it work. You told me I wasn’t thinking clearly. You told me I needed a break, not a permanent one. I was convinced you were wrong. I thought you couldn’t possibly understand what I was going through, what I was feeling. You didn’t know me.
How wrong was I? You spoke like a true mother that day. I look back on that dark day and I don’t recognise myself. I was scared. I was lost. You tried to guide me. You did your best. I see that now. Thank you. Thank you for everything. It is because of you I am back in College. I hope to one day have a more prestigious title than ‘Miss’ and that is down to you. Women like you are rare. Women like you are the women made to be mothers and teachers. One day, I want to be a woman like you.
Your kindess may have gone unnoticed in that stressful moment but it is recognised now. It fills me with warmth and empowerment. I am grateful. Thank you for everything. I hope one day I can be the wise woman advising someone as lost and hopeless as I was that day.
I will never forget that moment.
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.
My PhD has officially started. I am nervous. I am excited. I am totally petrified. Over the next three years I will research the Cystic Fibrosis lung microbiome. Three years from now (fingers crossed) I will leave Queens University Belfast much more informed about the subject that has captivated me since the beginning of my Science degree. I will study, in detail, the disease that plaguges my brave mother everyday. The disease that she fights, battles and sometimes even conquers.
I never really thought about the fact that I might have a unique insight into the research. A rare perspective as I get to see the condition and its many implications everyday.
I am eager to get started and throw myself into it. My entire academic life has lead up to this point. The time is now. This is not a dress rehearsal.
‘Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning’. –Albert Einstein
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.