This year I turned 30. I had a lovely day and a lovely party. I well and truly celebrated.
It was a significant day for me as surviving to 30 years of age wasn’t guaranteed. Not by a long shot. From a health perspective I’m a very high maintenance girl! Keeping me in tip-top shape is a massive team effort. Some of my team members have been there from the beginning and will be there to the end. Some have come and gone but their presence and support was integral at the time.
My parents are the reason I’m alive. They made me and they put in the hard yards to keep me alive from the moment I was born. My first year of life was an acute challenge and the rest of my childhood was a chronic challenge. They rose to those challenges with aplomb and ensured that when they handed the responsibility of my healthcare over to me that I was in the best shape possible. They are still helping me overcome challenges.
My sister has put up with CF her whole life too. Being the sibling of someone with CF is a unique role with unique challenges.
Dave helps out every single day and in every single way.
Dave’s parents did for Dave what my parents did for me. That’s what parents do.
My dogs are my kids and they love me as much as I love them.
I have been blessed with my friends – past, present and future – particularly the really special ones who span all of those categories. My friends have stood by me in all sorts of ways. Some really special moments stand out in my memory.
- My BFF comes with me to scary appointments or investigations when Dave can’t. She comes to visit me in hospital straight off international flights. She buys me pyjamas for hospital which remind me to smile when there don’t seem to be too many reasons to smile.
- When I was 17 I went straight from a stint in hospital to a camp. I didn’t really cope. I couldn’t reconcile the jarring difference between my CF world and my non-CF world. There was zero overlap. One special friend could tell I was lost trying to get my head back into the real world and she helped me acclimatise. After the funeral of a fellow PWCF I took to my bed to escape the grief in sleep. She was there when I woke up.
- In my last year of school I was able to pick one friend to skip PE with me. We were allowed to go wherever we wanted in the school and do exercise of my choosing. We really did exercise… but we also had fun and talked and laughed and got to know each other super well.
- In my first admission to the adult hospital at RPA my boyfriend at the time visited me. Every. Single. Day. I really needed that support and he gave it willingly. It wasn’t until I had Dave to visit in hospital that I realised how impossible it is to visit every single day and how amazing he was for doing just that.
- All of my initiated friends willingly walk slower for me when I need them to. They talk when I don’t have the breath to. They ignore me when I cough.
- Then there are my friends who also live with CF. They know CF from the inside. Most often we communicate via text, email, phone or Facebook. We are physically kept apart by geographical distance, energy levels, cross infection logistics or major health crises. Social media is a handy and increasingly important way of navigating these obstacles. Sometimes the support is tangible. I’ve posted meds to Melbourne for a friend who was caught short, inherited meds from a friend who had a transplant and no longer needed them, been a sounding board about what is normal and what’s not, visited people in hospital and passed on golden wisdom that you CAN order Thai food to be delivered directly to your hospital bed.
These people are literally the reason why I am alive today. They are the A Team.