The day I became terminally I'll is still a day I remember. I have an odd memory and seem to remember many things. But this is vivid. Sitting with my parents in our living room and having then tell me things were going to change. I had things I had to do daily now. If only I knew the storm that was coming. I remember not being phased but in hindsight that's probably best. It took one doctor 2 sweat tests and 2 defective genes to make me terminally Ill and flip my family's world upside down. Just lil ol me is responsible for so much damage and I didn't even do anything, I was born with it. Damage can't be undone just like words can't be unspoken. You learn to cope and make adjustments but since that day life hasn't been the same and neither have any of us. We accept our new reality with bitterness and resentment. (maybe not everyone just me) after bitterness and resentment came denial and anger followed by acceptance and understanding. I was 10. These emotions and feelings are way beyond what I was capable of but I managed to get by.
You learn to accept that this is your life now. You are different but not in the way the other kids see you but in the eyes of the doctors who look at you and see so many who came before you and had no chance, but you could be different right?
Learning to do things you don't want to so you can live is a reality check and even at 27 I still am learning how to master that skill. Poorly at times but I'm a work in progress.
I remember the days before treatments and pills hospitals and ivs. I wish I appreciated it more now that I'm looking back. I had 10 years to be normal just like everyone else but I guess I was just born to be different. We're all born but it's up to us to find our purpose and I haven't found mine yet but I'm still looking. I just hope I fafill whatever it is. To be a disappointment would be a disappointment to myself.
Growing older with cf means your cf grows too. Pills and treatments ivs and shots surgeries and tests. They follow you like a trail of misfortune. One after the other each one becoming part of a life you believe to be normal. After awhile you forget what normal is and even what normal looks like. So many times iv stared at myself in the mirror looking over my face and body and I don't see the same person I saw when I was 18 or even 21. I see this person who looks like me but has been through so much pain and hurt. I see the darkness around my eyes like a reminder of the nights I couldn't sleep and I see the so much of the person I should of been, the person I could have been if I wasn't ill. I don't know how to be anything but sick, that's what my life has been made up of for so long that I don't know how to function on a day to day basis. Perhaps I thrive on iv schedules and antibiotics. As the poison flow through my veins I find my purpose and my life line into who iam. Who will I be when my cure comes? Maybe I'll be able be the florist I always wanted to be or perhaps I'll just live life like I have never lived before and when I look in the mirror I hope I still see the struggle I went through but it's just a reminder of how far I have come and where I'm going.
