A work in progress

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. 

Beautiful souls gone to soon

There are people put on this planet that are truly beautiful souls. Their smile is infectious and their love for life is contagious. They are the kind of people you find yourself drawn to. Knowing them and loving them make you a better person. 

Having people like this in your circle  of friends is life altering. The love that they project is empowering and even if your relationship is only one that's online. 

Having cf and having friends online is really as good as it gets. But you develop such a deep and strong bond. But nothing compares you for the loss of these remarkable souls. 

But when it rains it pours. Because not one beautiful soul has returned home but 2 great woman. Both married woman who left behind devoted husbands who are devastated to have lost the love of there lives to such an ugly disease. 

Mothers lost there precious daughters who they spent so much time loving and protecting. 

Dads lost there precious baby girls. 

But what kills me is brothers lost there baby sisters. Having an older brother myself it hits my heart hard. My brother was/is my first best friend,my first protector. When something happens I want him to know. I want to tell him about my 

crazy days and tell him my bad jokes. I think when you loose your sibling especially when your close you will never be the same and I don't want that for anyone but especially my brother. 

When so many people pass because of cf you never get use to it. You never become numb to the feeling of death. In fact I think you become more acceptable to the pain and hurt.

Sometimes I just don't want to know anyone else. I don't want new friends and I don't wanna get attached to others because when they leave it hurts and I sometimes wonder if someone can reach a point where they can't handle anymore hurt. 

So to sweet Christina. No one lived life the way you did. You lived it to the fullest. It is obvious you are loved and will be missed but mostly I think you changed so many lives. You loved life and life loved you back. 

Dearest Heather, even though we only met one time on accident. I felt a connection you. Going to the same clinic and having the same doctors. But the more I got to know you the more I respected you for your faith and uplifting attitude. 

So sweet cysters you lived beautiful and full lives and will never be forgotten your legacy will be one that lives forever in so many hearts. Breathe easy 

  xoxo

Grab a tissue mama

And I'm sure the view from heaven

Beats the hell out of mine here

And if we all believe in heaven

Maybe we'll make it through one more year

Down here

When I have a bad night this song hits me hard. Makes me remember so many that have gone before me. I miss them everyday and sometimes i get so tired of the hurt and pain. Not just for me but others around me that feel it to. 

There are nights like tonight where I keep thinking of there faces and I miss there friendships. I miss having people close to me that understands what I'm feeling but I can't bring myself to get to know more friends with cf because the pain of them passing just kills my soul. I'm accepting the fact I'll never have friends like that again and I grieve for them.

Megan my beautiful friend was so thoughtful and full of love. She loved her family and her god babies. She had a real love and passion for life especially after her transplant. I feel like in that short time she lived life fully and completely. I often think of our conversations about a cure and dancing. Megan was someone I trusted and knew I could ask her anything and she would answer honestly and truthfully. 

Maggie was a spit fire. Had the attitude that I admired. Brave and independent. Strong willed too. I remember so vividly her sweet 16 and I kick myself for not staying longer to visit with her, she was with her friends and I felt she should enjoy her day and not have to pay to much attention to me. Let her focus on her day. When Maggie passed I was numb. I didn't cry I told myself I wouldn't cry. At her funeral it was all to real. I remember going to seeing her and she looked beautiful and peaceful. At rest after a long fight. When they closed the casket I lost it. In the one moment it all was so real. The tears never stopped flowing and I have never cried so much in my life.  I felt depression over coming my body and mind and spirit. Maggie was my first real friend with cf to pass and it was something I carry with me to this very day. Maggie is my first angel. And she has guided me a few times and I'm forever grateful to call her my friend and my angel. 

Stephanie. The girl who stole my heart. 17 years old. We met though a friend who gave her my number to text just to have a friend who was older. And even though I was close to 10 years older then her she wS the one who helped me. She gave me courage and strength and she gave me a friendship I always wanted. She was my little Cyster. I worried about her. I would do things just to make her happy. I would send her box full of stuff during her hospital stay because I wanted to see that smile even when she was struggling she always had a smile. A passion for her family her niece and her boyfriend who was the love of her life. My regret Is I never said goodbye. I couldn't see this girl who I admired and loved like that. My own selfish reasons.  

Cf is unfair it's cruel and it ruins lives. 

  I miss having cf friends but the pain is to much to bear. When they pass a piece of my heart goes with them. 

Tonight is a night where hopefully  I'll dream of them running and having fun and I hope when we meet I can finally have my friends back. 

Love love love 

 Jessica.