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. 

Jessica Sweeny/ update on Kyladco

Just because we never met doesn't mean I don't hurt for you. For your pain and for the life you will never experience. 17 is to young. To young to live most your life in a hospital, to young to feel your body deteriorate right before your eyes and to young to feel so much pain.

Jessica Sweeny earned her angel wings. A beautiful girl a beautiful life gone.

CF has no limits on who it takes. It will take mothers and fathers sons and daughters brothers and sisters it doesn’t discriminate. So tonight a mother is longing to hold her daughter one last time and my heart hurts for that family and every family before her and can relate to the pain of loosing someone they love. Even though I used the term “loosing” as in the are lost….it couldn’t be more further from the truth, they are right where they should be in heaven with the other angels and warriors rejoicing in there new found freedom from the world of being in the hospital for weeks on end. Needles and Ivs Pills and pain all go hand in hand in our world.

When someone with CF passes a piece of you hurts for them for there family and loved ones. A piece of you goes with them.

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Sometimes you don’t get what you want but you get what you need.

I wanted to feel like the new medicine was my hope in a bottle something to hold onto that my life could have some normalcy. Instead I needed to know that regardless of the outcome of all this I will be okay.

I accept that this is all beyond my control and as much as I hoped and prayed it would work and be my saving grace im starting to get this gut feeling that this is as good as it gets. I could complain but what good would it do? Im able to live a relativtly normal life and there are some days when I really feel decent but there are also days when it gets hard to do anything…physically and emotionally . Having an invisible disease doesn't come with invisible pain or heart ache. I'm hoping I will soon have better days and this will all be a thing of the past. hopefully.

Just an update

The last few days have been sucky, some tummy issues are something I'm not use to and I hope it stays that way. 

I haven't noticed any changes and honestly I'm worried I might be inspecting and analyzing  every cough and ache and pain to much. 

There are times when Matt and I will be talking and we realize this could be the new beginning for us. So many opportunities can really happen if things start to work the way we hope they will. Maybe traveling and starting different projects and finishing things in the right time instead of waiting till I feel good. The things that could be possible for me is overwhelming but like I said high hopes comes high disappointment. 

So as always it's one day at a time enjoying what I can,when I can. I hope you all are well and good things are happening for you. 

 Peace love and hello kitty