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. 

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.

----------------------------------------------------------------------------------------------------------------------------------

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.