Thursday, April 24, 2014

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.

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