I want to lock myself away where no one can get me sick or compromise my lungs...but I force myself past that instinct to self preserve so that I can live everyday like the blessing and gift it is. There's days when Anxiety would consume me if I allow myself to overthink everything. I have accomplished so many things with my donor lungs. Things that scared the HELL out of me & excited me at the same time. Again fear and anxiety are a side effect of the traumatic experience that IS organ transplantation & the meds that keep me alive. I smile and laugh when sometimes I just want to scream and run away and hide in a quiet safe place. The Internal struggle is hard to deal with. I'm not afraid to talk about my life post transplant and despite how physically healthy I appear...it comes at a cost.
I know many beautiful strong CF warriors who's spouses leave when life becomes "too hard"...I am blessed with a wonderful, patient, loving husband who has endured this journey lovingly by my side for the last 17 1/2 years. He promised to love me and care for me when we met in 1998 and I have never doubted his commitment and unwavering devotion to my happiness. I am so blessed.
I borrow strength from him more than he may even know. I feel like I have to pretend I'm stronger than I am but he knows me and he loves me when I'm strong and when I cannot be. So maybe I only have years or months but I have faith that God watches over me and has a plan...I believe I have a purpose and when my purpose on this earth is complete than I know I have a purpose in the next life and I will be ready for it. All my CF friends who suffer, fight and gain their angel wings also had a purpose and they were called to their new purpose in Heaven and now are watching down on us & helping from above.
The hardest thing to say is "goodbye". . . But it's not "goodbye" it's "see you later".
My life has taken me many places and put many beautiful people in my life and that is what life is all about. That is why I continue to fight, to try to inspire others and live each day finding happiness in little things. Somedays are easier than others...But as long as I have Bryan I have all I need.
The Moulin Rouge says it best: