The beauty of this incredible life...Takes My Breath Away.

These posts don't get easier to write. I am numb with sadness tonight. One of the greatest blessings of having CF is the incredible connections you make with others who have CF. On the other hand, the hardest part about having CF, BY FAR, is losing the ones you love and cherish to this devastating disease. I only met Leslie a few years ago. When we were introduced, she told me I was her hero for having the courage to go ahead with my pregnancy. I answered that she was MY HERO for showing us all how it's done...fighting so gracefully and being an example of a vibrant, beautiful and strong CFer!

This picture of us was taken last year at the Women Who Take Our Breath Away luncheon. Leslie and I were fellow nominees. As you can see by my red puffy eyes, I was grateful (and emotional) to be honored with and sitting next to one of my heros. 

You will learn from the video below that Leslie lived a life full of adventure and passion despite her physical limitations. She celebrated her 50th birthday this year and inspired ALL who knew her to enjoy life and live it to the fullest. Her days and months were filled much like mine, with treatments, coughing and in and out of the hospital, but she certainly didn't let that prevent her from completely loving, living and inspiring others to "BELIEVE...anything is possible!" 

Breathe Easy Sweet Leslie, you will be so dearly missed. 

She talks to angels ...

Today Lexi would be 31. On July 28th I will always celebrate the gift her life is to me. I miss her everyday. Sometimes I feel her talking to me or more accurately, speaking to my heart...

My mom always told me and Lex that she loved coming to tuck us in at night and seeing that we were holding hands even after we'd fallen asleep. We shared bunk beds so the one on top would hang their hand down and grasp the hand that would reach up from the bottom bunk. Can you believe we could fall asleep like that?! There are times I am compelled to look down at my hands because I feel like her hand is literally hanging down and holding mine. When I feel that warm vibration of love from Lex in the palms of my hands, I remember that I am not alone and that she is keeping her promise to be an angelic guardian.

I have felt her especially close lately as I accept and pursue the next step in my C.F. journey. After Lexi died, I felt strongly that when the time came, I would not opt for a double lung transplant. I witnessed the hell and helplessly watched the suffering Lexi went through post transplant and wondered at times what it was all for. Of course it was worth it for me and for my family because we got to have her for another borrowed 18 months, but was it worth it for Lexi?

It is hard to explain but I have felt the whisperings of Lexi's spirit to my spirit confirming to me that my experience will not be her experience. I know she wants and expects me to follow in her footsteps and fight like she did to stay on this earth and not take a single breath for granted. I have so much to live for and Lexi left a powerful Legacy. Putting her trust in the Lord and enduring joyfully to the end despite the pain was one of her most poignant lessons and I could not face her if I did not apply it in my own life.

Now that I am at this place, I am grateful that my hero was also at this place and showed how to walk the transplant journey with grace, humor and unbelievable fight.

Happy birthday Lexi, please maintain a tight hold on my grasping hands.

- Posted using BlogPress from my iPad

Day 15... Why my heart is broken but my faith remains strong...Breathe easy Katrina.

I was so sure this was going to be a post all about Katrina's miracle, full of excitement and hope. I can hardly bare to be writing a post about losing Katrina instead.

Yesterday I pondered the fact that I have truly loved and lost and loved and lost some more and hoped and dreamed and wished and prayed. Many of my dreams and hopes and things I have fervently prayed for have come to pass but many have not.

16 years ago, I didn't believe my little sister Lex was going to pass away until she took her last breath. Despite the doctors giving her 3 days to live and the fact that she was receiving hospice care in our home, I still believed we would get a miracle and she would pull out of it once again. Why didn't this unanswered prayer destroy my spirit and my faith? In the midst of my anguish and sorrow at losing her, how could I still believe?

Something very special happened, maybe a small miracle in and of itself considering how fragile my faith was at that time. Instead of losing my faith, it was strengthened and instead of doubting my God, my beliefs were reaffirmed and became rock solid.

The pain was still there, debilitating pain and greif, but peace and an eternal knowledge were also there. I believe in God's plan for his children and I believe in His timing. I don't always understand it. I don't always know if I am strong enough to bare it, but I believe in it.

My faith and my beliefs are not a coping mechanism. They certainly help me cope with life's trials, but that is not why I believe. I have pondered the Atonement and the Plan of Salvation and have prayed to know that there really is life after death and that we really will be saved by our Redeemer if we have tried our best to love as He loved and tried our best to follow His perfect example, and my body has literally burned with confirmation in the affirmative. It is something I feel in my heart, in my brain, in my very bones. The truth of it fills my soul.

So, although I have shed many tears these last few days and my heart is broken that Katrina is gone from this earth, I believe God took her home for a reason. There had to be a reason, especially after more than forty people came forward to be tested and two selfless people (strangers to Kat) were found to be suitable donor matches.

I also believe with great joy that Katrina is celebrating a beautiful reunion with the sister she lost years ago to her same disease, Cystic Fibrosis. And last but not least, I believe Katrina is finally breathing easy.

Look at that never failing smile. I love you Katrina and will forever hold you in my heart. Give Lex a hug for me...

- Posted using BlogPress from my iPad