Archive | March 2012

The Best Quote I’ve Read in a Long Time

My sister-in-law posted this on her page just the other day, and I thought with all that is going on right now, it was the perfect quote to share.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth Kübler-Ross

I will be starting a Caring Bridge page (with my sister’s approval of course) within a few days or so and will share that link once it is created.  Once that is up, I will be able to share exactly what has been going on over the past few weeks.  I’m sorry for the secrecy, but this has been a personal battle that we, as a family, have had to absorb prior to sharing it with the world. We still have a few young family members who do not know what is happening yet and that is why we can not share what is going on.  Please just know that my entire family is grateful for the prayers, good wishes, and support that have been given to us.  We ask for those continued prayers and support as she begins her treatment today.

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A Hiatus From Blogging

To my dear readers (who mean the world to me),

I just want to let you all know that I am not certain when I will be blogging again.  My family and I are going through a very rough time and I 1) don’t feel like writing at this point and 2) need to be there for my family.
If you are the praying type please know that we need all the prayers we can get right now.  If you believe in sending positive vibes or thoughts, please bombard us with them.  We believe in the power of prayer and good wishes.
If you are the type who would like to pray with a name, we are praying for my sister and her name is Ellen.
I thank you all in advance for the support, love, understanding, and obviously the prayers.

End-Stage Cystic Fibrosis

I debated about whether I wanted to write this blog for a little while this morning.  I decided, ultimately, I want to share my thoughts about this topic.

A few weeks ago, I had heard from some of my English friends who also have CF, that a documentary was airing about a 21 year old CFer, Kirstie Mills.  Kirstie was in the end-stages of our disease and was placed on the transplant list.  During her time on the transplant list she was also planning her wedding, sure that no matter what the outcome, she wanted to spend the rest of her life with the man she loves.

This is going to sound terrible, but when I first heard about it, I was somewhat relieved it wasn’t playing in the U.S. because I didn’t think I could handle watching it.  I have known one person very closely, who has gone through transplant, but I never saw him prior to that. I’m going to be 100% honest right now and say that it terrifies me to think about the end-stage of this disease. I don’t like thinking about not being able to walk without oxygen, or not being able to do the normal daily things that I currently take for granted.  I am petrified about the changes that come with end-stage disease.  So, I was glad I didn’t have the option to watch it.

Then, I found out it was being aired in the United States under the title, Breathless Bride: Dying to Live.  Suddenly, I had to face the decision of whether or not to watch it.  I, sadly enough, chose not to watch it when it aired last night on TLC.  I just didn’t think I could emotionally or mentally handle it last night. I didn’t even DVR it.

This morning, I woke up and realized that I needed to watch it.  My sister-in-law had seen it last night, and I was honestly kicking myself for not watching it as it aired on the television.  After preparing myself for the tears that I knew would come, I found the link for the youtube version of the show, and I watched it in its entirety.  Yes, I cried. Yes, a lot.  But, there was more to it than that. I was truly, honestly, inspired by Kirstie’s story. She maintained a sense of hope and optimism through the entire transplant process.  She showed me that while the end-stage of this disease are just as terrifying as I imagined it to be, it’s not hopeless.  There are days that are better than others, and there is still love and hope and happiness during that time.  It’s just always overshadowed by the hardship of breathing.

Kirstie’s story had a very happy ending. She has received her new lungs and is doing wonderfully! I want to remind my readers one more time that CF effects every single person differently.  Kirstie needed a transplant at 21, but there is also an 84-year-old man living with CF.  CF is not a disease that can be easily defined.  That said, the following video provides a wonderful look at what the end-stage of CF looks like, and what it is like to be on the transplant list.  I hope you take the time to watch it, think about becoming an organ donor, and also think about making any sort of donation (time or financial) to the Cystic Fibrosis Foundation.