June 8, 2015
It's days like today that make me both resent & respect cystic fibrosis.
My sweet comedian of a daughter is sick today and I am not there to take care of her. Instead, my amazing husband, with the help of his equally amazing Mother, is caring for her and keeping me posted. I feel powerless lying in a hospital bed right now. And even a tad resentful.
On the flip side, I believe that all of the hospital stays and ER visits this past year are nature's reminder of the importance and priority of daily cystic fibrosis (CF) maintenance. I need to respect CF enough to know that the daily CF treatment regimen is of top priority. If the daily treatment schedule is not followed properly and consistently negative health consequences are likely. For example, the more I follow the daily CF treatment regimen, the better my chances are of having a good quality of life, perhaps even increasing my lifespan.
Every night, while lying in the hospital bed, I watch home videos and flip thru about a thousand photos of Hattie and Eric. As I flip thru the first few pictures I resent what CF has done to my health over the last year. I resent, despite everything I did to keep healthy before, during and after pregnancy, that it wasn't enough to avoid this massive shift from my CF baseline.
Part way thru my phone's photo album I am beginning to feel better about being in the hospital for the sixth time this year because I know this is what it takes to keep me well. Bottom line, I know what it takes to get my life back. So, it doesn't take long scrolling thru my pictures before I know, despite missing my friends and family terribly, I'm right where I'm supposed to be-nurturing myself before I'm able to nurture those around me.
To those of you supporting our family's journey, I want to thank you. Now that we can pay some of the current and future medical/medical-related costs, we feel a great sense of relief. However, I feel an even greater sense of gratitude. All of your posts (whether it be via FB, twitter, the warriordefinesher blog, the youcaring page, Instagram, etc.,..) have lifted our family's spirits and continue to restore our hope and faith.
As many of you know I'm still in the hospital. Several times throughout the day I read and re-read your words of support and encouragement which, by the way, inspire me to get out of bed every day and do my treatments! Your words of love and optimism keep me motivated to do what I need to do to get my life back!
To all of you supporting our family, you will always have a big place in my heart. To Eric & Hattie, thank you for your patience with Mommy. I'll be home in no time. I love you two pieces.