May is National Cystic Fibrosis Awareness Month!
I have a lot of posts covering CF, so if you want to learn more, click here to see all my Cystic Fibrosis related posts. And here are some specific links below:
Just like every CF patient's journey with the disease is different, every family's journey battling the disease and coping is different. Lance and I try very hard to live life as normally as possible. And, while I think we do a fairly good job, Cystic Fibrosis is always there in our minds, that ever-present thought that you just cannot ignore.
We have been very thankful that we have kept Crosby healthy and his CF under control thus far. However, we know enough that we are fully aware that could change in an instant. Every virus, every exposure has us holding our breath, wondering how his body will handle it or what is next or when will the sky fall out. Hoping for the best, but preparing for the worst is a stressful place to be.
For now I take solace in the fact that Crosby is too young to know what CF is or that he is different. For now, Lance and I carry that burden for him. But my heart aches for the day when he realizes that not everyone takes enzymes to be able digest their food and absorb nutrients. I hurt to think of the day he realizes that he is different from other kids and resentment that he will feel. My heart aches for the day he realizes that he has a disease that is classified as terminal and I have to explain mortality to my child.
I have heard CF called the "Beautiful People" disease. Looking at Crosby, you would never know that he has the most common fatal genetic disease in the U.S. But Crosby is fighting it every day. We fight so that he will remain healthy. We fight so that he can live.
CF is ugly. CF is inconvenient and exhausting. CF is unfair and hurtful.
We need a cure.
Please consider donating to the Cystic Fibrosis Foundation and join our fight!
Click below and join our Great Strides team by signing up for the walk or making a donation.
Love,
Carmen
P.S. In honor of Crosby and CF Awareness month, for the entire month of May, my friend Rachael over at Razzlewraps is donating $1 of the price from every wrap sold to the Cystic Fibrosis Foundation!!! Her baby head wraps are so unique and so cute and I am so very grateful she is supporting us in this way. Please check out her store here: http://razzlewraps.storenvy.com/ and follow her on IG here: https://www.instagram.com/razzlewraps/ They make fabulous baby gifts!
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