one day at a time . . .

I woke up this morning to amazing news. A fellow Cyster, that I met at the CF Walk this past May, got her call for new lungs! This just made my day as she has been struggling so much lately. From the day I met her, she has always been on my mind. Such a young, beautiful lady, with so much strength and courage. I am so happy for her and I hope the surgery is an amazing success. I also pray for the donor family;  such an amazing gift of life during a devastating time of loss.

As I think about all the amazing CF stories I have come to follow over the past few years, it boggles my mind how NASTY CF just IS. I sometimes feel guilty; why has CF given me the gift of such a long life and there are so many dieing young, going through transplants so young, just going through so much more at such a young age. My Cyster going through her transplant today is only 27.  She has spent the last 7 months on IVs, on oxygen and in a wheel chair. Here I am, 44 years old, with a 16 year old son. Yes, I suffer, but nothing compared to my fellow cysters and fibros. I wonder, when I communicate with them, do they feel a sense of resentment towards me?

We’ll never know why… I choose to believe that my purpose is to spread awareness, raise money for research, and maybe one day, live to see the cure. I know a “cure” will not cure me, as whatever damage is done cannot be reversed. But, what an amazing accomplishment to be a witness to! The cure will at least, hopefully, help me not to experience any further damage – which would be AWESOME! Just stop it in it’s footsteps! And, this would mean that although my son is a carrier, he will not have to worry about having a child with CF!

My son is my reason to fight! I believe I was blessed with his birth in order to give me the strength to fight even harder every day. I DO hate that he has to grow up watching his mother suffering. He did admit to me recently that he worries if I will be here for his HS graduation, college graduation, and other special times. I hate that he has to have these thoughts. He should be enjoying his youth and not have to worry about his mother.

My worries regarding my health have increased lately as it’s been a tough 2 years. I’ll be damned if I’m going to let this bring me down. I will continue to fight. Worrying is normal. I have complete faith in my doctors and know they are doing everything they can to delay the need for transplant.

This post is just filled with a mix of emotions. I ask anyone reading this that they please include my dear Cyster in their thoughts and prayers as she goes through a life changing surgery, and also pray for the donor family. What an amazing gift of life. Think about donating your organs after death. So many Cfers die waiting for a transplant because there are not enough donors out there!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: