Do you want to know my opinion on the hardest part of being a CF mama?
It isn't finding out the life span for a person with CF is just 38 years old.
It isn't learning how to give a baby enzymes before each feeding.
It isn't all the stats and emotions you are flooded with.
There were a lot of things going through my head that day Cayden was diagnosed but really and truly the hardest part of learning he had CF was when the doctor said "males are sterile."
What a really crummy side effect from a disease. He is just a BABY! How could he already be sterile. In the week before his sweat test that thought had never even entered my mind. As I scowered the internet to see what ethnicity backgrounds traced their roots to CF, how old patients lived, what it did to there life. I missed it. Completely missed sterilization.
Immediately the questions and thoughts had changed. I won't ever know the joy of being a grandmother. How terribly helpless I felt holding a 3 week old that I would one day have to tell would not be able to naturally produce children of is own.
In my mind's eye I saw his future girlfriends. Would anyone want to marry him? How devastating to fall in love with someone and then have to tell them such a life sentence.
My heart was broken.
It's definitely not the thought that hovers over me from day to day. Sometimes I forget about that. And then someone asks what long-term effects there will be. And I remember again. Like its the first time. CF just isn't fair. I wish it would have asked me my opinion first.