|Complications after birth from CF|
Who would have thought that 2 people (Jack and Myself) could be carriers of Cystic Fibrosis? And then to top it off, who thought that when two carriers marry they have a 1 in 4 chance (25%) that their child would have CF? And what were the odds of everything working out that our child WOULD BE that small 25%...and she would get Cystic Fibrosis. Well, here were are today. We never win the lottery, but unfortunately CF won that time...
This brought up a lot questions in our family like..."Where did the gene come from?" We have no known history of it from either side...at least not of the disease being known. Take a look at this diagram.
|This shows how both Jack and I were carriers and M became the "affected" with CF.(1 in 4 chance)|
He is negative.
There are so many mixed emotions that came with this news today. I am not sure I can completely describe them so I may sound sane. So, please forgive me. Really, this was hard to swallow for me. It's not because I would ever WANT my brother to be a carrier, to have the possibility to making a CF baby if his wife was positive too. I think this really is hard because I look at our chances. My brother and I both had a 50% chance of carrying this disease and life dealt him the better one. That is just hard.
I had this feeling that he was positive..... I thought that it would be great for him to have a heads up, unlike we did. He would know he was positive and know that he would have to take precautions. His wife would need to be tested. They could opt for other means of conceiving a child. In some ways, as selfish as it sounds....Madeline, and our family would "protect" him from the CF gene. We would walk away feeling as though we prevented the pain that Jack, Madeline, and I live with. Instead....
I just feel a little lost.
I tried looking at Madeline today the same I do everyday. Everyday I have so much hope for her. But somehow, the news of my brother got in the way. I wanted to cry for her today and tell her how sorry I am that this all happened the way it did. I wanted to block the pain of having to explain to her how she was the "chosen one" and how we wish we could have not given this horrible disease to her.
Today is just one of those days that is making me think more about CF and the tolls it takes on your heart.
It's weighing heavy on my heart for those like Madeline who were "chosen" to fight this disease. It reminds me of the struggles we all face with CF. I hate it. I really do.