I have been documenting some of the humorous things that happen with Avie, that relate to CF. I've even created a hashtag for it on my Facebook page. Then I realized that some people may take it as complaining, or trying to get attention for myself. So, I decided to do a little explanation and I think this is the perfect summary of my thoughts and feelings right now:
When Mike and I found out that our baby was going to have cystic fibrosis, we were devastated. All we knew about the disease at that point was that it was life-shortening and would mean that our child would be on tons of medications, have difficulty breathing and be in the hospital a lot.
But then we started meeting some amazing people in the CF community and did more research- and something changed for us. We began to be excited about accepting this challenge and looked forward to meeting our baby girl and being able to care for her as no one else would be able to. Mike even said one day, "If by some miracle she doesn't have CF, I will actually be disappointed".
Just like with any new baby, parents experience ups and downs. There is a lot to be frustrated with as a CF parent. Sometimes I still get depressed when I think about how different my experience is from other new moms. And that is why I made the mommy problems hashtag (with the added benefit of bringing awareness). I want to remind myself that there is humor in this. And I want to be able to show that side of things to Avalyn when she is older so that she can have a positive outlook on all of this.
We know that this is not our cross to bear- it's Avalyn's. And all we can do is raise her right and teach her responsibility so that she can take care of herself properly. I will probably be sad when I don't have to count her pills for her anymore or remind her to do her CPT therapies every day... But right now, it's on Mike and myself. It's hard but we actually enjoy it. What Mom doesn't want to do a good job caring and providing for her baby? I'm lucky that I have so much to be responsible for with her. I'm proud to be a CF Mommy.