As anyone that has any type of relationship with CF knows, a CFers life is far from normal. Our daily routine does not resemble anyone else’s and therefore, only a CFer can really understand what we go through: both good and bad. On that same topic a parent, sibling, or spouse has a reality of the disease that only another parent, sibling, or spouse can understand. Although there are many difficult aspects to having CF, one of the biggest injustices is that we are unable to come in contact with other CFers. We all carry unique germs that will spread ramped among one another. I used to long to have a best friend that I could have sleepovers with. How nice it would be to have dinner and know that if I forgot my enzymes my best friend would let me borrow hers. We could start our treatments and do them side by side, not caring how red each other’s faces turned when we worked so hard to cough out the toxic mucus from our lungs. How neat it would be to stay up late and talk about the scariest part of the disease and know that someone else whole heartedly understands. Alas, in order to remain safe and healthy this has always been impossible.
As I have gotten older, I found that although it is not the same as the slumber parties I once envisioned, the internet provides a version of that understanding not found anywhere else. When I decided I wanted to have a baby I searched everywhere for information. I talked to CF Drs, OBs, and scoured the internet. I found enough information to make an educated decision, BUT I still had no idea what it was like to be pregnant/mother with CF. Was there nagging guilt because our lives are so different from a non-CF mother? Was their nonstop fear throughout pregnancy? What thoughts creep into your head late at night when you know that your child will someday ask you about this awful disease and what it means about your lifespan? No research journals or Drs could give any insight to this information.
This is where the internet came into play. I searched for blogs. Real life examples of what it meant to be a mommy with CF. Funny thing was I found most mommy CFers were VERY unusually healthy. Many boast how their lung function is in the 90s and 100s. They start to worry when their FEV dips to 80 which is a number I haven’t seen in YEARS. Did this mean that a baby was out of the question for me? Was there anyone else like me that had a successful pregnancy? Don't get me wrong, CF is hard regardless of your numbers, but for me those types of blogs are harder to relate to. I have found one other blog of a CFer with similar lung function. The woman is already pregnant and I hang on to every entry to get a glimpse of what it may be like.
I decided that with my imperfect lungs and my typical CF PFTs I would start a blog of my journey so that people can get a glimpse of what being a hopeful CF mommy is like. I can’t make any promises and have no idea if I will be successful, but I sure will try.
On to the second reason! I blog because I have 2 ½ hours a day that I am hooked up to machines and have very little I can do. I have the old vest which is HUGE and not portable that makes a ton of noise. TV is out of the question because the thing is so darn loud. Well, not to mention my husband and I don’t own a TV. We know we are weird. I am also shaking so violently (vest) and the nebs spray mist which makes reading books out of the question. I decided to blog to give me something productive to do.
My fellow CFers, friends, mothers, or siblings of CFers, feel free to follow along on my journey. If you or someone you know has an awesome CF blog let me know!
BTW if you send me a comment make sure to check back! I promise if you take the time to comment I will always take the time to write back to you!