There is a woman, whom I have never met, who lives in Florida and has an almost 4yr old daughter who has CF. The other day, she posted on her blog about decision making that involves CF. I swear it felt like she wrote the exact words that I often think. Everyone involved with CF can understand how all encompassing this disease can be. And how much you just truly hate every part of it deep down, knowing that it can steal a life at any moment. And how much you struggle to keep your life as normal as possible, both for the person with CF and for the other family members, and frankly for your own personal sanity too. But its hard. Its really really hard. When Ella started pre-school this fall, I was a wreck the first time she came home with a cold and then Drew got the cold and I though I really should pull her out of school because its just to detrimental to Drew's health to have her bringing all of these germs inside. But the more I thought about it, I realized that some day she was going to go to school. Sure I could have prolonged it, but it was going to happen eventually. And the same for Drew. He will go to preschool and to 1st grade and to college and hopefully do all of the other things that any non-CFer would do. But my goodness is it terrifying every time they get a cold. That first call that he had pseudomonas - devastating. You kind of know and expect that at some point in time it will happen, but you just think and hope that it won't happen to your CF kid.
There was one paragragh that my blogger friend wrote that really hit home with me. (if you're reading, I hope you don't mind me sharing!). She wrote,
" I have such a social little girl on my hands, whom I don't want to ever have to tell " I chose ___________________ because you have C.F." I don't want her illness to define her, or have her life filled with choices and options that were tailored to C.F. I want her to do things that everyone else said she couldn't, I want her to build lasting relationships with people who support her and lift her up while she is hurting.
Is that not the truth or what! I am going to try to live by that. If I have to make a decision regarding Drew or my girls, or anything in general that may affect our family, I'm going to first ask myself if I will have to explain it in terms of CF. I refuse to let this get the best of me. I didn't invite CF into my life, and I'm certainly not giving it the power to make decisions for us!
I don't want Drew to miss out on things that Ella enjoyed when she was his age. I loved taking Ella to story time and on playdates, but this winter we rarely left the house. When I pick Ella up from school, she gets a thorough wipe-down with antibacterial wipes. Friends who I regularly had over previously haven't been inside our front door in months. We don't go to the museum, or when we do, the twins stay in the stroller. We don't go to storytime or music class. I made excuses for getting together with friends so that their healthy kids didn't bring any weird germs into my house. And still, we had a sick sick winter. Drew was on different antibiotics from October through the first part of March. Every time he got a cold, his lungs created the perfect environment for bacteria to grow because he can't cough and clear a cold like you or I can. And its terrifying.
Another blogger, who unfortunately lost her 7yr old son to CF about a year ago, wrote on her blog retrospectively about how as much as she'd gone on and on about how CF didn't define her, it really did. And to be honest with you, its hard for it not to! When you have to get up extra early to get in all of the breathing treatments and medications, and you can't go places in the evenings because of the airway clearance regimen that has to happen. And the doctors appointments, for well and for sick checks, that happen oh so frequently. I find myself always telling Ella to wait just 1 minute, either because we need to finish up Drew's breathing treamtents or because we need to get him his enzymes before he eats. We forgot his enzymes on a recent trip to the zoo, and I did everything in my power to not ruin the afternoon for all. I gave him the only foods I could find without fat in them, the only things he can eat without enzymes, while the girls ate pizza and goldfish and cheese, all foods he loves. He gets sick if he eats without his enzymes, but if I needed to get his enzymes, that meant that the fun at the zoo had to come to an end...because of CF.
I try hard not to let it define us. I want him to live a normal life, but that fear of him catching something un-treatable, or getting sick with something that would require a hospital stay and send our happy little family into even more of a tailspin, all of that stuff forces us to be extra careful. Lunch out is a freakin' workout, let me tell you. It takes me 10 minutes just to get the restaurant high chairs disinfected. Then making sure that the table and anything within his reach is also cleaned. Any food or cups that hit the floor are history. I seriously look like a crazed woman, but I have to do it. And I do it happily, and will for the rest of my life if it will keep my baby boy healthy.
The median life-expectancy for someone with CF is 37. Thats the middle. Its not the average. Half of the people in the world with CF don't make it to 37. Out of the 30,000 people in the country suffering from Cystic Fibrosis, 15,000 will die before they are 37 years old. I try not to think numbers. I try very hard to live in the moment and enjoy our life and our family. But the devil in the back of my head is constantly shoving CF down my throat in the form of a neighbor sneezing on our wagon or a stranger reaching out to touch a smiling baby. Maybe I need anti-anxiety medicine. The mother who posted on her look back at how all encompassing CF became in her life said she would have just let it all happen, let her son live his life. I don't know that I believe her 100%. I believe that she wishes she would have, or could have. But I think its natural instinct to try to protect, and I'm doing that the best way that I know how.
We won't be hermits forever. Once the germy season is over and we can get outside I will try to ease up. Once the babies get a little older and Drew doesn't put everything and anything in his mouth all of the time I might be able to ease up a little bit. I know that people don't understand, and thats okay. Its not your situation, its mine, and I'm dealing with it the best way I know how. Its unfortunate that its alienated some friends, but I've made lots of new ones. Don't stop asking me to hang out. Don't get offended if I say no 99% of the time. Please respect my family and the illness we are dealing with by not brining germs around us. I know we can't live in a bubble, and I don't think we do or want to, but we need to be cautious and careful so that we can get the best of Drew and CF doesn't get the best of us.
In another note, I want to go public with my decision to get rid of the negative in my life. I have enough negative that I have to deal with regularly, and I don't need unnecessary negativity bringing me down. I'm going to stop reading blogs that I think aren't nice or I simply don't enjoy. I can use my time for better. I'm not going to waste my time with people who I simply don't enjoy being around. I know that I am a good person and I try to do as much good for as many others as I possibly can. I'm sorry if I offend you in any way, but I'm just living my life the best way that I can for my family and for my future. If you think thats selfish, well, so be it. You're not gonna get me down!