Today I'm just down

I'm in a mood today. I didn't wake up in a mood. The morning was quite nice actually. We slept in until about 8. And then after morning treatments and breakfast, I took the kids to an indoor play place for a few hours and everyone seemed to have a lot of fun. I didn't use to take Drew to many places like that for fear of germs, but now that hes walking and into everything, seeing how much he enjoys it just forced me to let go a little. Not everything goes into the mouth directly anymore, and I have to realize that hes going to be a kid just like every other kid - fingers in the mouth and up the nose from time to time, finding a drink and going for it whether or not its his, sharing toys with other snotty little ones - germs just happen. And all I can do is be reasonable about things by wiping hands and noses after play and before eating, cleaning toys, keeping him away from situations that I know are likely to make him sick. But I think about Ella's little preschool this past year - there wasn't a day that went by that someone in that room wasn't rubbing snot all over something. Thinking of Drew in that situation sends me into anxiety overload. But what am I to do...

Another thing thats been frustrating me lately is the lack of interest and understanding in what CF really is, how bad it really is, and how it is affecting us. Its a balance, I get that. I try to balance. He looks healthy. Hes not. I'm scared for his life. I want him to be treated normal, but I also want people to understand what CF really is and what it really does, and I don't know how to get that across. Would people donate more if he was a frail looking little boy who carried around an oxygen tank? Probably! Thats the sad reality for me. Perception is reality. I should put together a video of what our days look like. If you could see how much time is spent on his care in 1 days, it might change the way you think about it. But I don't know what I want you think about it! I don't want pity. I don't want you to feel sorry for him. I want you to fight with me against CF for a cure. I want our knowledge to be productive. Thats what I really want. I don't want people seeing him and saying "It doesn't look like there's anything wrong with him!". That makes me crazy.

The other thing thats been making me nuts is smokers. F you all. There was a woman ON THE CF WALK who was smoking a cigarette. She hung a left before I had the chance to go off on her, but how dare you smoke on walk raising money to research a disease that affects the lungs. How DARE YOU! How dare you, lady in front of Walmart who was probably in her 50s but looked like she was in her 70's smoking a cigarette, how dare you bitch to the pharmacist about your insurance when my son is fighting lung disease and he's never smoked a goddamn cigarette in his life, yet I spend HOURS on the phone fighting insurance companies who don't want to cover his health care. How dare you.

There is a girl in Cincinnati named Alicia who is 17 years old and is waiting for a double lung transplant because her lungs are completely deteriorated from fighting Cystic Fibrosis. Her insurance company will only cover 80% of the 1.5million dollar procedure. She has to stay in a sterile environment for weeks after having the transplant so that she doesn't catch something that could cost her her life. And this is all if lungs become available before its to late. She is 17. There is another girl, Claire, who just turned 14 years old and is dying from lung disease, but she can't have a double lung transplant because her body would reject new lungs. Having the procedure done would likely kill her. Not having it done will surely kill her. Another little boy who was 7 passed away shortly after Drew was born from Cystic Fibrosis. He was 7! And then THIS article where a professor and psychologist at the University of Wisconsin-Madison School of Nursing stated, “In my opinion, it’s just tragic that parents have to suffer and think about their child having a chronic illness when the child is perfectly healthy.” So sorry for you. My son has a lifetime of suffering, so sorry that you had to go through two weeks of stress because of a false positive. You should be thankful that there is a test that can catch these diseases when they are newborns and save lives.

These are all just kids!! Its just not fair! I know that a lot has happened over the past several decades that has extended the life of many CF patients, but theres still just no telling when you're going to catch something that you just can't shake or when CF is just going to get the best of you. Most days I can wake up and put on my positive, fighting attitude and go out fundraising at every chance I get, but today I'm just down for no particular reason. I'm scared of it. I'm hopeful and I'm optimistic but I'm still scared. I always have a lump in my throat for a week before we go to the clinic because I know they will take a culture and I never know what will come back. I just wish it didn't have to be this way. I'm hopeful about things. I'm hopeful that there will be a cure found in time. Today I'm just down about it and I needed to let it all out.