Entry #5: Germ-a-phob

Please don't touch my kid.

Even before I had O, I was kind of a germ-a-phob. I keep a bottle of hand sanitizer in my purse, and yes, after shaking your hand I most likely used that marvelous gel to put my mind at ease. See, I used to get upper respiratory infections regularly--almost every month. It felt like as soon as I recovered from one, the next would start up. It's not that I'm afraid of getting dirty--I love to camp, play in the garden, and other such fun. People though, well, you never know.

CF kids have mucus--lots of mucus. Thick, sticky, nasty mucus. Viruses and bacteria love mucus. We all have mucus in our lungs, but CF kids can have a hard time keeping it from sticking in their lungs and harboring germs.
Your lungs don't do a marvelous job at recovering from respiratory disease. It's important that CF kids maintain healthly lung function as long as possible. I had pneumonia pretty bad when I was 20, and since then any cough, chest cold, or other such ailment really is painful. My doc said my lungs are pretty scarred from the pneumonia.
Having that experience makes me pretty aware and cautious when it comes to O's lungs. If we're out walking and have to pass a smoker, I cover O's face. During cold and flu season (typically from October to March) we avoid other kids (especially those we don't know, or those that go to daycare). O uses a vest that vibrates his chest and helps loosen mucus from his airways. We know of other CF kids who use inhalers and ventilators, or other medications to keep their lungs functioning at their best. Thankfully, we haven't reached that point, and Lord willing, we won't.

This is the scariest and hardest part of CF for me. Even before we knew O had CF, I would jump if he started coughing. Now, coughing is vital to his health, and at the same time can be an indicator of something bad.

When O was not quite 2 years old I took him to the park. He had blast running around, swinging, going down the slide, and just playing. Then he started coughing. Hard. I swooped him up into my lap, and he continued coughing really hard. He rested his whole body into my chest, coughing so hard I thought his lungs were falling apart. The other moms at the park looked worried. I'm pretty sure I did too, but something took over my body. I let him sip water in between coughs to keep his throat moist, and I spoke soothingly over him, all the while praying earnestly for my God to clear O's lungs. I also was pleading with my eyes to the nearby building where my husband was working, in hopes that he would come running to aid me and keep my fears at bay. I wanted to cry. It felt like he was coughing for several minutes, but it was probably only seconds. Other moms were offering cough drops or other stop-the-cough solutions, and I tried to smile and gently explain thanks, but no thanks. Some looked at me as if I was a horrible mother, but I know they just didn't understand. He finally stopped, took a big drink of water, and scrambled out of my lap to continue playing as if nothing had happened. I, on the other hand, was shaken. I pretended that it was "all in the day of the life of a mom with a kid that has CF," but inside I was FREAKED. When my husband came home, I broke down crying and shaking. "I don't know if I can do this."

Coughing spasms rarely happen in our house, but when they do it's usually because a lack of activity or respiratory therapy. So, we are vigilant with O's vest therapy, and also incorporate good nutrition (failing to thrive, or not maintaining calories and a good diet can lead to poor lung health and development).

However, there is still the issue of other people. Other people's germs. Another CF mom was a great support to me. I was starting to feel isolated, avoiding events with friends and get-togethers with family, all in the name of protecting O. I also worried what friends and family thought of me. My friend was awesome--"Which matters more: what your friends and family think of you, or your child's life?" That's a no-brainer. My kid totally trumps whatever activity, event, or otherwise you've got going on. Sorry if that makes you feel bad, but I think you'd do the same in my situation.

Finding balance is a trick too. We don't want to be home all the time--that's not fun for anyone (especially O, who LOVES time with friends and family). My husband and I evaluate every event, weighing all the risks (CF related or otherwise) versus benefits, and then prayerfully make a decision. We've made mistakes, and O got sick. Usually when we look back at those decisions we see that it was more of our lack of confidence in saying no to a friend or family member that led us to making a poor decision. We recently renewed our dedication to making decisions based on our family's priorities and needs, not other's opinions.

I hope you're not offended when we turn down your request to attend an event. It may not be because we think you have germs. It could just be it's not the best thing for our family. If I use my hand sanitizer after shaking your hand, well, that's just because I'm a germ-a-phob.