Because of the thick, sticky mucus that resides in a CF patient's body, germs have a tendency to really set up shop, fester, and cause big problems. I find that I am and was no different than a lot of CF parents, especially when Judith was so little. If you've been following us for a long time, you may remember reading about our times under lockdown to protect her from a bad flu outbreak, RSV, etc. And as a new CF parent, I wanted to sanitize everything and was pretty anal about who and what Judith came in contact with, just to name a few. There are still things that I won't let her do (barefooting it on a hospital floor, for example), and honestly I wouldn't let any child do that because hospitals are gross places.
There are also many things that I have learned to relax with so Judith can have as normal a childhood as possible. CF is a part of who she is, and yes we do have to revolve some parts of our lives around treatments and appointments, but I also don't want it to become so consuming for her and us that she won't get to experience some normal childhood things.
As a side note, I totally realize that this is what WE are choosing, while other families will choose to do something else. And that is completely ok. No two families are the same or function the same, just like no two people with CF will be affected by the disease in exactly the same way from every angle. The important thing is choosing to do things that work for your family and your individual situation.
I admit that part of the reason for this post is a pat on the back to myself, because I didn't flip out and immediately want to put Judith in the tub for a bath or want to sanitize everything she would come in contact with. In fact, with her starting to attend Sunday School this past year, both John and I were able to really learn to relax over her touching "community" toys that many other little kids were handling during cold/flu season.
This past Friday, we went to my in-laws' house for a visit. My father-in-law has a good sized hobby farm, and Judith wanted to go see some of the animals. My father-in-law walked her around, showing them to her, and she tried petting some of them but couldn't get close enough to actually do it before they wandered off. We just made sure she washed her hands really well with soap and water before we had lunch, and I could see that she got really dirty while she was with her grandfather, but she also had a lot of fun. At least she didn't drink stagnant water out of a puddle like she did last year around this time.
I think what makes a lot of CF moms panic, at least initially, is the fact that some of the really nasty bugs our children can culture, like pseudomonas, live in soil and water. Trust me, it's something that I think about, and is the reason why we get Judith to wash her hands as soon as we can get her to a sink. But for us, it's not a hill we're going to die on, especially since she loves animals and loves to dig. So I don't want to keep her away from it, and want her to be able to enjoy something that's a pretty normal part of childhood. I feel the same way with splash parks/water parks and pools. Some of the only things we avoid are any bodies of stagnant water and hot tubs.
I also have to laugh at myself a bit, because I'm realizing how much I did put her in a bubble, mostly out of necessity, but there were those small little things that I now realize weren't worth panicking over. Sure, I still have days when I panic over something silly, and I would think that's normal for a lot of CF moms. I've been working with myself, though, to try to relax, because once she goes to school she's going to be doing things that I can't control, and is going to be exposed to way more than what I can control as well. We're certainly still proactive and do what we can to keep her as healthy as possible, but I also am realizing that we're rapidly getting to the age where we're going to have to start letting her get into things and letting certain things go because it is out of our control.
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