Everyday Life

Sometimes it's just hard. The seemingly little things you would never think about until you have to face them. Things that most people take for granted in everyday life. Like playing outside with your kids. When just one of us is home with all three kids, we have to weigh the options. Take the older two outside to play, and risk Waverly getting very sick from it from breathing in the pollen (and having to miss breathing treatments since they are so frequent), or make the older two stay inside the whole time, watching the beautiful day from the window? We can never do family errands together, unless we have a babysitter for Waverly. Occasionally if we are out and have her with us, we may make one stop, but that is very rare, because it is so much to get her in and out and it's hard on her to be out for very long. So, again when we have no nurse at home with Waverly, if Johnny and I want to go check something out together, we have to wait until someone is available to watch her. You can guess how many people are able to help us out with her. Now that it's nice out, there are lots of things happening in the evenings. Even simple things like neighbors outside hanging out and kids playing until later. The nurse leaves at 4:30, so we are left to decide which one of us stays in with Waverly and which one goes out with the kids. No more whole-family time outside until late in the summer evening. Even if we did decide to risk it, she needs to eat via feeding pump around 6:00 and breathing treatments start around 7:00. We can move that back a bit but it also moves back the rest of her nighttime care like cathing, etc. It just gets so complicated.

Family vacation. We both felt it best not to try to take Waverly this year. And it breaks our heart that our "family" vacation won't be our whole family. And what's more, like most things we seem to do now, it will be split. Johnny will go for the first half, then he'll come back, and I'll go for the second half. Because even though we have daytime nursing care, we don't have 24/7 nursing, so we can't leave her with someone and both be at the beach together. We won't be able to enjoy together the sound of our kids playing in the ocean or building a sand castle. And I worry about them, not seeing us together with them, not having their sister with them.

Even now, whenever we go somewhere, they usually ask, "Who's staying with Waverly?" because they know she doesn't go out often. I don't want them to disassociate her with our family. Not that they do, but they just automatically assume she will stay home from everything since she usually does. It is so hard to know what the right thing to do is.

Park trips. Church softball games. Gardening and outside work. Grocery store trips. All of these become big decisions as to what we will do, split up again or risk taking her out. Contribute to the separation or potentially put her health in jeopardy. It's just hard. And although I know some people have it even worse, and have had to face these questions for much longer, and have more to face than even I know or realize, it still just stinks. But it does make those family outings that much more special. The kids love it. And even though we are nervous about how Waverly will react (will she seize from overstimulation, cry all night like she often does from exhaustion from being out, get pneumonia again from exposure to who-knows-what), we try to soak up and treasure those sweet moments. So even if it just seems like a routine morning at church, or a family dinner out, or a trip to the park, if you see us all together, realize it is a very rare and special moment for our family. Turning ordinary times into extraordinary.