It’s just the worst…

“Look, Mom. I did Nora’s hair!”

I think I briefly mentioned before that Morgan and I moved. (See what I did there? Just breezed right past the depth and gravity of a certain recent post. The situation has been acknowledged and now we can move on. Which seems to be a theme these days… moving on.) Anyway, we moved into a little apartment seven miles north of the tiny town I’ve been living in since my family came to Utah 20 years ago.

Rant: Isn’t moving the worst? All the boxes and packing and dust and deciding who gets what and what goes where and OH MY GOSH, HOW DID I AQUIRE THIS MUCH JUNK?!? Ugh.

So, seven miles away. You might not think that seven miles would make that much difference, but guys… this is just crazy. I mean, we’ve got a Walmart and a stoplight and everything! (Do you hear that sarcasm?) I joke, but it’s actually a nice place to be. My brother and his family live just a few blocks away, and we’re still close enough that Morgan and Adam can see each other whenever they’d like. Morgan thinks that living in a new town is pretty awesome, although she keeps asking why we didn’t move to Salt Lake City or “somewhere fun” like that. Me? I’m just happy that when I run out of Starburst jelly beans, the grocery store is now close enough that I can justify going back out with the sole purpose of getting another bag. When I lived farther away I never would have made an extra 25 minute round trip for jelly beans. Except for that one time…

Don’t judge. Sometimes a girl just needs jelly beans.

We’ve been living here for a little over a month now and as much as I’d love to say that we’re all settled in and loving it here, the truth is that we’re still living in bit of a disaster area. (I need to correct myself; I said that moving is the worst but actually, unpacking is the worst!) There are unpacked boxes lining the wall of my bedroom, occasionally spilling into the kitchen and living room when I attempt to locate something that is still packed away. It’s gotten to the point that I’m considering throwing blankets over the piles of crap and telling people that they’re one of a kind pieces from a new line of furniture I created. “I know it feels like you’re sitting on a stack of cardboard boxes, but it’s actually this awesome new kind of couch. Trust me, they’re all the rage.”

One of the most difficult things to keep up on during this whole moving process has been laundry. I feel like I can’t unpack everything until all the laundry is folded and put away, but then I have a hard time putting the laundry away because there are boxes and all kinds of other random things cluttering up my space. I no longer have a laundry room, or even my own washer and dryer. I’m now using coin operated machines in a community laundry room. For this reason (and because, let’s face it, doing laundry sucks) I try to wait and do all our laundry on certain days of the week. I don’t think people without children will understand this, but having a kid doesn’t just double the amount of laundry in the house, it increases it exponentially. Children have this need (at least my child does) to change their clothes several times a day. And not only are they using three pairs of clothing throughout the day, but when they shed them into the hamper something magical happens and the dirty clothes actually breed and multiply until before you know it, there are 18 dirty shirts and several so-dirty-they’re-hard-to-identify articles of clothing that have miraculously appeared within a 72 hour period of time. Laundry? It’s the worst, for sure.

There have been times that the unpacking has been almost done, only a couple boxes left. But it seems like every time I go to the house for any reason, I end up bringing another entire load of stuff back to the apartment and the process starts all over again. More boxes, more de-junking to do, more things to organize and put away. But that stuff ends up getting pushed off by more pressing things like taking Morgan to school, going for walks and making trips to the park, appointments with doctors and attorneys and, ya know, super important things like catching up on The Bachelor.

Speaking of The Bachelor, can we all just agree that Juan Pablo is actually the worst? Worse than laundry even. The worst of the worst!

I’m proud to say that a good portion of the past couple days was spent cleaning and putting more things away, and I feel like I made a considerable dent in the mess. While going through one of the boxes before dinner last night, I came across Morgan’s zebra pillow pet – a gift she got two Christmases ago when she consistently answered the same way each time she was asked what she wanted Santa to bring her. “Hulk hands and a zebra pillow pet.”

“Morgan,” I called out as I pulled it from the box. “Look what I found.”

“My zebra pillow pet! Thanks, Mom! I’ve been looking for this for like, fifteen years!” She’s not dramatic at all.

And as I was getting her tucked into bed last night I noticed that her zebra and two stuffed bears were also wearing pajamas. So maybe she isn’t entirely to blame for the laundry problem. It’s been those darn bears all along!

Something I’ve had a lot of time to do this past month is think. To reflect on the past and begin making plans for the future. Looking at our surroundings, realizing that this will be the scenery of the memories we create for the next several months of our life, it’s all a little bittersweet. This apartment wouldn’t have been my first choice but for many reasons, this is where we ended up. The neighbors are a little… well, that’s a subject worthy of a post in and of itself. I have a tiny kitchen and an even smaller bathroom. We don’t have a yard anymore – something that we’re having an incredibly hard time adjusting to. But despite all the little annoyances and inconveniences (did I mention the roosters in the vacant field behind my apartment complex that start crowing at 6:45 each morning?) this place is starting to feel like home. It’s ours, and more and more I’m becoming confident that the memories we make here are going to be pretty darn awesome.

And that feeling? It’s certainly not the worst thing ever.

Meeting sweet Baby Charlie (my friend Holly’s daughter) for the first
time when they came to see the apartment. We had quite a good chat, she and I.

Where do you draw the line?

I’ve had some pretty heavy thoughts running around in my head for a couple days now — like a hamster running around in a rusty wheel, driving me insane with the incessant squeaking. I’ve been putting off writing about it, hoping the words would magically come together and manifest themselves on my computer screen. Needless to say, that hasn’t happened and the wheel is still turning. It’s time to kill the hamster.


Some recent discussion in the CF community has really got me thinking: what does it really mean to be positive? Is it possible to be realistic without being negative? Is one person’s undying optimism another person’s denial? Where do you draw the line?

Or does it always have to be so black and white?
The word “positivity” gets thrown around a lot, whether in the context of CF life or life in general. We’re supposed to remain positive in the face of adversity, always wear a smile and not let our circumstances get us down. But just like each case of cystic fibrosis is very different, so are the lives of people living with it. So it stands to reason that each person’s interpretation of “positivity” is just as unique as their own story.

I’m generally a pretty positive person. More so than a lot of people I know, actually. I can put a positive spin on almost any situation, but I can also admit when something just plain sucks. And sometimes things do, sometimes they really do. I try to stay positive, focus on the blessings I’ve been given, and make an extra effort to appreciate all the beauty in my life. I try like crazy to push all the dark, negative thoughts out of my mind. But sometimes, all that trying is in vain and sometimes it JUST DOESN’T WORK. I get overwhelmed and tired of it all. I focus on the negative and stand back helplessly watching my fears about the future creep in and make themselves at home. Sometimes I do exactly what all those Eternal Optimists and Positivity Pushers warn against.

And do you what I do once I realize I’ve reached that point? I allow myself to feel that way. I don’t get upset that I’ve lost my grip on those positive thoughts. I don’t chide myself for being discouraged. I curl up in bed and cry for a while. I admit just how frustrated and scared I really am. I let my more emotional self take the helm and I feel whatever I need to feel for a while. My feelings are just that — mine! I refuse to let anyone make me feel ashamed of them. I believe that when I allow myself those moments, after they have passed, I really do feel better. I’m able to reevaluate things with a clearer head and carry on with an awesome attitude again. I think that it’s healthy — no, NECESSARY — to let ourselves visit “the dark side” every now and then. The trick is not to let ourselves dwell there too long.

The psychological aspects of a chronic illness (whatever it may be) are just as real as the physical ones. They may not be as visible or easily recognizable, but they are very present. I think it’s important to understand and accept that. We need to be able to have those feelings and allow others to have them without judging or being judged for it. The current median predicted age of survival is 37 years. In other words, half of the patients currently on the CF registry are expected to live past 37 years. Half are expected to die before reaching that mark… half! That’s not okay! My own sister died at the age of 14. She and my parents did all that they possibly could do, and she still died. I can do everything in my power to try to beat those odds, but the truth of the matter is that CF is a ruthless killer and I am not in complete control. I can’t just sweep those thoughts under the rug. It’s great to be positive and look at the glass half-full, but it’s also okay to admit that it’s scary.

“Ignore the statistics,” some say. “They’ll just get you down and they’re not an accurate prediction of how your story will play out.” While those statements (and others similar to them) are true, I REFUSE to ignore the statistics. I prefer to use them to fuel my fire. I want to be in the demographic that lives to 37… then 57… then 77, and beyond! Looking at the stats and acknowledging that I could easily fall into the other half makes me THAT much more motivated to kick CF’s ass. Fully digesting the scary reality of my situation allows me to strategize, to plan for the worst and work my up from there. If you call that negativity, then so be it.

So, back to the original question, where do you draw the line? My answer: I don’t think we have to. I don’t believe it’s a matter of black or white, realistic or positive. Rather, I think that life is a thousand shades of gray. Pick and choose what works for you. Change it up as you need to. And never let anyone tell you that what you’re feeling is wrong.