Although I refuse to acknowledge that Cystic Fibrosis runs our life I will quickly admit that it is very seriously A Monkey On Our Back. There are two very true things about living in a small space with CF. (I’m not quite willing to call a fifth-wheel a ‘tiny’ home.)

ONE: You have to keep up on the house.

TWO: You have to keep up on the treatments.

When you live in a small space you utilize every corner. Everything has a place and everything that isn’t being used needs to be in that place, otherwise it is in your way. If you drop crumbs, as we all do, they fall into every corner of your home. It doesn’t have to require an OCD level of mindfulness, but if you do not run your house it will run you. And, as I’ve said before, CF is unrelenting and doesn’t take days off, vacations, sick days, or holidays. That means that every day has hours of treatments and a ton of pills that simply cannot be missed. Because of these things everyday in our RV life, whether a school day or a weekend, has a huge list of regimented activities.

a boy and his black bunny
Boy loves Stellaluna and Miss Luna Bunny loves her Boy!

So, what does that look like?

I typically, or ideally, wake up a little before ‘The Boys.’ Even if it’s only half an hour before Andrew I use this time to straighten-up. Having come from a very seriously Tiny Home Class C Andrew is pretty trained to stay out of my way for those first minutes as I can put the house into some sort of a semblance of order. First I re-align anything that has been bunny-proofed for the night. Then there are two mandatory first morning chores and two negotiables. Luna-Bunny’s Litter box, hay, food, water, and fresh veggie kabab have to be done daily and this is always followed by either a quick sweep of the carpet with our rubber broom, or more often a vacuuming of the main room. I also take out the trash. Ideally I’ll take some time for exercise and possibly do computer work or studying. In Honduras I learned a phrase: “You make your mornings. Afternoons make themselves.” Working out very first thing seems to be best, as I can’t vacuum until everyone is awake, but that doesn’t always happen. Especially since I don’t always wake up before The Boys.

Cystic Fibrosis Pills
Staging pills for a meal; so they don’t get forgotten.

That being said, Nathan usually wakes around 10 am. He doesn’t have a specific waking time. He can pretty much sleep as long as he would like, and though we are working on a family bedtime of around 11pm he doesn’t officially have his own bedtime. When he wakes the first thing does is cuddle with Luna, then he gets himself some cereal, usually coco dino bites, with which he takes 4 enzymes, a multi vitamin, a probiotic, and the blue Trikafta pill. (We swapped the AM and PM doses of Trikafta to deal with nauseousness.) I sweep or vacuum now that everyone is awake, and Andrew makes his breakfast. Then I get Nathan set-up for his nebulized Pulmozyme treatment. It takes about 20 minutes. Although working out before is better, if ‘all the ducks align’ I can use breakfast time for the litter box and vacuuming, and then “pulmozyme time” (yes, it is okay to sing MC Hammer here…) for a short workout. Otherwise I use these few minutes mostly for chores as there are always things that need routine cleaning.

I know that sounds confusing. It’s not so much in practice, but it is very much an ever flexible dance to get everything done smoothly. As said, some chores just have to be done; basic cleaning and always the CF demands, but with some quick transitioning I might also manage to squeeze in some personal time. The real blessing to this all is the fact that we really can just go with the flow if the schedule all falls apart. After all, that is the whole reason for living a full time RV life, but I am always striving for some routine for school so I try to push the timeline along as smoothly as possible, since CF treatments will never be dropped… basically the Train is going to keep rolling whether you’ve made it on board or the track has even been cleared…. Chugga Chugga Woot Woot….

Stack of Clean Dishes on Towel
Strategically Placed Clean Dishes

As his neb nears an end I start to boil water to sterilize the cup and mask from this morning along with the one from the evening before. Again, timing is everything. I use the water from this boiling to wash the dishes and clean the stove while Nathan does his next treatment, his Afflo Vest, for 30 minutes. He gets screen-time privilege for these treatments, but only certain games that he won’t bug Daddy about, as Daddy is now working, and right in the same main room as everyone else. I also prep for lunch, which is rather funny, as it is only about an hour between Nathan’s breakfast and his lunch, but as ridiculous as that is, it is just a fact that he is always ready for lunch after treatment, and (as I learned in Africa) “hungry bellies have no ears,” so I make sure he is fed because homeschool is next most days of the week. Before he eats, Nathan puts the dishes away. (They have been strategically placed on his seat at the table, confidently forcing this chore to be mandatory.) He has 5 more enzymes and a second multi vitamin with lunch . “PHEW! The morning chores are done.”

It’s usually around 1pm at this point and if it is a school day we now begin homeschool. We have a schedule of 4 days for school followed by a day off, with Sundays always off. This doesn’t mean we always have 4 days in a row, as we may need to go to the next town for errands, have a clinic appointment, have a travel day, or some other event. On the ‘off days’ I try to take time to blog and work on the website. Andrew works or studies pretty aggressively from around 10am until 5pm nearly every day of the week. The blessing is that he is always right there with us.

Homeschool and CF Supplies on RV Shelf
The shelf under our TV has game systems, daily medication and neb supplies, as well as tubs with homeschool materials.

Nathan is a good student, and because I spent a year and a half working 6 days a week outside the home we really appreciate our time together now. He and I converse well and have good attitudes about school. He likes to start with music, and has been picking up the recorder quite nicely. We play for as long as it’s pleasant; usually about 20 minutes. Our other subjects include reading and discussing science and history/geography, doing some math work, and eventually hunkering down for his least favorite subjects; spelling and writing. (I always like to get the ‘yucky’ stuff done first, but Nathan likes working his way up to it as it allows him to prep for a good attitude before we jump in. I like that he is learning to self-regulate his temperament and I’m more than willing to follow his lead… as long as the spelling gets done, of-course.)

We are usually done with school work around 3 or 4 pm, depending on how diligent we are with the morning chores and school work. Nathan has some sort of snack (working on healthy ’rounded’ ones,) with 4 more pills. I have been working on keeping Nathan off screens until his evening treatment at 6pm, so this time can be used for outings, errands, house chores, reading or playing together, playing with other children in the RV park, swimming, or just screen time if I have work to do and Nathan has had a good attitude.

Homeschool Work in RV
We removed the couch in the livingroom and replaced it with banana chairs. Nathan and I do school work at this little folding table. It actually works quite well… if you don’t mind sitting 3 inches off the floor and feeling like a kid again.

As a family we only have one cell phone and one TV, but we also have two computer options. However, we only have 2 ‘internets.’ This list sounds like a lot of options for 3 people, but put into practice it means everyone sharing and coordinating usage. For work reasons Andrew always gets priority for the computer(s) and his choice of the internet that is the fastest at any given time. If it’s treatment time Nathan usually gets next choice, but there are times that I would like to stream something. We make it work just fine and have had pretty good luck with Verizon for both the phone and Mifi hotspots. Our house is a bit like a Tretris game, though. If both computers are in use the table has to be managed a certain way, and we no longer have a couch, so Nathan and I use two of our three banana chairs and a small folding table for school, snacks, and other activities. There is also a very-in-the-way-but-useful fold-out counter top. These things all get pulled out and stacked away as needed or when not in use.

Andrew is pretty darn routine, and at 5 pm he is ready for some personal screen time. This is, most often, learning some other computer skill for personal use or a game he wants to challenge through. Then, typically 6 pm (or maybe by 7 pm) it is time for Nathan’s evening treatment. He usually gets his pick of a screen/internet choice, but we really work as a family to make sure that everyone can enjoy the time off from their work pleasantly. We’ve all been sharing the screen time since Nathan’s birth, so we’re pretty obliging and flexible with each other.

Nebulizer Equipment
The Compressor lives beside the TV and the hoses and used neb cups get hung-up. This keeps everything a little visually clean, but also bunny-proofs all that soft ‘chewable’ rubber. (Note the split tubing on ALL of our hoses and wires around the house.)

The evening nebulized treatment consists of a mixed solution of 7% saline and albuterol. This one takes longer than the morning neb. He then does his vest again for 30 minutes. When he starts this treatment session it signals the time to make dinner. Either Andrew or I may be the one to make dinner. We both like to cook and we’re kind of an odd family in that there are usually 2 different meals going on for dinner. Most often I make a meal either for all three of us, or just for Nathan and I if it’s seafood, and Andrew nibbles on a bit of the main meal and supplements it with his own favorites. I hate to say pizza and/or hamburgers…. but yeah, homemade pizza and hamburgers (or their left-overs) pretty much live on our table everyday. We usually eat around 8pm. Nathan takes 6 enzyme capsules and the two orange Tikafta pills with dinner. We eat together at the table, even if we are all eating different things, and watch something together as a family. Nathan has now taken all of his pills and done all of his medical treatments for the day. Everyone is now done with chores for the day.

We all enjoy our own entertainment for the night from this point on; sharing the Common Room. Sometimes it’s Andrew and I watching something together or perhaps having some ridiculous in-depth conversation. Sometimes I watch my own thing and Andrew his own. Nathan usually plays the video game that he has been waiting for all day, but he is always listening in on what we talking about or watching. He’s like a radar; he picks-up everything. Sometimes we all play a game together. Eventually someone is tired and we have been trying to all go to bed as a family. The very last thing we do is bunny-proof for the night.

As mentioned, our days are pretty regimented. Every day follows Nathan’s Pattern: breakfast (with pills), treatment, lunch (with pills), ________, snack (with pills), treatment, dinner (with pills), ________, bed. I call it “Nathan’s Pattern” but really it’s CF’s Pattern. Those _________’s in there offer reprieve, but that Monkey is real! We are very fortunate to be in a place that means we don’t also have to squeeze these obligations around a standard American work/school day, but this truly is why we made the decision we did to live our life in the manner which we do. As unrelenting as it is, I have never felt more blessed to be in charge of all of these responsibilities. Taking care of Nathan, our home, and Andrew fills me with life-fulfilling purpose. I am so glad that we have finally gotten out from under the pressure of the American Rat Race, and though it took a long time to get here it has been worth every struggle to finally be here.

I’ve decided, at this time, not to make another full article specific to traveling with CF, as we do have several blogs published that already touch on the subject. Instead I’ve added a few more pictures below to flush out our ‘CF Existence’ in the new RV:

Nathan’s first 7 years of treatment were all conducted in Anchorage. When we left we didn’t quite have a final plan for our travels, so I asked for a paper copy of every clinic visit. I have since added each one. I like to look very precisely at his lung function numbers from one clinic to the next and this allows me to do so at any time. No matter where we are or what emergency we run into the information is right in hand without having to run through computer networks and permission protocols. This also includes, mail order RX info, medicaid applications, acceptance letters, and other related items. It’s a little ratty at this point, but Hey! It’s ALL there!
Every month Nathan and I refill the daily pill boxes. It takes about 30 minutes There are 4 compartments each day, (Breakfast, Lunch, Dinner, and Snack) and at this point we are pretty much out of room for any more pills. The Trikafta pills get added daily to ensure they don’t loose their potency over the course of the month.
Cystic Fibrosis Pills in A Drawer
I won’t show you my whole drawer, but I like to refer to our emergency stash of Enzymes as ‘The Terracotta Warriors’ all lined up and ready when needed.
Pulmozyme, of course, needs to be stored in the fridge. We don’t have an official ‘mini fridge’ but our smaller RV fridge still gets VERY cramped just with food alone, nevertheless adding even one or two boxes of medicine. But, alas, with CF you prioritize what you must first.
CF Supplies
There is always more CF ‘Junk.’ This tub in a cupboard has extra neb supplies and some open bottles to use next.
CF treatment supplies for traveling
The other side of the cupboard has Treatment Supplies for Traveling: spare/old compressor, battery compressor, home spirometer (Thank You CF Foundation!), European plug kettle for sterilizing…

One comment on “A Typical/Perfect Day in the Life…. A Full Time RV Family Juggling Life, Homeschool, and Cystic Fibrosis”

Janet says:

I enjoyed reading about your day. So thankful that God has equipped you and Andrew to care for your precious son. I will be praying for you as the Lord brings you to my mind.

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