Back in 2010 Andrew and I decided that after 7 years of marriage we were ready to start our family. God blessed us with a very quick conception; within 5 days of ‘trying’ we conceived. I had anticipated getting pregnant and had spent the previous year working out and weight training. Needless to say I had a very fit pregnancy. At 7 months pregnant I was still able to do two pull-ups. That was about the time I decided to finally quit hitting the gym. The week before I gave birth my old Ford flooded fiercely. Pregnant or not I did what I had to do and changed the very fuel laden engine oil right were the truck sat: in the Anchorage airport employee parking lot, in the dark, in the wind, in February. A few days later a frequent flyer saw me sitting in a chair behind the ticket counter. “Are you alright? I’ve never seen you sit before.” “I’m fine,” I smiled, “just a little pregnant.” Two days before labor I participated in the Fur Rondy Fur Bikini Contest. I was the first pregnant girl to ever compete. I won my own $200 consolation prize and was rewarded with lots of praise from women in the crowd over my ‘bravery’ to go on stage. It was an absolutely perfect pregnancy.
I started feeling ‘off’ on Sunday afternoon. By 4 am the contractions were waking me from my sleep every ten minutes. I finally woke Andrew up and told him I was definitely in labor, but to go back to sleep, as there was nothing he could do for me and would need to be awake for me in the morning. I spent the rest of the night quietly laboring alone. For whatever reason we waiting until the mid-wife opened on Monday morning at 9am before going in. I was well under control, but Baby, a still unnamed boy at this point, hadn’t moved since the evening before, very unusual for him, and I was more than a little concerned. I had eaten oranges and gotten in the bathtub, rapping on the walls to see if he would be startled into moving. Finally in the truck I was able to actually time my contractions. 5 minutes apart. We were right on time.
Arriving at the midwife office I was surprised to be greeted with praise and congrats for my Bikini Contest, which I politely accepted, but that was about as long as I could hold it and all but burst into tears, “Can I please just hear my baby’s heartbeat?” I was taken to an exam room and sure enough he was alive and well. “Okay,” I told myself, “Okay. We’re okay.” For as much research as I had done about the birthing process, it was only then that I was informed that a baby ‘nestles down’ into the birth canal when they are ready to go and don’t do a lot of moving. “That would have been nice to know!” I had been so worried and for no reason. They took my blood pressure. I don’t know what it was but she asked, “Do you workout?” It must have been surprisingly steady.
The mid-wife center had a multi-room birthing apartment. I had wanted a water birth, but that plan didn’t align. Instead I spend an hour in the shower, and used up ALL the hot water. They chuckled that Andrew was reading out names from a baby book while I was laboring. I remember the point at which I told Andrew, “Okay, I think I’m going to start crying now.” Exhausted from being up all night I laid in the bed and slept between contractions. I was very foggy, but Andrew was by my side. I knew he couldn’t do anything for me but I was SO happy to just have him sitting aside me watching over my safely. I later realized that “Just Sit By Me” was to become a reoccurring theme in our life.
Soon enough my water broke. It was like a water balloon bursting. Bloosh! Just like that I snapped out of the very heavy fog, “Andrew, what color is it?” “Green-ish,” he replied. I knew that could be an issue, but my body was ready. The baby was coming now! And I was right to be concerned. The mid-wife informed me that under these circumstances they would normally send the birthing mother up the road to the hospital, but she thought I would probably just end up giving birth in the ambulance. And she was right. I would not have made the 15 minute ride.
Most of us know the ‘everybody poops’ part of birth from lamaze class, so that part came and went. I think I had been holding it in, afraid pushing for that earlier might cause me to push the baby or something. Those silly things.
I remember being afraid for a minute. “I don’t know how to do this!” The mid-wife looked me in the eye and calmly said, “Yes, you do.” I think of that when that exact line comes up so often in movie birthing scenes. The real pushing started. I didn’t count them but it wasn’t very many. The one thing I did count was the crowning. No one told me you’re going to crown more than once! That first crowning was the most excruciating thing I had ever felt in my life!
Andrew saw the top of his head. I thought to myself, “Phew! Got that over with! …. wait what?! The baby goes back in and I have to do that again?!!” But what’s a girl to do. She does it again. I know somewhere during those pushes I shouted “Shit!” once. It was probably then. Andrew still claims he never heard it.
We walked into the midwife office at about 9:15am. Nathan was born at 11:47am, 6 pounds, 8 ounces, 20.5 inches. We did it. He was here. He was healthy. The placenta was healthy. I didn’t tear very much. We were all going to be just fine.
I slept for about an hour then got up and got dressed. “Okay, are we ready to go?” “Oh, no Honey, you have to stay for at least 3 hours before we can release you to go home. And we need to see that you’ve eaten something.” Oh yeah, that’s right. I knew that. We had left in such a hurry that we didn’t stop to get food on the way. My mother and sister-in-law had been in the kitchen of the apartment while I gave birth. She left and returned with one of those big sub sandwiches from Fred Meyer/Kroger. My own mother an step-dad, who could just… not… drive… fast… enough with an hour and half notice from a 2-hour distance, arrived to meet the first Alaskan born grandchild; just 30 minutes old. Three hours after birth we drove our, still unnamed, baby boy home.
Births are hard. I don’t care who you are, how fit, and smoothly it goes, births are hard. That being said, I can truthfully say that I had a PERFECT birth. I can almost call it wonderful or even pleasant…. except for that second crowing part…. I could have done without that. I had been blessed with a perfect conception, a perfect pregnancy, and a perfect birth. Hmmm…. perhaps I’ve met my quota for perfect?
Newborn and Diagnosis
Our baby was born on February 28th, 2011. Three days later we finally decided on the name Nathaniel, “Gift of God;” Nathan for short. My mother stayed with us for several days and I was glad for the time to rest. Nathan slept on her chest on the couch those first nights. He was a little cruddy, probably from pushing though the meconium filled amniotic fluid, but he was doing fine. The mid-wife came to the apartment the next day and collected a sample from his heel for the newborn screening.
Everything was beautiful for two weeks. Nathan ate. Andrew was home to hold him. All of the family in the Anchorage area got to meet the baby. I nursed. Nathan slept well… enough anyway. Soon enough I was realizing that baby was going to need more than just his physical needs met. He also needed to held and communicated with for pure pleasure. He was awake more and life as a Mommy was evolving along. Then week three hit.
First it was a failed hearing test. We began preparing ourselves for a hard-of-hearing child that would never grow up to be a cop or in the military. “Okay. We can do this.” We took it in stride. Next, Nathan would nurse but not for very long. He’d fall asleep, but then he’d wake up shortly later crying for milk. I was stuck with this terrible pattern of near constant nursing demands from a baby that also wouldn’t sleep very long. What was I doing wrong?
I took him to the lactation specialist at the midwifery. We found that he was still barely touching the 7 pound mark. He looked like a skinny old man. I was producing milk fine, and he latched fine. Those were not the problem so we moved on to trying to keep him awake while he nursed. “Strip him down so he’s a little cool and try tickling his feet if he’s drifting off.” I took him home and tried these. No change. By this time I was confining myself to the bed in tears. Andrew had never seen me like this. He literally asked my why I was taking it so personally that Nathan wasn’t nursing well. Yeah, I was. What was Idoing wrong?!!
Back to the specialist. This time we talked about bigger possibilities. His first screening tests had come back with a positive for some ‘thing.’ It was most likely a false positive, but the midwives asked if my baby tasted salty. I didn’t know! What do newborn babies normally taste like? This was my first baby! So I spend the next whole week licking my baby. True story. Never felt like he was salty.
At some point I ‘gave in.’ After getting through the ‘crying about it’ and then getting through the ‘angry about it,’ I quietly slipped out of the house at 7am and walked to the store very solemnly. It was like some sort of pivotal scene in a romantic tradgity where the mother had completely failed and just gave-in to the fact that she was completely crappy and just couldn’t do it right. I bought formula. Yeah. I was one of those moms now. The kind that are too busy or self centered to take the effort to nurse their baby. The kind of mom that puts her career first and is proud to have nursed the first whole three weeks of their maternity leave before handing their baby off to some stranger with a tub of formula….. yeah. Pretty harsh. But it was how I was feeling. Why was this happening to me? Why couldn’t I get this right? This is not what I had planned for my life as a mommy.
One bonus: Now Andrew was able to feed Nathan and he loved that privilege. That part made me happy. We noticed something else, too. If Nathan nursed 10 times a day he had exactly 10 messy nappies to go with it. I didn’t know anything about these things. I just knew that every time he ate he produced a messy, yeasty, poop. Then the phone call came. They wanted us to see a specialist for the possibility that Nathan had something call Cystic Fibrosis. We had never heard of it. The appointment was Friday March 28th. Nathan was 28 days old.
If you are reading this lengthy story I am going to assume that you, your child, or a loved one has CF. I don’t know if you were part of the initial conversation about what that entails and what to expect for your child, but I’m sure you can assume that it would be A LOT to be ‘dumped’ with in a single sitting. I’m not going to talk about the details of the conversation, but I will summarize the experience. You are looking at your tiny newborn sleeping in it’s car seat. You are listening as extremely intently as possible to every work the soft spoken septuagenarian doctor is telling you. You are filled with confusion, fear, love, compassion. You are worried about how your spouse, sitting firmly next to you, is taking all of this in. You are a mother who feels like she is watching her child’s life crumble before her literally like a building being demolished. Rubble and dust. But then also hope. Somehow there was hope in the story. A certain kind of “if you do it all right, (and get lucky,) it will be okay.” The nurse that day reflected back on the experience later and stated, “I couldn’t figure out why you [two] weren’t crying.” Why would I? It’s not like it would change anything. It would simply get in the way of taking in all of that much needed information. And there was SO much information.
We left with a bottle of capsules and some instructions for how to administer the tiny pellets inside them. About 4. I think Nathan started with a test dose of about 4 teeny-tiny pellets on the a dab of applesauce before each nursing… and now also bottle feedings. Immediately. IMMEDIATELY his stools changed. That night. We desperately wanted it to be a false positive, but at that point there was very little doubt in my mind that it would be.
Some time later that week we took him in for a sweat test. That was the ‘definitive’ answer. It wasn’t even a borderline amount. Nathan’s sweat was 4 times more salty than your average person.
With the addition of those enzymes Nathan began to put on weight. It would amount to a full poundevery week, for 12 straight weeks. And then it hit me, some time later, when I was diving head first into every facet of CF that I could manage to cram into my foggy new-mom brain. Nathan had been too tired to nurse. He had no energy because he was not absorbing the nutrients. It was Failure To Thrive. He was thin and tired because he was starving. My baby had been starving. I was watching my baby starve and not only was I not seeing it, I was so self absorbed about ‘the nursing thing,’ the you-know, “Why are you taking this nursing thing so personally?” situation. The “what am I doing wrong?” and all the me, me, me’s. I sobbed. I absolutely sobbed. To this day I can still barely tell the story without breaking into muttery tears. Along with the “Can I please just hear my baby’s heart beat?” That one gets me, too.
I’m not much of a crier. As I said before, what does it help? I’ve learned that I’m more of a ‘Robot Mom.’ And for CF that is a very good thing. There are a lot of tasks that you just have to robot through. But let me tell you, and I’m sure you know if you are anywhere close to a CFer….. there were a LOT of tears over the next year and years to follow. They are less now, but as you also probably know, even a good CF story still has an ending somewhere, and even with hope that is lamenting to manage emotionally.
I’ll end this section a little softer, with the wonderful [blurry] gem of a photo below: Andrew shouted from around the corner, “Oh man! Can you get me a towel?” I duck around and grin, “Sure, Honey… right after I get the camera!”
ANY time Nathan would cry for a while-there Andrew would suggest, “I think he’s hungry.” Andrew was excited to get to feed him and I’m sure that quite often Nathan was hungry, but I think he finally got to a point where he was getting good nutrition, and I can only assume that he might not have actually been that hungry before this particular feeding.
“What kind of CF did we get?”
I don’t know how I didn’t or couldn’t call Nathan’s skin was salty. There is no question. It’s salty. And after some blood tests we knew (officially on paper) that he was pancreatic insufficient and had the most common genetic mutation ΔF508 (a Class II mutation where the CFTR has a ‘folding problem’) but also G542X (a Class 1 mutation, AKA Stop or Nonsense mutation in which the CFTR protein isn’t completed and doesn’t function at all). He was also growing Serratia in his lungs.
At 5 weeks old Nathan was given a life expectancy of 37 years.
Though we didn’t cry at the doctor’s office, there were some ‘Big Cries’ at home. Andrew and I both. Just crying with not much to say. Just letting all those feelings out. They were Big Cries together. I think they were weekly at first, but then monthly. Eventually we would make it six months or so between Big Cries. In between we had a baby to love-on and the task of learning how to care for not only a newborn human, but one with Cystic Fibrosis.
We got the little blue clappers and learned how to do chest percussions. The doctor put Nathan on Tobramyson to kill the water born bacteria we’d found in his lungs, and we got rid of the water turtles I’d been handling daily; quite obviously the culprit. They had never given Tobi to a child that young before. By the time we got it dosed right, along with routine newborn vaccines, Nathan got stuck with a needle 14 times in 10 days. Then the Tobi made him hoarse so we added an albuterol inhaler along with a steroid inhaler to help him along. Nathan didn’t crack his first smile until he was 10 weeks old. I think it was because he was too busy either eating, sleeping, or crying, and there was simply no time left for smiling.
I was busy too. I began pumping. I was told to nurse one feeding and bottle feed the next so I could pump. Something about “otherwise it will be like having twins.” Nope. I nursed him any time he asked then I’d top him off with a bottle. The next hour I would pump. Nathan was off the formula within a few weeks. (I never finished that abhorred tub of formula.) I did, however, ended up with a pattern that lasted well into the year of either nursing, pumping, performing a treatment, changing a diaper, or putting Nathan down for a nap every twenty minutes. I napped when he napped. I had to. He nursed every 3 hours at night for the first 4 months. I thought I was going to DIE! When he finally lengthened it to 4 hours I felt like Sleeping Beauty! I’m going to make it!
We kicked the Serratia within a couple months and Nathan began meeting all of the usual milestones. Oh, and that hearing test? It was a false failure. He passed with flying colors the next time. Just a preemie-ish thing, common for babies born 2 weeks early. We were trucking along.
..But I was dealing with something under the surface. Something very tough. We had decided, with Nathan’s diagnosis, not to have any more children. We didn’t want to risk Nathan potentially making a younger sibling sicker than they would already be if they were born with CF also. It was a hard decision. I had always wanted 3 kids…. or even more. My Big Cries were not only about CF but a very serious lamenting for the children I would never have. Pregnant bellies and newborn babies would set me off. Even my brother was having more children. It hurt. It was a heart wrenching sadness that cut me to my soul. I know I was blessed to even have a child, more than so many other un-mothered woman, but your heart feels what it does. I was surprised by it, and in no way able to suppress it.
(Those Big Cries lasted for YEARS. …but with time things heal. I think the last Big Cry (and it was a BIG one) was in 2018. It took 7 years to [mostly] reconcile but I, somehow, began to turn my angry jealousy toward those bellies and those moms with newborns into Muditā. I was feeling a newfound pleasure in seeing that God had blessed those women and I could finally be joyful for them and with them.)
Five Babies Later…
I hate to move quickly through the next years, but we all know how fast those first years go by. Nathan was a beautiful child. He had long blond hair that whisped like Farrah Facet, and a perfect, round, sweet face. He could wear a green camo shirt that said ‘Boys Play in Mud’ and I would still get complimented on my beautiful daughter. And he was so happy. My grandmother said she had never met a child that smiled so much. I was filled with joy, too. Being Nathan’s Mommy gave me a purpose in life that I hadn’t known I was lacking. Over the next 7 years I would become pleasantly fat and happy. (AKA – No longer spending 20 hours a week on myself at the gym.)
One particularly fun piece of this period was Nathan learning sign language. Unrelated to the deafness scare, I had decided before he was born that I wanted to use sign language with my child[ren,] and it was incredibly successful! Nathan could eventually sign 250 words; expressing himself and concepts way beyond what he could speak. The only, and quite humorous downfall was that his Church Nursery Care-Givers couldn’t understand a word he flip-flapped with his hands. I know now how much Nathan loves to talk and I think offering him that form of expression was probably really good for his development of person. We even dabbled in a few Deaf Community activities, but we don’t sign now. Maybe some day we’ll pick it up again.
After Nathan was born, Andrew stayed home for 3 months of maternity leave, then he went back to finish an 11th year at that giant three-letter conglomerate shipping company at the Anchorage airport; a job we no longer talk about. We had been talking pretty seriously about building a homestead in Wasilla, so he, instead, picked up a carpentry job to learn how to frame.
At about this time, now 20 months old, Nathan grew Pseudomonas for the first time. I called my step-dad to share the news. We wept. I wept a lot for a while. I felt like it was the beginning of the end. I knew P.A. was a big ticket Ugly Bug and that if it colonized we would be doomed to a lifetime of hospital tune-ups. We did Tobi… again. And the pseudo showed up in cultures after that… again. But a few rounds later and we managed to kick it. “Okay. We’re going to be okay. We got this.”
Some point shortly after this Nathan and I visited family in Homer. My aunt had 5 children, all spaced apart by many years. She she gave me some advice, “I’ve had a baby in diapers for nearly 20 years. Childhood will be in our home for decades. You only have one child and Childhood will only be in your home for a short period, then it’s gone. Do everything you ever desire with this childhood before it’s over.” And I realized at that moment, that I already only had about 15 years or real Childhood left.
By the time he was two and a half being away from Nathan was taking it’s toll. It was more than Andrew could take. I was already planning to open a daycare in our home and Andrew decided we could run it together. But this is not Andrew and I’s story. (Which is why I linked our versions of our travel story in the sentences above.)
Though quite good at daycare, the whole reason for it was Nathan. We both wanted to be home with him and he would benefit from having other children around…. since we had decided not to have more of our own. It was a home filled with babies, toddlers, preschoolers, and school-aged kids, all mixed together for the next five years. Some kids were biological, and some were foster of either ourselves or our daycare families. For one solid year Nathan had a foster sister. When we opened he started out as one of the younger ones in the group, but he was 7 by the time we closed our doors. When it was all said and done I had raised Nathan and 4 other babies out of diapers. It was a crazy thought. “Five babies?!” In it’s own off way I had been blessed with raising five babies, and had been dwelling in a home absolutely filled to the brim with beautiful Childhood.
CF Monkey on Your Back
Now, I’m no Dooms-Dayer but there are some precautions a mother simply must take. It’s pretty grave to realize that if your child can’t get enzymes for any reason they will be committed to a fat free, low protein, high carb diet for the rest of their life, so from the very beginning I have been stashing medicine. Even if it was just a few extra capsules a month. (When we began to think about major changes to our life style that ‘stash’ was going to become very important.)
Nathan had never really had bad Pulmonary Function Tests. As he grew his lungs grew and his numbers got bigger. He started doing PFTs at age 4 and was always very good at performing the test. Nathan dealt more with basic CF Tummy Troubles, with extra potty time in the morning once every week or two, and he very obviously had Sinusitis that made him clear his throat a lot. He would get ear infections once or twice a year, and he’d pop a fever, take a nap, and then throw-up about once a year. But what child doesn’t? To be honest, outside of all the treatments, doctor visits, and routine lab tests, Nathan was having a pretty typical childhood. Well as much as one could have under the unusual life circumstances we had chosen, but I’ll talk more about that later.
For the first two and a half years I had done all of the CPT treatments, but with both of us home running the daycare, we could share the responsibility. Andrew did the mornings and I did the evenings, now with the bigger peachy colored clappers. The other kids were there all the while. Let me tell you, we had the coolest doctor box for dress-up! Children of all ages in our care would use old clappers on baby-dolls or each other. There were nose pinchers and blow disks from clinic PFTs, and old arm cuffs from sphygmomanometers. There were spacers and empty inhalers, and, of course, a stethoscope, (glued to the open position to not allow kids to harm each other’s ears.) We even had Nathan’s cut-off cast from when he broke his arm at age 4.
Age 4 was also when he started the first daily nebulizer treatments. Pulmozyme. He had developed a bit of a persistant cough and it was decided that it was just CF junk. I asked Dr. Roberts what age he usually started kids on pulmozyme. He sighed and answered, “As soon as I can convince parents to add it to the routine.” In some ways I was glad for a medicine that did indeed help, as the cough went away quickly, but again it felt like the beginning of the end. I had lived 27 years with no CF treatments. Nathan would never know anything else. I knew, as I solemnly placed that mask on his face the first time, he would be doing thisevery single day for the rest of his life. But he was a good sport. To be honest he has always been really good about treatments. We are certainly blessed in that way. (Though I hear the teenage years change everything!)
Eventually, when we had done manual CPT with those rubber clappers, 30 minutes in the morning, 30 minutes in the evening, for seven years, our elbows and wrists had had enough. We were both dealing with inflammation and Tennis Elbow. It was finally time for a Vest. We tested the Afflo vest for 30 days with ‘before’ and ‘after’ PFTs. There were no negative changes so we ran with it. We wanted the battery vest for very specific reasons.
Doing treatments in front of other kids was normal for Nathan. Every new child that came into care learned about what he was doing. Some Friends even did fake treatments next to him with the retired neb cups. It was normal in our home to do CF treatments. When we finally closed the daycare we, instead, opened our door to the older neighborhood kids and then they learned about CF and treatments. At one point Nathan had 3 boys from the neighborhood that would systematically squeeze his puffer for him, hand him the nebulizer mask, and retrieve his Afflo vest. There are some pretty beautiful things in the world, but I have to say that Nathan and those three friends sharing the TV for Minecraft while he did treatments during the last 6 months in Alaska is one of The Most Beautiful sights a CF Mother can have in her lifetime. …and I’ve had a lot.
Hatching a Plan
We had run the daycare for 5 years, and it was very successful and wonderful, but we had also been landlording. We had purchased our first building 13 years prior, but now ‘only’ had a single four-plex and the daycare. Babysitting kids is great. Babysitting adults sucks. Though not the real reason for making new plans, it was certainly a motivator.
As a family we had to learn to take vacation. Andrew and I had done a lot of travel around Alaska, having lived there our whole lives, and we had taken Nathan on some pretty cool adventures. We had seen moose, caribou, bears, wolves, big birds, little birds, glaciers, and The Mountain. We had fished on the ocean and on rivers for halibut, salmon, and more. We’d kayaked, traveled by train, ridden the ferries, and even flown in the bush planes. Now we decided to try something new. Shutting down the daycare for a week we traveled to Seattle. The next year we visited Napa Valley, via San Fransisco.
Of course CF doesn’t take vacation, so we hauled all the ‘crap’ with us. Nathan did nep treatments in airports and hotel rooms. We’ve even done the vest on a plane. We hauled the Medicine Bag with us on board, off board, through the airports, on public trains, and in rental cars. We’d set up a little medicine station and carried a plastic electric kettle for sterilizing. We carried extra Everything, just in case we got stranded or had an emergency. A pain in the butt? YES! But it also worked. We might have missed about one treatment a trip but we otherwise did everything CF required.
Success? Yes, but sort-of. It took hours and hours and hours to travel in and out of Alaska, and we were only touching the West Coast. We really wanted to do more. What about Niagra Falls or the Grand Canyon? And more importantly what about a trip to Europe? We wanted to be the kind of people who went to Europe regularly. We were done wasting or hard earned money and so much time on unneeded flights. We didn’t want to build a house in Wasilla, only to repeat the same pinned-down lifestyle. “Let’s go!”
It was years in the works before we finally decided to put the property up for sale, and it took years more to get it over with, (again, more about that in my other post,) but we finally hit the road with everything we owned in a Class C RV. We take CF seriously and don’t miss treatments or appointments, but we also don’t let it stop us from fulfilling our dreams.
Full Time RV Family with CF
I very quickly established a cupboard for the med stash, which had about 6 months worth of pills and inhalers, but Pulmozyme in the small fridge was always just barely stocked over demand. We set Nathan up with a place to play video games in the tiny back room while he did nebulized treatments and his vest. He could also do the vest ‘on the go’ since it was battery operated, (part of that master plan.) Getting it all done in the RV was pretty much same as trying to get it all done in a brick and mortar home, though we did have to plan out what needed to be done before we could hit the road each day. Of-course that’s RV life for everyone.
Up until this point Nathan was legally his own household through a program called TEFRA (similar to a Katie Beckett Waiver) and had Alaska Medicaid for insurance. I had switched all of his meds to mail order through Kroger Sub-Specialty Pharmacy, and since we didn’t belong anywhere else, we were still Alaska residents. We had a few planned stops and would have those monthly orders sent to friends’ or families’ houses along the way. Early in the trip I had pretty arbitrarily picked Houston for his next clinic appointment. I had to plan ahead and request that they get established as an Alaska Medicaid approved facility. They were willing, so Nathan got his quarterly appointment and yearly x-ray and labs done at Texas Children’s Hospital. Before we left I had also asked the Anchorage CF clinic and Nathan’s Pediatrician to supply me with a hard copy of all of his records. To this day I keep a paper print out of all of his appointments. Stored, (with much class) in an old cut-off wine box are all of his PFT and lab results, records of any antibiotics he has ever been put on and what for, his immunizations and growth charts… These are incredibly helpful from one location to the next, clinic to clinic.
Deciding to travel meant that Nathan was seeing desserts, caves, and the Atlantic Ocean for the first time, National Parks, Skyscrapers, Historical Locations and a Battle Ship, Zoos and a TON of Science and Kid Museums through the Boonshoft Museum’s Reciprocal Benefits Pass, (Not sure if they still do that but it was worth EVERY penny!) including Houston Space Center and the location of Space Camp in Huntsville, Alabama… It was NUTS! During our first 6 months of travel we moved incredibly fast, but what we saw was AMAZING! Even if that had been the finality of our travels it was already a lifetime of experiences and totally worth it.
But… it wasn’t over. We parked in New Hampshire and flew overseas to London and France, where we visited Paris and St. Malo. Again, we drug all The CF Crap. This time literally dragging bags behind us not only in the airports and on buses, but also through some of the biggest train stations in the world, and down cobblestone streets in city neighborhoods. We purchased a power converter and a battery operated compressor for Nathan’s nebulized treatments. We bought a European ‘pronged’ electric kettle for sterilizing. We made sure to get treatments done before we went out and got back to our room in time for the evening treatment every day. We stayed in people’s homes through AirBnB and in cheap hotels with common bathroom facilities. We got to see The London Tower and Tower Bridge, the Eiffel Tower and Notre Dame, and even got a personal tour of the Louvre from a friend Andrew made online. Plus so much more! Dragging an extra bag and all those meds, taking all the pills each meal, and doing all those treatments on vacation was a huge pain. But was it worth it? YES! We were, again, taking CF seriously, but not letting it stop us.
Now, “The Germ Conversation”
I always compare it to the Chicken and the Egg Conundrum. I can’t help but want to take Nathan out to explore. As a very young child this was as simple as splashing in puddles, creeks, and ponds. I let him eat dirt and touch worms. We frequented the public bus from the day he was born and he literally licked the bus handles. And he rarely got sick. Like I said before, it was ear infections off and on, but not even enough for tubes. I will never know if Nathan has a strong immune system because he collected so many germs regularly, (I recently saw that defined as being a ‘Germophile.’ I love it!), or if he already had the genetics for a strong immune system and could therefore handle all the wild germs he encountered. When comes to travel for us, germs have not been a concern, (and we’re not vaxing for Covid,) however, I know that the immune system situation could very possibly, and could quite probably, change because of Nathan’s CF. If that becomes the case than I will have to change our concerns (or lack there of) for germs. So I understand if this story doesn’t line up with your own CF story, but I think we all, within the CF community, also know that every single CF story is different, even between siblings with the came CF genes.
As a side note, I strongly believe that two factors really contribute to Nathan’s good health with CF, (taking meds and doing treatments aside.) We know there is a correlation between lung health and body weight. It is my personal hypothesis that it is because of the vitamins and minerals that are stored only in our fat. We know CFers don’t digest fats and proteins well and therefore tend to lack the nutrients that are fat soluble, thus having to take extra in the form of a supplement. But if you have no where to store those vitamin and minerals on your body, aka fat, your body lacks these vital building blocks for the immune system. I think the genetics that Nathan received from his family, the ability to hold on to calories well and store them as fat, is probably saving his life, (though his Aunties and Uncles may not be as thrilled with them.)
As for the other big ticket item…. I once stumbled across a Face Book post asking CF Mamas what they do to keep their CFer healthy. There were 150 answers and as I scrolled through them I saw a lot of familiar ones: washing hands and sanitizing surfaces (of course), avoiding pools or lakes, homeschooling to limit germ exposure, essential oils (plenty of those answers), obviously taking meds, doing treatments and getting regular check-ups, and many many more, and they were all good answers, but what I didn’t see was a single “Sleep. I make sure my CFer gets as much sleep as they need.” I whole-heartedly believe that building a lifestyle in which Nathan can quite literally sleep for as long as he wants/needs with very few exceptions has been a major building block for his health. Everyone gets sick. It happens. It pretty much needs to happen. And how does our body handle it? It does it’s magic from inside, and a lot of that happens when we are sleeping and our body can have full focus on it’s mission. Unfortunately Sleep is one of the first things pushed aside in the American fast-paced life. Pretty much NO ONE can get enough sleep if they have even a semblance of a ‘normal’ American life with work and school. Then you mix in kid activities like sports, lessons, or clubs, and then you throw in CF treatments…. yeah I get it. But I will simply say that this is why we chose a lifestyle of time-over-money and live the way we do.
…I’m off the soapbox now.
So what now?
We still live in an RV. We became New Hampshire residents, thinking we wanted to be based there, but quickly realized that we don’t belong on the upper East Coast. There Nathan had, again, had care through medicaid. Andrew began full time school for web development in order to jump into a new remote career that would be mobile friendly.
It was here, in Henniker, that I decided Nathan needed a companion. He was already an only child and now he didn’t even consistently have neighborhood kids to play with. I put out an ad on Craig’s List and a wonderful woman drove 90 minutes each way to give my son a nine week old, beautiful, jet black rabbit. And with this we became a free-range rabbit home/RV to Stellaluna; Luna for short. Nathan loves her so very much. We all do. (Someday I will make a post all about the joys (and serious challenges) of having a rabbit run free in your RV. It can seriously be a pain in the butt, but I wouldn’t change my decision to get her for anything in the world.)
We found ourselves, next, in Moneta, Viginia, where I worked long hours while he schooled. He also took care of allof Nathan’s needs; medical or otherwise. For an 18 month period Nathan was unschooled, but we never stopped treatments and, now on Virginia medicaid as Virginia residents, he still didn’t miss any quarterly clinics. (I’ve found that it takes about a month to get switched to a new state’s medicaid. It gets pushed along pretty quickly with CF on the papers, and both times we’ve had to make the switch were coming in with low/no income so it applied for all three of us. This is part of the need to have at least a little back-up medication.)
We lived in that tiny 27 foot Class C RV with no slide-outs for two full years. Finally we had enough saved to make payments and we purchased a fifth-wheel trailer from someone I had met in the community. Andrew and I now had a bed big enough for us both, and Nathan had a bunkhouse bedroom of his own. Eventually Andrew finished school and began to look for work. Now I could stay home again and take care of Nathan. We got back into homeschool and I took back over dealing with the meds, and treatments, and prescriptions.
RV life is not much different than a brick and mortar lifestyle in that you still have to have a stash of medicines, both dry and refrigerated. You still have to have the vest and a neb compressor tucked somewhere, and a kettle and a place to lay all your sterilized neb cups to dry. We still do a morning treatment and an evening treatment, though we now added 7% saline mixed with albuterol for a second nebulized treatment in the evenings. We still have a rack full of a month’s supply of dosed out pills, though,the biggest news, we now have Trikafta in that mix as well! (We JUST finished our first week as of the writing of this post.)
Though we are still stationary for the time being, we have plans to travel again when winter hits. This time we will do longer stays in places, a month at a time, and not blaze through so fast. It will be interesting to see what our schedule looks like for getting treatments done when we do travel, and we’re not sure yet what we will have for insurance with Andrew working. That leaves the possibilities for clinic locations up in the air.
We’re 10 years into CF and two and a half into full time RV life. Do we have it all figured out? Not on either end. Are we excited? Yes! We will get to go see exciting things again and there is more hope for CFers. When Nathan was born his life expectancy was listed as 37 years. It is now 46. We know that isn’t a time stamp but we certainly aren’t going to just sit around and wait for the end to come. We are doing everything we want to do with Nathan’s childhood now. We only get one chance at this and I don’t want to skip anything. We take CF seriously, but we don’t let it stop us from doing what we dream.