An Unplanned Journey Back Home (Amy)
Since the start of our time in Australia, Zoe had been complaining of some aches and pains. Mostly in her wrists, but sometime elsewhere. She’d say her right wrist was sore one day and then the next morning it would be her left ankle, then the left wrist, and somewhere else the next day. It was unsettling but there was no outward sign of something going on. If you know Zoe, she has a very low pain tolerance (she would agree to this characterization) and because she didn’t have a fall or a notable event there was no way to tell if there was something real going on or if it was just homesickness. So as parents, knowing our kid, we just kind of noted it and kept moving on.
Then during our last week in Australia, while exploring Tasmania, Zoe’s wrist started to swell and be warm to the touch. We wrapped it in an ace bandage (as she likes to do) and kept to our plans. She rated it a pain level 2 out of 10— so it was odd but tolerable and we figured it’d go away at some point.
After Australia, we flew to Argentina and instead of getting better, sadly her pain continued to get worse. Zoe started to adapt her body movements and stopped using her right hand and complained of other aches — the other wrist, an elbow, etc. In the mornings she would hobble down the stairs like an old woman, wincing with pain in her feet and ankles. It was terribly odd. She never ran a fever, never had a fall — but cried and complained nearly every day. Hyper aware of her ailment but unclear on what was going on Nate and I had a number of conversations trying to assess Zoe’s mental health; stress, loneliness, and signs of depression. She fit the bill in many ways, telling us “she didn’t want to get out of bed in the morning, everything was painful and hard.” Our family dynamics were simultaneously getting more and more messy as Zoe’s mobility and mood declined. In moments of frustration that we are certainly not proud of, the girls, and Nate and I as well, sometimes chided Zoe “to stop acting like a baby” or to “get on with it” and “toughen up.”
We didn’t know what was going on so we tried to rule things out. We changed our travel plans to give Zoe the most calm, dependable environment. Instead of exploring all over Argentina as we planned, we stayed put in the same town for three weeks where Zoe could sleep in the same bed every night and go to the same language school every day. We tried our very best to find rhythm and regularity, hoping that it might improve her mental health. At one point, we Facetimed with our close friend Tara, an ER doctor from Hoag Hospital, for her to weigh in and took her advice to ice her wrist, get a brace and stay on ibuprofen daily.
But after a few weeks in Bariloche and many tearful conversations, Nate and I decided it was time to fly home and seek medical care. Zoe’s health was not going in the right direction and this wasn’t something we could figure out in a foreign country in our second language. We can converse in Spanish, but we don’t have complex hospital vocabularies. So instead of heading to Peru as planned, we booked 5 tickets to LAX. This wasn’t what our glorious year abroad was supposed to look like. We wanted to see the glaciers and hike majestic mountains we had dreamed about… but those dreams were starting to melt away. No pun intended…
Flying home was a very mixed experience. Although I was conflicted, I really just felt relief. I couldn’t bear to hear my child cry and struggle another day. As a mom, every time she cried, I felt personally responsible and full of guilt for her pain. Had this taxing trip I dreamed up been too much on her sensitive body?
In addition to everything going on, I desperately missed my family and friends. For Nate, going home early was pretty difficult. While he knew in his heart we were doing the right thing for Zoe, there was some serious loss of what we had planned. We were supposed to meet the Nehrig family in Peru to hike Machu Picchu and surf one of the longest waves in the world with all our kids together.
As many of you know the story already, upon arriving home we were seen immediately by a slew of medical professionals who fast tracked us to specialists at CHOC where Zoe was diagnosed with Juvenile Idiopathic Arthritis. I’ll never forget our first meeting with our pediatrician I’ve known for 15 years. He is pretty no nonsense and I’ve never seen him phased by anything we’ve brought into his office. But this was different. In our first meeting with him, he sat in the exam room for at least 45 minutes with us and gave us his utmost attention — I knew things were quite serious by his demeanor.
Long story short, Zoe has been seen by some fantastic professionals at CHOC rheumatology and she is now taking a suite of serious meds to get her arthritis under control. Since starting meds a month ago she is now feeling really good, gaining a lot of mobility and her energy has returned.
Since Zoe was feeling good and our house is still rented until July the doctors were supportive of us returning to our planned travels as we still had a chunk of exciting travel planned (and paid for). So after about three weeks at home we jumped on a flight to Mexico City to catch back up with our last leg of our sabbatical traveling to Spain, London and Africa.
Being home with family and friends and pets and neighbors and an amazing medical team was on so many levels good and just what we needed. We definitely arrived home wounded and beatdown and we left so full. Hugs, laughter, play, home cooked meals, soul filled conversations, walks with River, and dips in our cozy ocean refueled us…in addition Humira, Methotrexate and Neopraxane were just what the doctor ordered.
Reflecting on the lessons learned on this latest chapter of our life here’s what’s tracking for us…
Keep Rolling with the Punches (Amy)
Life has been more challenging this past year than I was expecting. I thought we were going to learn to embrace new cultures and ways of being, but what this trip is really teaching me is so different. Rolling with the punches and continually adapting to what comes at us next is vital. I can’t cling too much to what my expectations and wishes were. I must shrug my shoulders and move on. Pick myself up and adapt — and not cling too much to disappointment or frustration. And trust me — there has been our fair share.
All for One and One for All (Amy)
This one is an obvious one and perhaps I’ve always known this deeply, but if one part of our family is not well — none of us our well. We are all so interconnected as a family, especially a family on the road, that we’re only as well as our weakest team member. Our health and wellness is so interconnected to each other. I now know, more than ever that my well being is only as strong as my entire family’s. There is no “I” — there is only we.
I Need to Lead (Amy)
Perhaps too personal, but one of my jobs as a mom on the road and really always, is to be a leader. Leaders are strong and calm in crisis and aren’t allowed to freak out (at least publicly). There have been so many times on this trip when I have and wanted to freak out and melt down (What the f** is happening to Zoe’s body? How are we lost…again? Why is this so much work and so tiring? But I have realized, perhaps with the help of a friend therapist, that my job is to be the calm stewardess when there is turbulence. My kids have been looking at me during this trip and frankly all of life, to see how to handle things when things don’t go well. Are we freaking out, are we sulking, are we fighting with our spouse too much, are we rolling with punches, are we being grateful, are we looking out for others, etc. I know this is a simple lesson for so many, but it has taken me a while to realize that I’m a human with lots of emotions AND I’m a mom and a leader — and I want to be a calm, empathetic and strong leader. That means my personal freak outs are reserved for Nathan…and only when we’re locked in a hotel bathroom down the hall.
Guilt and Responsibility (Nate)
Sorting out how much guilt we should hold on to for Zoe’s condition is an ebb and flow depending on the day/moment. Did we cause this? Maybe. Could we have prevented it if we didn’t go on this trip or if we did it differently? No way to know for sure…but maybe. It’s easy to riddle ourselves with guilt but there’s just no answer to these questions. Zoe was diagnosed with JIA and the “I” stands for Idiopathic, as we have no clue what caused her disease. Although we don’t want to center ourselves too much in this narrative, we are very aware that perhaps the stress of this trip, combined with her genetics, could have caused the onset of JIA. But at the end of the day, guilt won’t change anything. What we can do is take responsibility for where we are and how we move forward and that’s just what we’re doing. …though the guilt is still there clenching our hearts.
Don’t be Afraid to Sharpen the Axe (Nate)
Even before Zoe’s wrists flared up, there were other hard times during this trip when Amy and I talked about returning home for a break. And if I’m honest, I was always afraid that if we touched foot back at home, we’d never get back out on the road. I feared that the comfort of being home would make finishing our trip feel too difficult of a life. But something I learned through this experience was that the comfort of being home did the opposite of my fears. It actually allowed us to head into the final three months of the trip strong. Had Zoe not had health issues that required us to go home, I don’t know if we’d be doing as well as we are in this last part of the trip. In hindsight, I felt like the person laboring to chop down a tree who says he don’t have time to sharpen the axe. I wouldn’t have asked to go home, but I also didn’t need to fear it like I did.
Get in the F*$#ing River (Nate)
We knew that undertaking this trip was going to require us to be flexible and adaptable…we knew it well enough to name our dog River, as it goes with the flow. And the word River is part of my computer password so that every time I wake it up, I’m reminded to let go and go with the flow…but this is a damn hard lesson to learn, that we are not in charge. When COVID came along and delayed our trip for two years, the lesson was; “we’re not in charge so just get in the river.’ And I wish I could say that we learned the lesson then, but to be honest we’re still learning it. We didn’t plan on delaying our trip for two years, or coming home in the middle of it with a sick child, but what are we gonna do? Fight it and pretend like we have control over the world…or accept life as it comes to us and relax as best we can into the river.
