Putting these words to paper and writing about the most challenging year of my family’s life is forcing me to say hello to my good friend, vulnerability. If I’m being perfectly honest, that delete button is staring me right in the face. “Emily, just hit delete delete delete, go make a cup of tea, curl up, and listen to the rain.” Wrapping myself in a blanket, mindlessly scrolling on my phone, feels safe with the right level of numbing, right about now.
But when I started this blog I promised myself I’d embrace the process and the vulnerability that in reality is a beautiful part of life.
Because it’s that vulnerability that allows us to ask the hard questions, to dig deep, to do the work, to find true connection and to be intentional about how we design our lives.
And if this year in my family’s life has taught me anything, it’s that sharing our stories is more important than ever. Sharing stories is how we learn, how we process difficult emotions, how we expand our minds, and how we connect. It’s how we feel less alone in a world that can be very lonely. Sharing our stories often has this unseen ripple effect for years to come that can make a huge impact.
So what’s my story?
Well, the hardest year of my family’s life started in November 2022. We bravely moved out of our house, put our things in storage, and embarked on a 3 month trip to England and Switzerland (two countries dear to my heart). This would be our first year world schooling our kids (read more about that decision here).
Our hope was to do life a little differently for a few months – to have the kids learn through experiences away from the classroom and to really connect as a family. To have a slower paced life where we focused on quality time with each other, and being present in our kids’ childhood, which we all know is so fleeting. This break in our normal routine would give us the time and space to make some big decisions about how and where we wanted to raise the boys.
When we planned the trip we thought about various challenges we might face during our time away. But any difficulties we thought of were quickly trumped with visions of returning to California with incredible stories from our big adventure. We got on that airplane so full of excitement for what was ahead of us.
One week into our trip it was my birthday. My kids excitedly told me to make a wish before blowing out the candles. I closed my eyes and thought hard. I wished for peace as a family. I sent out into the universe that I wanted our family to learn to live peacefully, without all the noise. And in that moment I really felt that was the path we were on and this trip would help get us there.
Two weeks after that wish, our world got turned upside down. Right before Christmas one of the boys woke up with symptoms of an autoimmune disease called PANDAS. In an instant our life changed. The joy of the holidays were replaced with hours spent in urgent care and driving to and from London for doctors appointments and blood tests.
Our sweet, lovable, easy going 3 year old had turned into a completely different person overnight and we were navigating a health care system in a foreign country. The time that I had envisioned playing board games and baking cookies was replaced with middle of the night research and a heavy admin load managing appointments and paperwork, begging specialists to move us up the long waitlists. A few weeks later we would learn that his older brother also had PANDAS. His onset was 18 months prior, but because his symptoms presented differently we didn’t diagnose it at the time.
Now for a side note and a brief rant. I have mixed feelings about sharing my kids’ health struggles. On one hand I feel strongly that it should not define them and it is their story to tell if/when they feel compelled. On the other hand PANDAS is too often (dis)missed by paediatricians, leaving families scrambling for answers, and forcing them to mislabel their kids with ADHD, Autism, OCD and other psychiatric disorders. And if we don’t share these stories kids will continue to be mislabeled and treated with a revolving door of drugs, only exacerbating the problems. I’ll stop there and save the rest of this rant for another day. Let’s get back to the story.
Well, weeks turned into months and before we knew it our 3 month adventure turned into living in London for a year. Under normal circumstances living in London for a year would have been a welcome adventure, but in this case we were still in the middle of a nightmare we couldn’t wake up from, feeling stuck in England because our doctors were there. Isolated, emotionally drained, and exhausted in a way I could have never imagined.
How could this be our reality? Before all of this I was the mom that made a hot breakfast every morning. I volunteered in the kids preschool. I bought matching pyjamas for Christmas. I did “baking Wednesdays”, where I taught the boys how to bake. I had read all the parenting books. I had done therapy to process the challenges of my own childhood in order to become the intentional mom I always wanted to be. I had moved mountains to build this life, to become this mom.
But instead of being the mom I had always envisioned I became a shell of myself. Instead of waking up at 5am to work out, my single goal for the day was to survive. I felt completely dysregulated. I was not showing up as the mom I had worked so hard to be.
Dealing with an autoimmune disease most people have never heard of and most conventional doctors dismiss, in a foreign country, is about as isolating as it gets. My husband and I were pushed to limits we never thought possible. It was one of those life experiences where you look back and you honestly can’t say how you survived it. You somehow put one foot in front of the other, holding your breath the entire time, knowing you’d do anything for your children, no matter the cost (there were many – financially, emotionally, and physically).
This type of deep pain and grief wasn’t a total stranger to me though. Losing my dad at 22 years old, literally brought me to my knees. Being 22 already comes with so many difficulties – trying to figure out what career path you want to be on, having no money, learning to navigate relationships, and supporting yourself without the cushion of your parents or University – add in losing someone that meant the world to me and I was crushed.
Little did I know that season of my life would be profound with growth and I would challenge my mindset and expand my worldviews. I believe that you can’t go through life’s hardest moments without changing. You’ll never be the same person, but oftentimes in the most incredible ways.
It’s been over 10 years since I lost my dad and now I can look back with immense gratitude for the learnings I gained from that experience. My hardest season turned into my superpower and pathed the way for me to live with more compassion and without fear of the unknown. I was forced to rebuild my life from the ground up at 22 years old, but that experience made me unstoppable. I knew I could handle anything that was thrown at me feeling confident I’d find a way to thrive on the other side. In hindsight I had already accomplished this more than a few times in my life.
So when we were sideswiped by the year that turned our family’s life upside down, even in the darkest moments (and there were many), I knew something magical would come from it. I didn’t know what or when, but I held on to that belief no matter what.
Then I saw it. Navigating the boys’ health struggles was this ironic parallel for my own life. The more I learned about what is underlying PANDAS and how to heal my kids, the more I realised how much I didn’t know about health and medicine in general.
I had NEVER asked the questions.
Conventional medicine completely failed us and so like many PANDAS families I started exploring alternative options. A year later we were definitely on a path to healing, but only because we challenged all conventional paths of medicine and did not give up or take the first answers we were given.
Sounds a bit like what we were trying to accomplish with our own life when we got on that airplane to embark on our 3 month adventure. The conventional paths of public school, hustling and the oh so familiar daily grind wasn’t working for us so we were exploring alternative ways of living.
Oh the irony I can now see.
This parallel showed me how much learning, unlearning, and self-exploration I still needed to do. This moment wasn’t about being the mom who makes animal shaped pancakes and unschools her kids (these things are important to me, but they don’t define me). No, this moment was about (re)discovering who I am as a woman.
My focus shifted to self-discovery, healing (myself and the boys), and searching for ways to discover my power as a woman. In order to fulfill this vision I had for our family I had to start with the deep work of owning who I am and accessing my truth. Only then could I truly show up as an authentic mom, wife, entrepreneur, friend and more.
So despite thinking I had it all figured out, this nightmare made me realise I still had a million more questions…
During this time I read Atomic Habits over the course of many sleepless nights and this quote from James Clear stuck with me.
“When you fall in love with the process rather than the product, you don’t have to wait to give yourself permission to be happy.” – James Clear, Atomic Habits
So while I enter this season of asking all the questions I am also learning to embrace the process and dive into the vulnerability. This blog will never have all the answers, but I promise to ask as many questions as possible and share my learnings along the way.
+ show Comments
- Hide Comments
add a comment