*Warning: naughty language ahead!
“When we own our own stories, we avoid being trapped as characters in stories someone else is telling.” ~Brené Brown
I am a single mother.
I have an 11-year-old daughter with Autism.
Those two variables can make life challenging enough, let alone adding the stress of a worldwide pandemic and the constant fear of contracting a virus that may or may not kill you.
It’s a lot.
Over the last few months, I have managed to “get by” working from home and feeling terribly guilty about all the time my daughter has spent on her iPad while I worked on my computer in the other room.
After months of living in “survival mode,” I was desperate for some relief from the monotony of quarantine life. I decided to go out on a limb and plan a trip to one of my favourite places on the planet: Tofino, British Columbia.
I couldn’t think of a better place to go to revive my soul. Tofino sits at the tip of a peninsula on the west coast of Vancouver Island. Its rugged beauty combined with endless white sand beaches and undulating waves always elicit a euphoric state in me from the moment I arrive. It’s a sacred place for me.
I felt like if I could just physically get myself there, I would forget about all my problems and all of the problems of the world, and just be…even if it was only for three days.
I desperately needed to just be.
My daughter and I headed out on our first ever road trip to the island from the interior of British Columbia. I was nervous about driving across the mountains alone with her in case something happened, but I forced myself to be brave. I downloaded three of my favourite podcasts for the passage through the mountains where there was no radio or cell coverage and I reassured myself that everything would be fine.
And it was. We crossed the mountain range and arrived in Vancouver, where I met up with my sister and nieces who were going to join us on our trip.
We all grabbed our masks as we headed to the ferry to sail to Vancouver Island. It was 6:30 p.m. by the time we got to the port of Horseshoe Bay, and it could not have been a more glorious evening. The temperature was heavenly, 84 degrees Fahrenheit if I had to guess.
I walked around the upper deck of the ferry and felt the warm breeze cross my smiling face as I noticed my daughter spin with glee as she was blown and tossed by the wind. Her curly hair was spun up and down and around by the wind and her smile lit up my world.
“Good job mama,” I told myself. This is what being brave is all about—pushing yourself to do something that is scary to reap a beautiful reward.
My daughter held hands with her cousins and gave her aunt multiple hongi’s while we sailed across the Strait of Georgia. I proudly posted all the soul-filling pictures on my Instagram page, eager to post more over the next few days. I was living my best life.
I was with family.
I was in beauty.
I was on my way to a hallowed land.
I felt joy bursting inside my soul as we got closer and closer to the island.
We got off the ferry, found our hotel for the night in Nanaimo, and went to bed. That’s when everything changed.
Euphoria morphed into paranoia.
About an hour after my daughter fell asleep, I could feel her body wriggling beside me. Fear rushed over me instantly, as there have been many times in the past when “wriggling” preceded a really serious fever. I tried to remain calm and tell myself everything was going to be okay, but as I reached over and checked her forehead every 30 seconds, I noticed it was getting warmer and warmer.
My sister could hear her, too, and asked me if everything was okay. I tried not to cry and said, “I don’t know. She’s getting hot.” I thought maybe she had just eaten something that didn’t agree with her and prayed everything would be okay in the morning.
I didn’t have a thermometer with me but I could tell she was really, really hot. Too hot.
Then the nausea set in. In a small hotel room with five people, she projectile vomited everywhere.
I could feel my head starting to spin. This was too much. Why couldn’t we just have a fun trip? Why did it seem like something always went wrong in my life? My mind started taking a tailspin down memory lane—divorce, autism diagnosis, breakups, worry, fear, anxiety—I could feel myself begin to unravel.
Her temperature was triggering many terrible memories when I had felt desperate in the past. Despite all the “inner work” I had done over the last few years to overcome adversity, this visceral worry for my daughter was causing me to begin to tell a story about myself. I was a failure; I was a loser; I was the unlucky one.
Once the nausea woke everyone up, we all lay awake in the room trying to decide what to do. Being that it was COVID-19 time, we quickly decided there was no way we could chance bringing ourselves to a small community when one of us was unwell—just in case.
There were so many emotions reeling inside of me. I was so sad our renewing trip was cut short by illness, but now I was worried about my daughter’s health. Her body was getting hotter and hotter.
We made the decision to take the next ferry home in case she needed medical care. She and I stayed in the car while we sailed back across the Strait of Georgia less than 12 hours from when we left.
There was no twirling in the wind on the deck this time. Her weak, hot body was slumped over on me in the back of the minivan and her eyes stayed shut. She threw up three times in the van. She was nearly lifeless.
I was so afraid.
I also felt like such a failure. Why did it seem like nothing ever went right for me? I had been looking at so many families making summer memories in their “Insta perfect” life and I desperately wanted to make some of our own.
Even though our family looked different, I just wanted to do something special. A combination of depression, worry, anxiety, and sadness set in as we neared the port in Vancouver. Once we returned to my sister’s home, I nestled my daughter into bed and tried to give her fluids and Advil, but she kept throwing everything up. I started to get really worried.
“I think something might be really wrong with her,” I told my sister. She reassured me and said if things didn’t get better, we would take her to the hospital. I was so grateful for my sister’s support.
After two days of giving her Tylenol and letting her rest, it was clear I needed to take her to the hospital. This little girl who is normally full of life would not get out of bed and could barely open her eyes.
The fact that she could not verbally tell me where it hurt only made the situation more dismal. I tried not to let myself go down that alley of sadness and worry that every parent of a child with autism does every, single, day. Not today Wendy, not today. You are not allowed to worry about her future today. You are not allowed to worry about her safety today. Today you must focus all your energy on getting her well.
I pulled my shoulders back and told myself I could do it, as I helped her get from the car to the wheelchair so we could go into the emergency room. She couldn’t even walk.
I was so sad.
After a series of diagnostic tests including blood tests, chest x-rays, COVID-19 tests, and urine tests, it was determined she had a serious kidney infection. She probably had been in pain for weeks prior, but she was so tough and couldn’t tell me that I didn’t even know.
Sigh. Another stab in my heart. What I would give for my daughter to be able to talk and tell me where it hurts.
The ER doctor mulled over whether or not we should be admitted or treated at home, and eventually decided we could try taking the antibiotics at home, but sternly told me, “If she can’t keep down liquids, you have to come back.”
My mind flowed down memory lane again. Almost 10 years to the day, my daughter had been admitted to the same hospital for pneumonia. We spent almost a month in the hospital, while I held her still and tried to keep the lifesaving IV in her arm. She was tiny then. How could I hold her still now that she weighs more than me? I prayed for a miracle. I prayed God and the medicine would heal her at home.
Once we got home and I was able to get the medicine to stay in her tummy, I cozied up to her and tried to make sense of all that had happened. I know “sh*t happens,” but I was tired of “sh*t happening” to me. I needed some answers.
When I saw she was firmly asleep, I crawled up out of the bed to pour myself a well-deserved glass of wine, stood in my kitchen staring into space, and was just stunned by the events of the last few days.
I did not see that coming.
While holding onto the glass that was getting emptier and emptier, I glanced at my bookshelf and noticed the book Rising Strong by Brené Brown. It had been sitting on my shelf for over a year and I had yet to pick it up. ”
I need to ‘effin ‘rise strong,'” I thought to myself, so I pulled it off the bookshelf and peeled the pages back while I opened the cover.
I haphazardly flipped open to the introduction and landed on these words,
“If we’re going to put ourselves out there and love with our whole hearts, we’re going to experience heartbreak. If we’re going to try new, innovative things, we’re going to fail. If we’re going to risk caring and engaging, we’re going to risk disappointment. It doesn’t matter if our hurt is caused by a painful breakup or we’re struggling with something smaller, like an off-hand comment by a colleague or an argument with an in-law. If we can learn to feel our way through these experiences and own our stories of struggle, we can write our own brave endings. When we own our stories, we avoid being trapped as characters in stories someone else is telling.”
As I read through this passage, I had multiple “aha moments,” or “aha-gasms,” as Oprah calls them.
I took a chance going on a road trip with my daughter. Even though it may not seem like much of a feat to some, it took a lot of bravery for me to attempt the trip. It didn’t work out as I planned, but I still tried, and I began to feel proud of myself for trying. The next aha moment had to do with the last sentence—owning my story.
It seemed that ever since my marriage ended, and as I dealt with the worries and stresses that came with having a child with a disability, I was always trying to escape my story. I felt ashamed of my story. I wanted a different story. But wanting a different story doesn’t change anything; it just makes you miserable while you reject your own path.
I am going to read the rest of Brené Brown’s book, but I gleaned so much just from the first few pages.
This is the key getting back up when life disappoints you.
Own your story.
Own your story.
Own your story.
Own your story.
No matter what it is—own it.
Accept where you are, as shitty as it may be, and then write a fucking kick-ass ending!
I am Wendy, the warrior mother of a daughter with autism, who is going to show the world that just because you have a few hard knocks, it doesn’t mean you can’t have a beautiful life.
That is my brave new ending.
When life disappoints us, we can get back up by owning our story and then writing a freaking Martin-Scorcese-worthy ending.
“The middle is messy, but it’s also where the magic happens.” ~ Brené Brown, Rising Strong