I have a tattoo that stretches the length of my forearm, from wrist to elbow. It’s a decent sized-tattoo. It is not subtle or hidden. It is intentionally out front and on display. My tattoo has purpose and it is, in my opinion, sized appropriately to its task.

My mother has pointed out that it is actually three tattoos. She’s not wrong, but she’s also not right. 

There are three parts, but it tells one story. Each of its three circles represents an aspect of our family’s experience with a devastating and transformative diagnosis that will forever colour the way we see and engage with the world. There are also three levels. The first level sticks out below my sleeve and the third level sits up near my elbow. Moving through these levels helps me manifest the parts of myself that I’ve built up over the last three years to become the parent and the person I need to be in order to navigate the day-to-day in which we find ourselves. It can be joyful and it is full of love, but it is not carefree. That is simply our reality. The shit will hit the fan, again and again, and each time it does, I have three reminders very much at hand to help me put on my game face and get through it.   

It sounds a bit fluffy when I say it out loud, and for some people, it would be bullshit. But there is power in imagery and if there’s anything I’ve learned, it’s how individually we all deal with trauma and fear and stress. My “big-ass” tattoo, for what it’s worth, helps me. And considering where we are in the world and what we’ve all been working through in the last year of upheaval and adjustment to extreme circumstances, I figured it wouldn’t hurt to share. I am not endorsing body modification as a solution to life’s troubles, but I am endorsing doing what you need to do in order to ground yourself when things are spinning out of control. That’s going to look different for everyone. For me, it looks like this.

I got my tattoo a little over a year ago, a couple of years after my two-year-old daughter’s diagnosis with a massive brain tumour. It was (and remains) nonmalignant, but the devastation it wrought on her and our family can’t be underestimated. What started as a lazy eye turned into a lazy eye, fatigue, and eventually a bit of a wobble. Then it evolved to include a slight hand tremor, which lead to a proper diagnosis and admission for major brain surgery. The surgery was generally successful in terms of tumour reduction but it came with a side order of stroke and resulting hemiplegia (paralysis on one side of the body). Issues with intercranial pressure meant the installation of a shunt to drain CSF fluid, and that came with its own lifelong risks. She lost vision in one eye. Then came rehab and chemotherapy and shunt failures. Every step along the way has felt too extreme to be real, like someone else’s story. But it’s all been very real and it has, for good or for ill, become the dominant narrative in the story of our family.

Over the past year, this whole sci-fi existence of ours, where up is down, left is right, and the world is scary and uncertain, has become a lot more relatable. It’s taken a global pandemic, but there has been an exponential increase in the number of people who understand that the highly unlikely is still very much possible. We’ve all had to find a way to wrap our heads around historical levels of disruption and fear.

It’s not, unfortunately, our first rodeo. We are used to safety protocols, isolation, and big, scary questions. We don’t like the conditions or constraints and we’ve had to follow all of it more strictly than most, but we’ve found ways to just fucking do it. We cope. We get through stuff. We’ve learned to effectively hold it together (more or less), for as long as necessary, when things get hard. They’ve been hard for a while.

I find it helps to take control of the narrative and to break it into pieces you can stomach. It helps me put our experience into perspective when I get lost in a thought spiral. I tell myself a story about the battles we have won. I acknowledge the mistakes we have made. I try to balance guilt and regret with the insight and power and skills we’ve earned along the way. I don’t think storytelling is a revolutionary technique, but lessons learned through experience can be hard to remember in a fog of fear and anxiety, so I paid someone a few hundred bucks to stab me in the arm with them for a couple hours…y’know…to make them stick.

I can tell my kids the story as well, so they don’t forget what we have, what we’ve gained by living through it, and the part they play in writing future chapters.  This story isn’t wrapping up any time soon, so we all have to learn its lessons. 

My “big-ass” tattoo (or three moderate-ass tattoos) shows three views of the same tree. No surprise…the tree represents our family. It’s a family tree. I didn’t play coy with the symbolism there.   

At its base, nestled in its roots, sits a floppy, well-worn stuffed bunny with exceptionally high pants. It’s the bunny my daughter held as she sucked her thumb in toddlerhood, before we knew about the tumour. It’s the companion she quietly cradled in the ICU, head shaved and swollen and raw before her speech came back. We dug it out of hospital sheets and cuddled both of them in a mess of wires and tubes as we stared into the face of a thousand unknowns. It’s the bunny she sleeps with now, three years later, tucked into a Frozen 2 duvet.

The bunny at the base of the tree is there to say (get ready to groan) that somebunny loves you. Somebunny will always love you, and will be there for you, from the roots up. This kind of love is a grounded thing, a practical thing. We can hold onto it when gravity reverses itself and just grow. Being there and loving deeply can bring a kid back from the dark.  Being there and loving each other can keep your roots in place when you want to run away because it’s all too much. And also remember that your roots tangle with the roots of others. They help to make the ground more stable for everyone.  When you hold on, others can hold on as well.  Be there and be somebunny for somebody.  Start with that.  Lesson #1.

Moving up a level on the tree, you’ll find a scene from my childhood. I was pretty fortunate to have a legit playhouse in actual trees that my dad built from scraps of wood and miscellaneous leftovers from home renos and repairs. The tree house on my arm, snugged into the crook of the tree, is where Lesson #2 lives.

In the beginning, it felt like our daughter was lost. We didn’t know for a while if she would come back to herself. We  were lost too; living in hospitals, divided from each other and the world. The way home felt epic and elusive. We didn’t know when we’d get back, what it would be like, or how we’d get there. We’d spent the first two years of her life navigating the logistics of severe food allergies but managing the practicalities of medical vulnerability and physical disability was completely new and overwhelming.

Our house needed to change. Our daughter’s hemiparesis after her stroke made stairs impassible mountains. Getting in or out of the house required a team. Everyday trips around the community required equipment (walkers and wheelchairs) and planning. Being almost anywhere we’d always been, took work. It was a ladder we had to climb every day and everything involved a lot of problem-solving. It was hard to get back to a sense of “being home” after four and a half months in a highly medicalized world and it was hard to incorporate all the new challenges we were facing into the way we lived. But we did it. 

Our home, hard-fought to regain, became the safest, easiest place to be…even if it was a struggle to get there.

On my tattoo, our home is the treehouse, atop a cobbled together ladder of rough hammered planks, in the shelter of leafy branches. It’s a good place. It’s a climb, but there will always be love and strength there, along with a healthy dose of problem-solving. That’s Lesson #2.

At the top of my tattoo and close to my heart, there’s an owl. My son, who never asked to play second fiddle to the demands and damage of a mass of errant cells in his sister’s brain, likes owls. His reasons are his own to describe, but for me, there’s a connection with wisdom, an awareness of life in the dark, and a little ferocity. He was only five when he sat in the ER next to his sister. He had to grow up quickly as we all grew into new roles and the stress level in our lives was cranked up to eleven. He copes with change and uncertainty on a daily basis and generally tolerates the fact that there are times when her immediate needs might trump his own. He appreciates the cautions and protocols better than many adults and worries for her, even though we try to help him understand that’s not his job. He is an eight-year-old who puts on his game face at 2am, when his sister has a shunt failure, to gather the iPad and help get her wheelchair out to the car while we clean up vomit and grab the emergency bag from the front hall closet.

He is not a parent, but he has chosen his role on the team and he plays it well. In addition to his alternating roles of entertainer and brotherly tormentor, he’s a therapeutic cheerleader and amateur physiotherapist. He learned to swallow pills so he can take his vitamin D the same way she takes her thyroid medication. He gathered his own friends on the playground to play a version of tag that accommodated her speed when kids her age left her alone in the dust.

Our son is not perfect and he is justifiably angry and frustrated when attention is divided or a fuss is being made about his sister and he’s being pushed to the background. But he’s as wise and understanding and expressive about his feelings and needs as we have any right to expect from an eight-year-old. He doesn’t take it out on her and he doesn’t hold it against her. Generally, his frustration is directed at the grown ups that should know better (including us) or at the people who need a reminder that he is vulnerable and important too. That’s a hard thing to do. That is badass. Owls are badass. We all need a wise, thoughtfully fierce creature in our lives. The owl lives in the tree of my tattoo to remind me to nurture that strength in him, to nurture him in general, to nurture those traits in my daughter as well, and to be thoughtfully fierce myself when I need to be. We are all going to have to look out for each other and advocate for each other because a mass of errant cells are working to ensure our paths in life will not be straightforward.  That’s the third lesson. 

As I said, it doesn’t take a genius to figure this stuff out. Some of it should be pretty common sense, but the universe is a wild place. We can’t always predict where we’ll end up or the parts we’ll be called upon to play. It’s important to know who you are and how you want to exist as the plot unfolds around you. There’s only so much you can actually control. 

• Be there with real, practical love that others can hold onto. 
• Make your home a place of love and safety, in a form that makes sense for you. 
• Be wise and fierce in the dark. Watch out for each other. 

These are the lessons of the story I have written in literal blood and ink on my forearm. I’ve written them to remind me who I need to be; for myself, for my partner, and particularly for my kids. My big-ass tattoo exists to remind me of the part I play in moving our story forward and it reminds me that I am uniquely qualified to play it. I have helped to love a child back from the dark, I have helped to build a family that can weather some serious fucking storms, and I have allowed myself to break down and reassemble in a thousand different ways to do it. I wouldn’t choose our story and I wouldn’t wish a lot of it on my worst enemy, but I’m proud of what we’ve all accomplished and I’m proud to wear our victories on my arm. When I see those little bunny feet sticking out the bottom of my sleeve, I can breathe for a moment and remember that we can do great things in little, tiny steps. I can trace my fingers around the outline of our home to remember the innovation and creative thinking it has taken to adapt. And I can bring my wrist to my shoulder to protect and shield those I watch over. 

It’s just a tattoo and I’m just another former 90s teen with some “ink.” But we all need something to make the hard stuff make sense. Whoever you are, and wherever you are in your narrative, I wish you valuable lessons and a way to make them stick.