Making the Most of the Cards You’ve Got

Lifetimes ago, when I first started this blog, I wanted to be helpful. Back then, I was overwhelmed with the idea that my kid would go through life with a collection of food allergies that exceeded the capacity of her medic alert bracelet. I figured others must be out there, feeling the same way.

I was new to a world with specialists and protocols, and I was neck-deep in a lake of frustration and logistics that most other families and a lot of other kids didn’t have to deal with.

I wanted to connect with other parents who were trying to figure stuff out. I wanted to make them laugh and roll their eyes and stomp their feet in empathetic fury when an ignorant dink (who could have been me in another parenting life) sent their four-year-old onto the playground climber, covered in a thick schmear of peanut butter. Observation: The same kids always seem to have cheese-powdered Doritos in hand. (Just clean their fucking hands first, is that so hard!?!)

Clearly, if you’ve read anything on this blog before, you know that was just the tip of the iceberg with the list of conditions and obstacles my daughter has had to overcome. The food allergies, at this point, feel like a foot note.

It’s a pretty common scenario to be half an hour into her medical and therapeutic run down, when I add “Oh…I forgot to mention…she’s ALSO allergic to everything in that other kid’s lunch box, so don’t let her touch it.”

We have become members of many “exclusive” clubs and my daughter seems to dance between a number of them at any given time. Some of her conditions are uncommon, but the deck of membership cards seems to grow rather than shrink as the years go by. One club tends to lead to another.

Not everyone carries the pediatric brain tumour card. Even fewer carry the pediatric stroke card. The combo of those two is another slice (of a slice) of the statistical pie and together they lead her, by pure shitty luck, into different undesirable categories of rare and scary scenarios for growth and development.

Some of her conditions, resulting from her major medical stuff, exclude her from things that are typical for kids her age (like riding a standard two-wheel bike). Society excludes her from a few more (like front-door access to her school or playing tag with peers at the park). Food allergies were just the first level of all that. Her conditions are varied, overlapping, and like every kid…unique.

As a result of all this, we are “frequent flyers” at the local children’s hospital. It’s a good one. It has all the departments.

And over the last three years, we’ve been trying to hit as many as we can. I’m pushing for a set of collector cards!

We’ve run into so many magical people in so many different roles, all nestled within the different levels and departments of the local medical community. I can totally picture what their ability stats and “hit power” would be. We’ve all got our weaknesses and weapons and armour. There are so many characters in our medical world that would absolutely blow up in manga-illustrated glory.

At our level, we’d have cards for something along the lines of 20 different specialists and/or departments; everything from cardiology to ophthalmology, endocrinology to intensive care, gastroenterology to (of course) oncology.

We’d have all three neurosurgeons from our hospital’s collection. A complete set!

There are definitely families that would leave our collection in the dust. They have enough cards in their decks to earn VIP status — with lounge access, fresh fruit, and foot massages.

We’re probably closer to free coffee and an extra blanket with every overnight stay. We’re there a lot, but others are there much more.

Players who’ve been collecting a long time, with all their cards in hand, can tell you which bathrooms are still clean at 5pm and which bathrooms will be out of toilet paper by 10am. They can tell you which hallways are empty after rounds (if you need a place to sit on the floor and cry) and tell you which cafeteria worker will smile and call you “honey” when you need a nonclinical face to be kind and hand you hot french fries with cheese and gravy.

They offer sympathy and laughs and hand you the remote for the waiting room TV (if you’re allowed to change the channel). They understand that look on your face, when the doctor has left the room, and give you a nod.

Knock on wood, our collection has recently been focused on the outpatient edition. We’re still collecting new cards from around the hospital, but we’re mostly there for touch points, and check ups, and bloodwork. We’re in maintenance mode right now, but you never know when a new and exciting card is going to make its way into your deck.

For players who are new to this game, whose decks are small but growing, I’m sorry. It’s not a fun hobby, but there are skills you can acquire and steps you take to make the most of the cards you’ve got in your hand.

Tip 1: Assume everyone is having a shit day.

Be nice. Not sugary sweet, but respectful, compassionate. Give someone an energy boost if you can.

This applies to pretty much everyone you encounter that works in a hospital. People are at their worst in a hospital and staff often take the hit for that. Some people who work there will be turds because health care workers are human beings. But I’ve lost track of the number of occasions where a custodian, porter, volunteer, nurse, or friendly doctor in the elevator have completely changed the tone of our experience for the better with a small and simple gesture. Hold a door, smile, be patient, be polite, let someone know when they’ve helped you, show appreciation, and take a breath before you take someone’s head off.

For the love of God, treat the parking staff like human beings. People are rude to them all day and their office is likely in a windowless sub-basement. Like most human beings, they deserve a little empathy. Even if they seem grumpy at first, they’ll remember you were kind and they’ll be kind too. You will lose your parking passes. The gate will get stuck. You will leave your lights on and need some help when your battery dies…on top of everything else you’re dealing with that day.

Pay the good stuff forward and try to internalize an assumption that everyone in that building is going through something you don’t know about and could use a pick-me-up.

Tip 2: Back your car into hospital parking spots.

This sounds like a small thing, but it is important. Underground parking spots are teeny and the rows are tight. Everyone there is parking under some kind of duress. If you drive forwards into a spot, someone will absolutely park too close for you to effectively extract your vehicle when it’s time to leave. You’ll end up doing an 87-point turn when you’re emotional and overtired and the parking attendant will have to come over to redirect traffic the wrong way so you can wiggle your way out like a chump. Back in. Trust me.

Tip 3: Keep a “hospital bag”

If you’ve got a kid, you’ve probably had that backpack or suitcase in your closet in the weeks before your due date. If you’ve got a person in your life who is medically vulnerable in some way, pack that bag and keep it handy. At 2am, when shit goes down, you’ll be glad you did.

Things to keep in the bag:

A change of clothes (PJs work for almost all occasions) and underwear for the patient
Slippers or flip flops for the patient
A spare stuffy or comfort item (as age appropriate…a bottle of gin to calm mom’s nerves will generally be frowned upon)
A notebook and pens, crayons, markers (good for entertainment or blurry-eyed note taking of terms or follow up steps), tiny toys, or cards
A printout of medical conditions, medications, surgeries, medical history (there are a lot of forms to fill out and questions to answer in an ER situation and sometimes it’s hard to recall dates and doses on the spot)
A towel. Douglas Adams was right. A towel is always useful. (It’s a blanket, a pillow, a wrap for belongings, a barf catcher, or you know…a towel.)
A spare charger for your phone
A set of ear buds or headphones
Snacks (granola bars, raisins, instant oatmeal packets to make breakfast in a Styrofoam cup with nothing but hot water)
Wet wipes and deodorant. A comb. A toothbrush. Hair elastics if you or the patient use them.
Tylenol/Advil. Fatigue often comes with a headache. You will be tired and your head will hurt or your back will seize up from those terrible chairs. The pain meds the hospital provides are not for you. They’re for the patient, so bring your own.

Something to keep on the bag:

Tape a piece of paper to the bag with a list of things you’ll need to add to the bag before running out the door
- Health card
- Current meds
- Cell phone or device to entertain the patient
  - Note: If you have a tablet of some kind, it’s good to keep a download of shows or movies the patient likes on there all the time. This is a good job for siblings to help with. They’ll pick better stuff than you. Maybe apps or games they like. Drawing apps are always fun. Makes long waits around the hospital a little less cranky and you won’t have to worry about patchy (or expensive) Wifi access.

Tip 4: Keep a set of hospital clothes to throw on at a moment’s notice.

The first time you do a 2am ER run, you’ll go in your pajamas. The next time, you’ll be ready to settle in for a longer stay. Keep a little bundle of the following on a shelf somewhere in your closet.

Sweatpants (You’re not trying to impress anyone here. You can sleep in these and you can wear them around.)
T-shirt and hoody (Hoods are good to pull over your head to grab a nap under fluorescent lights. You’ll want layers because hospitals are either freezing or raging hot. There is no connection to the weather outside.)
Socks and slip-on shoes.
A comfy low impact sports bra (or equivalent). I cannot stress this enough. Find a bra that is comfortable enough to sleep in (no underwires!), but hides your nipples (if you have an issue with your nipples being seen). Residents will barge into a room at 8am, fully dressed and full of coffee and expect you to bounce up off your reclining chair/pull out bed beside the patient to answer questions or get an update. If you wear a bra, make sure you have one you can sleep in.

Tip 5: Keep a “book”.

Every game has a guide. When we first got into this whole business, we had daily notes to keep. There was a tsunami of information to be processed on very little sleep. You’d be surprised what the average caregiver has to track and recall. There are a lot of questions about what goes into and out of your kid. Not just meds and tests. At some point, you’ll find yourself trying to figure out how to convert three sips of apple juice into milliliters. At some point you’ll have seven different descriptors for poop you’ll have to choose from. There will also be a lot of jargon and terminology you don’t understand.

Make notes. Don’t be afraid to ask the specialist or nurse to repeat themselves or to write the name of that drug they’re adding to the IV. Stick test results and discharge papers in the book. Get one with pockets or add a clip to attach prescriptions or requisition forms you need to hold onto. You’ll get the paper requisition for the blood series in hand and an appointment for that specialist several months later. They’ll expect you to have the paper requisition…even though it’s all in the same building…on the same computer system. I have no idea how hospitals work. Just hold onto the papers.

We’ve gone through several iterations of “the book” and over the years I’ve printed different templates and customized calendars to our tracking needs. Most of it I’ve abandoned for a simple duotang with some print outs and some loose-leaf lined paper. Find a system that works for you and one that any other caregivers or partners can understand and follow.

Keep notes after appointments. Note the date, which specialist you saw, and the general gist of what they said.
It’s a good idea to have a section for “ToDos” where you can list the calls you need to make, insurance claims you need to file, and specialists with whom you need to follow up. There are apps for all this stuff, and I find reminders are good, but it’s easier to hand a notebook to another caregiver, and there are so many pieces of paper you’ll have to file somewhere anyway. Might as well go analog. Also…it’s highly likely your kid will be watching something on your phone, or your battery will die, just when you need it.
You can dedicate a page to each specialist if you’re particularly organized. When something comes up that needs to be passed down to the next specialist in the chain, you can note it on their page and check that specialist’s page when you have that appointment. It’s easy to forget what you wanted to ask when you’re on the spot.
Note questions you have on the way home (because you always forget to ask something).
Keep a master calendar of key “events” that have happened over the last 6 months or so. This can be consulted “at-a-glance” when you need to answer questions about dates for things like changes in dosage, weight and height notations, scans and results, medication cycles, ER visits, or past specialist appointment dates.

If that all feels like a lot…it is. Shuffling the deck and keeping track of the cards you collect is overwhelming. Most of the time, it’ll feel like you haven’t got a clue what you’re doing and often it’ll feel like you’re doing everything wrong. You know…it’ll feel like parenthood.

We didn’t know that we were signing up for all these clubs. We didn’t read the fine print and we don’t have a binder big enough to hold all the cards we’ve collected over the last three years, let alone the cards we’ll collect over the next, like 20, as our daughter grows and her condition changes.

But the experience points we’re gaining are off the charts. We can handle a hit without taking too much damage. Our kids have both earned battle scars that hurt but we know those experiences will make them stronger and more empathetic in the future.

Whatever deck you’re collecting, I hope it’s a limited edition. I hope you get some shiney special edition cards that power you up and I hope you make smart trades and assemble the best line up you can to get through it all.

September 29, 2021 0

My “big-ass” Tattoo

I have a tattoo that stretches the length of my forearm, from wrist to elbow. It is, according to some (including my mother and many of her peers), a “big-ass” 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.

black line tattoo of an owl, a treehouse and a toy rabbit — Tattoo by Sherlane White of Sleepy Bones Tattoo

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.

March 8, 2021 0

Game Face

In my youth…

Ugh, it pains me to say that: “In my youth…”

While still technically in my late thirties (very late thirties), the last year has aged me physically and emotionally well into late middle age.

When my daughter got sick, I chopped all my hair off into a pretty severe mom pixie. At the time, I was sleeping in vinyl pull-out chairs and washing it in restroom sinks. It’s a little longer these days, but I’ve added two significant grey patches that are now growing into full-on streaks. I’m doing this, in part because I’m lazy, but also because I feel I’ve earned the right to not give a fuck about dying my hair. One advantage of being a full time caregiver is that literally nobody cares what you look like, including, most of the time, me.

I am, however, trying really hard to be healthy…not fit, not sexy, just healthy. I’m terrified of not being well enough or strong enough to care for my daughter or to keep my family running. My partner is busting his ass keeping us afloat financially through all this. My job is to stay standing, and at this age basic maintenance requires a significant effort. I can’t go down…not for a cold, or a sprained ankle (which I generally do a couple times a year), or (God-forbid), anything more serious.

The long and short of it all is that I feel old. Older than I am. Wiser than I was. More cynical than ever, but also, in dark and serious ways, more capable than ever. And this brings me back to what I originally intended to talk about here.

In my youth, I played a lot of sports. I was never particularly good at any of them, but I was, generally speaking, athletic enough to make a team, committed enough to feel I should pull my weight, and cool-headed enough to get the job done in a pinch. I wasn’t particularly competitive (which is good, because I wasn’t particularly gifted) but I was consistent. I was a solid, second (sometimes third) string volleyball player who could reliably serve the ball over the net when the pressure was on, or at least get the ball to the setter so someone else could hammer it. Not a lot of power or glory in that, but I could pull it together if people were counting on me to stay level-headed. In life, I’ve not always been so level-headed. I’ve always had a temper and sometimes my anxiety and imagination get the best of me. But, I think I can say that when it has really mattered, I’ve generally been able to put on my Game Face and get shit done.

The last 10 months have involved a lot of Game Face; ludicrous amounts of it. With all the ups and downs of diagnosis, treatment, surprises and setbacks, I have developed Olympic-level Game Face. This isn’t to say I don’t fall apart. I do. A lot. With swears and tears and gnashing of teeth. But there are points everyday where that reaction simply will…not…do.

With the best of intentions and love, friends and family praise and wonder at “how you do it” or “how you’re holding it together.” But there really isn’t a choice. (At least no one’s given me a choice. Is there a choice? Somebody better fucking tell me if there’s a choice.)

As parents in our kind of situation can attest, big kid pants are frequently the only option in the closet.

I remember, about a month into all this mess, a late night wander through the hospital halls. There was a hand written sign on the wall that read: “You never know how strong you are, until being strong is your only choice.” The internet tells me this is a Bob Marley quote. It was a literal sign, written by one of the teens in the hospital’s mental health program. (Want to talk about strength? Look there.)

Throughout our extended stay at the hospital, I’d see pencil crayon-coloured signs like this go up and down. One or two of them, including a rainbow “Never give up.” sign, posted by the elevator near the pediatric intensive care unit (PICU), is still roughly taped up nearly a year later.

Sometimes this kind of thing feels like a platitude and other times it feels like a giant pile of relevant shit. At that point, we were the ones on the ward that the nursing staff was, to quote one individual, “praying for.” It’s a secular hospital, so that wasn’t as encouraging as that individual probably meant it to be. It reinforced the feeling that our situation, from the perspective of someone who had seen a lot of bad, was definitely not good. There were a lot of questions. Things were as hard as they could be.

To me, that night, that sign (“You never know how strong you are, until being strong is your only choice.”) felt like at least one other person, beside my partner and I, had been in it, good and deep, and had waded through it simply because it was the thing to do. At least one other person (though I’d go on to meet many, many other families who were in shit situations like ours) had been in a place where Game Face was the only option. We were not warriors, or soldiers, or amazing parents…just people who had to get through because our kids needed us to.

The sign reminded me of the evening my partner called from the hospital to tell me about our daughter’s stroke. The brain surgery had gone as planned. Her brain, however, had reacted poorly to the shuffle. She’d lost all movement on her right side. She wasn’t talking. I’d just arrived home from a sleepless night in the PICU. It was my turn to recover a bit and connect with our six-year-old son. My phone rang and I stepped away from dinner with my in-laws to take the call in my office. My partner was understandably a mess. The medical team had walked in shortly after I left. The doctor hadn’t been particularly delicate about it. We didn’t know why it had happened or if she would recover any speech or functionality. There was nothing to do but wait. It was fucked, but there was nothing to be gained from going back to the hospital to stew and wait. My partner and I needed each other, but our son (at home) needed me too. We were trying to support him as much as we could. He’d already been passed around quite a bit.

I got off the phone, told my in-laws I needed to clean up and didn’t mention the call. My partner would fill them in later. In the shower, I shook. I didn’t cry because I couldn’t. If I’d started there would not have been an end to it. I got dressed, finished dinner, hung out with my son and put him to bed. Four straight hours of the most intense Game Face I’ve ever worn, followed by another two hours of silent ugly crying into a pillow.

A week later I took my son to baseball practice. I gave him a thumbs-up and a smile as he played. I watched the preschoolers playing soccer on the grass two fields over. Three weeks prior, our daughter had been running with that exact group. She’d shouted “Watch me coach!” with a hilarious Boston-y accent every time she kicked the ball. As far as I knew, she wouldn’t do that again. I ground my teeth and compulsively checked messages on my phone to hold it together. Game Face.

Countless times we’ve held our daughter writhing in our arms, doing anything to distract her as she’s poked and prodded, scanned and swabbed, knocked out and injected. Game Face. Game Face. Game Face.

Game Face is a skill. It has been learned terribly and traumatically, but I am proud of it. I am proud of what my partner and I have managed to endure. I wish I could put it on my resume. I also wish we could have learned it, as a couple, without all this.

It does not mean that we are not shaken.

It does not mean that we do not fall apart.

Those things have to happen, because the solid truth of Game Face is that you cannot wear it all the time. It can’t just become your face. Nobody wants that face.

You have to feel and to move through it at some point or the nasty manifests in an outburst, or a breakdown, or a break up, or an illness of your own. Game Face is not sustainable without consequence.

This means we have to tag team.

This means we have to find a balance between Game Face and allowing ourselves to actually feel things. You need a team for this kind of game; one person to hold it together until the other one has unloaded and recovered.

Game Face can be hard to shake and it’s important to notice when your partner is reaching their limit so you can put yours on. How do we do it? We talk a lot. We talk pretty candidly. We also shut the hell up sometimes. That’s important too. Especially when we’re deep into a procedure or when the demands of life outside our family’s medical experience need to be managed.

Strength, as a parent, is not something you just have. It’s not instinctual and it doesn’t come naturally. You learn it in the early days when your infant is screaming and you don’t know why. You learn it when your kid scrapes their knee and you manage to calm them down. You learn it when they go off to daycare or school and you discover that they are actual human beings that make mistakes and cause drama and you need to figure out how to help them navigate it. This year, we have learned strength in dark rooms with beeping monitors. We have learned strength in cold hallways and crowded exam rooms. We have learned strength in hospitals, rehab centres, and at home.

In my youth, I was proud of my Game Face. I still am, though the shift in context from high school volleyball to the extensive world of modern medicine and treatment is more than a little overwhelming. Truth be told, Game Face often teeters on the border of being a pretty unhealthy smoke and mirrors trick. But desperate times call for desperate measures, and I’ll use every tool I’ve got to get by, one week to the next. We haven’t had more than a couple months of calm between any particular upheaval, so for now, I’ll buy into the illusion that we can handle this. My expectation is that in time, it’ll translate into genuine, enduring resilience, because our particular situation isn’t getting any lighter. My hope, is that somehow, someone, somewhere, will give us a way to opt out of the need for Game Face altogether.

January 26, 2019 2

Music Therapy 2: A Better Son/Daughter by Rilo Kiley

So the beast in the background has been growing. Fuck you tumour!

The last month has been peppered with amazing and devastating moments that I’m too tired to go into right now, so I’m turning again to the music that seems to capture the great swings in motivation and insight that come with medical trauma and treatment and caregiving. To sum up…my daughter continues to flourish and laugh and improve on that great wave of rehab from her stroke, like only a three-year-old can.

However, the big bad in her brain has been growing and now we’re into 70 weeks (that’s right, 70 weeks of low dose, but still scary) chemo treatments to keep it at bay. This is the first round of this kind of treatment, and on the day-to-day, it’s not supposed to be terrible. But, it won’t be the last. The goal is to “only” do this three or four times over the next fifteen years, until her body, and hopefully the tumour stop growing. It sucks.

While I can’t say that this whole experience has made me any more optimistic than I’ve ever been (I don’t think anyone has ever described me this way.), it has hammered home, again and again, the need and benefits of channelling whatever I’m feeling into conscious empathy, and striving to not be a turd, even when I’m angry…which I am…a lot of the time. You never know what someone is going through, or has been through, or might have to face in the next 24 hours. Friends, family, professionals who work with you and your friends and family, people you don’t know, but cross your path, or get in your way, or treat you poorly, or plain old screw things up.

Shitting on someone, even when you have every right to feel miserable and angry and bitter, rarely, if ever, improves any situation. Even truly crap situations are a lot more bearable (for everyone) if you can rally to find the humour, or the love in it, or if you can simply put yourself in the position of your fellow great stinking pile dwellers. Some of them are also just trying to make it through the day, or have had a lot of “days” to get through.

Mindfulness is a term that gets bandied about, and I will disclose fully that I’m no expert and I don’t always achieve it. I may even be misunderstanding it (I’ve done no research on this.), but here is what it means to me now, and how it applies to a few things I’ve learned in the last 9 months.

I am mindful that everyone has their own situation they are dealing with. Everyone. The doctors, the janitorial staff, the nurses, the admin person who sounds irritated that I haven’t brought the right forms. The teacher, the daycare worker, that family member who always says the wrong thing at the wrong time. Everyone is trying to get through their day or life and has moments that are hard or easy and those moments may be interpreted differently than I would, but they’re still experiencing them. I’ve frequently been on the edge this year, and sometimes it’s the simplest caring, supportive, or even just civil gesture that has helped me step back.

So, I’m trying to be better. Trying to be aware. Trying to smile and be warm, even when I can’t be positive or nice.

I am mindful that I need to identify and express that sometimes I’m angry at everything. If I can say to my partner or child, “I’m having a really hard time right now. This isn’t about you. I’m trying to calm down and work it out.”, they usually get it and the snowball of emotion and snippiness can be stopped. This goes both ways. As a family, it’s not something we’ve consciously started doing, but it’s become an essential communication pattern for getting through some really hard times.

I am mindful of the ripple effect I have on those who deal with me, interactions big and small. I believe we receive better care because we try to treat the people in our medical world like they’re people. I believe my family is still standing because we’re all trying really hard to understand what each other is going through.

The trying part is key. It doesn’t always happen, but trying is the thing. Here’s where I loop back to the song. Give it a good listen.

A Better Son/Daughter by Rilo Kiley

It’s a bit of a confessional at times:

Sometimes in the morning
I am petrified and can’t move
Awake but cannot open my eyes

And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time

an anthem at times:

And sometimes when you’re on
You’re really fucking on
And your friends, they sing along
And they love you

but it’s the aspirational rally cry that really gets me:

But you’ll fight and you’ll make it through
You’ll fake it if you have to
And you’ll show up for work with a smile

And you’ll be better and you’ll be smarter
And more grown up and a better daughter
Or son, and a real good friend

And you’ll be awake, you’ll be alert
You’ll be positive, though it hurts
And you’ll laugh and embrace all your friends

You’ll be a real good listener
You’ll be honest, you’ll be brave
You’ll be handsome and you’ll be beautiful
You’ll be happy

Out of all the muck and the fear and the shake ups, I am trying to be a better person. I’m trying to learn and grow and do all the things you’re supposed to do so you can still walk and live and love in the face of life shattering events.

Cheers to Rilo Kiley for giving me a sing-along to help me.

December 7, 2018 0

Introduction to Extreme Parenting: 101

As my (max 12) readers know, this blog started out as a place to vent my frustrations and share my experiences navigating the world as a parent of a kid with multiple food allergies. “Crying Over Spilt Milk” felt like a clever and convenient pun because the bane of our allergy world existence is the dairy allergy. It’s pervasive and a pain the ass.

But in the last few months, the meaning of the blog title has shifted for my family and I. Shit has gone down. The world has toppled over sideways and we find ourselves in a parallel dimension that overlaps our previous life from time to time, but will never really run the same course again.

I debated about keeping the blog alive. I’d already gotten a little lazy about posting, but had heaps of ideas to discuss: I wanted to write about life in a zombie apocalypse with food allergies (pros and cons). I wanted to lament the fact that my daughter will have to bring her own snack bag when she gets drunk with her friends as a teenager (no late night poutine for you…cooler bags are cool at the club, right?). I wanted to humble brag about all my work-arounds as she moved into the world of kindergarten, and bitch about the false solutions that are offered to allergy kids in the public school world (clearly I have some anxiety building up about this).

I might still do those things, but for the time being, it all seems pretty frivolous and fluffy, which isn’t bad…just not where we are at the moment.

At the end of March, my daughter, then 2.5 years old, seemed to come down with a bug that got worse over a week or so. She threw up one morning, then she was fine for the rest of the day, just a little lethargic. Then she was tired and head-achey and whiney. Then she got wobbly. Then her hand began to shake. A trip to the ER and an assumption that I’d be sent home as a paranoid mom later, and we were on a wild, no fun roller coaster that included the diagnosis of a sizeable brain tumor, debulking surgery (to identify and remove as much of the “mass” as possible), a post-surgery stroke, paralysis on her right side, a permanent shunt to treat hydrocephalus, and now, the start of a long but pretty remarkable rehabilitation crusade. Plus…multiple food allergies. Like I said…world toppled over…parallel dimension…all that.

Clearly, I’ve over simplified things there, but that’s the trailer. We’re still living the series.

“Crying Over Spilt Milk” has come to mean something different to me in the last few months. It’s not a clever pun. It’s an idiom that sums up how our family is trying to cope with the way our lives have changed as a result of all this. Shit happens. Shit happens to good people. Shit happens to little kids. Shit happens that you cannot prepare for and for which you cannot assign blame. Crying over spilt milk is not only OK, it’s necessary. It doesn’t change anything, but you should definitely NOT not cry over it. Crying over spilt milk helps you accept what has happened and let go of what was in that glass. It’s gone…you’re not going to fill it up with the same milk (because who knows what was on that counter…that shit is messy). You just have to figure out what you’re going to refill it with.

This blog, from this point on, is about that.

July 19, 2018 0

Tag: brain tumor