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.   

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. 

Perks of the Job

There are a lot of shit moments in my new world as a caregiver. My career, as it was, is on hold. There are trying times doing emotional, psychological battle with a three-and-a-half-year-old. There are long, boring waits in medical centres and rehab facilities and drawn out, anxiety-inducing waits for test results at home while we’re trying to just get on with our lives. There is always an undercurrent of fear and frustration and anger at our family’s situation and what we all have to give up and work around in the reality in which we now, and forever, find ourselves.

But, and it’s a big but (cue the immature giggles at me saying “big butt”…I spend a lot of time with kids), there is also a new pace of life and a flavour of love that we would not have if our world had not been completely shaken up this time last year.

I’m going to be self-centred and zoom into my caregiver role in particular here. If this role had not been forced on me, I would be spending this afternoon fretting over a deadline, bitching about the client that was pushing for twice what they paid for, and then frantically packing my laptop into my bag, forgetting the critical power cord in the office as I crammed myself into my car to fight highway traffic to collect the kids from daycare and school. We’d jam food in their faces before rushing them to extra-curriculars, snipping at everyone along the way, sandwiching homework and home reading in just before bed to do it all again the next day.

While that is all relatively normal, and it’s not bad, it’s also a life that feels less relevant than it used to. Because someone needs to be here, and available, managing appointments, and therapy and chemo, someone is. That someone is me and after a year, that old life feels pretty distant. I’m home and the days have to be flexible with wiggle room and room to rest, so the rat race pace is less intense. Mornings and afterschool routines are more relaxed. We schedule less and roll with it more.

My work as a caregiver, and it is work, expands to fill all the time I can give it, but there are also moments and tasks that just have to be quiet and filled with something else. I may be on call all night, but I have an hour here and there, when my daughter is with a grandparent, or watching a movie waiting for chemo, when I can just sit and read. My day-to-day life is not spent at the computer, or on conference calls, so I enjoy sitting and writing and I relish actually talking to people again.

I’m always stressed and anxious, but I also have a therapist prescribing gym time and painting to preserve my mental health. Self care is no longer a luxury, but a requirement. If my body fails, I can’t do my job, so I’ve made getting in shape a priority for the first time in my life and am sticking to it. I can’t wrap my head around an actual piece of art, but I’m picking away at painting an old doll house because I need something, anything, to do that is not involved with my daughter’s care and medical needs or family administration.

I am not going to deny that our situation, while challenging, is a hell of a lot easier in all this than it could be. Another day, I’ll dig myself into the layers of privilege we have in dealing with this whole mess that make it possible for me to not work at anything but the care of my daughter right now. (Short version: Holy shit, we are lucky we live where we do and were born into a place of comfort and education.)

I’ve spent more time with my daughter in the last year than I spent with her in her first two years of life. My relationship with my partner and my son are deeper and more grounded than I ever thought possible, because we’ve had to build different connections and ways of communicating. We spend our weekends and time together so much differently than we did before because that’s the way it has to be. We don’t try to pack too much into that time. Our situation has slowed us down, and there are definite benefits to that.

As a caregiver, as any caregiver can attest, your time is not really your own. You’re never really off duty. You never really relax. You are the day shift, the night shift and the emergency room shift. You are the repository for all the important information and the shield that the shit hits on its way to the fan. I don’t drink any more because I don’t want to be half in the bag in the ER trying to coax my daughter through a CAT scan. My partner is absolutely willing and capable of doing this, but it’s my job and I’m stubborn and I’ve got the front-line experience. I don’t want to drop the ball.

This is not a “poor me” situation (though of course I wouldn’t choose it). What I am trying to accept and fight for (with myself), now that we are out of crisis mode (hopefully for a while, ideally forever), is to still be myself in amongst all the other things. I’m trying to maintain the parts of me that I like and that I have control over.

I don’t know if my career will ever be what it was. It certainly won’t be what it could have been. My family life, another aspect of myself, will never be what a lot of other people have or what we thought it would be. I can’t control what has driven those changes.

What I can control, and am learning to relish, is the time and space between the caregiver tasks. I don’t feel so guilty about time to read, or to doodle, or to write escapist garbage, or to savour a coffee and the odd cigarette on a sunny day. I’m learning, slowly, to not ask for or apologise for that time. I’m trying to just take it. There aren’t a lot of perks to this job and unpaid interns bring home more bacon. Might as well make the most of it.

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.

We like to party.

We like to party…we like, we like to party.
I apologize for invoking the Vengaboys, but even after 18 years, I STILL hear that song every time someone mentions a party. It’s terrible, but catchy as hell.  You’re welcome for the ear worm.

It’s true though, we do like to party. We just have to manage things a little differently than we used to.

Or, from time to time these days, though I hate to admit it, we avoid them.

When we do bail, it’s generally a combination of situational factors (e.g., number of people, if there are kids, if the place is going to be filthy with pizza and ice cream, if there are little old ladies with good intentions trying to give our kid ice cream), and location (e.g., an Italian restaurant, an indoor playground smeared with years of pizza and ice cream residue, a cottage or camping event where emergency services may be unreliable).

We’re not any less social than we used to be. Life is busy, but we love the people in ours and we want to actually see them in a social capacity.

However, sometimes it feels a little overwhelming.  Layered in with the factors above, is how much effort we feel like putting into prep and surveillance.

The prep, I’ve talked about before. (See Sesame Seeds of Doubt with regards to events at restaurants, and Excursion Essentials for going pretty much anywhere else.)

The surveillance is something all parents do when we’re fresh to the job and helicopter-y, but it generally fades as kids get bigger and more independent.  With our son, we’re at a point where the right party, at the right house, allows us to release him into a toy-filled attic or basement along with all the other kids and it’ll all turn out ok. Our daughter is two and a half so she’s gaining a little independence, but usually wants to stay nearby, and we’re ok with that because the eight-year-old kids aren’t quite babysitting age (though some of the eight-year-olds we know are waaaayyy more grown up than some of the 38 year-olds we know).

In general, we’re pretty relaxed and will team up to check on the kids, bring them in line if needed, feed, water, change, etc.  However, in certain crowds, at certain events, we have to kick things up a notch.  Not surprisingly, when food comes out, our roles…intensify.  While we haven’t gone full secret service yet (those ear piece communicators are expensive), we lock eyes, exchange hand signals for placement in relation to our charge, and establish clear sight lines around the room.

Once a cheese board or a bowl of dill pickle chips (yup…dairy in those) hits the coffee table, our daughter has a shadow: Someone to cut her off if she approaches the snack table. Someone to scan the room for used napkins or those tempting tiny plates that inevitably get sprinkled all over side tables and the arms of couches. We also scan for orange Doritos residue, chocolate or cookie crumbs, fruit that looks harmless but has been served near yogurt dip…you get the picture.

We do it as subtly as possible, but it’s a delicate balance between trying to keep an eye on her, attempting to maintain adult conversation, and tactfully executing a wipe down of any kids (or cuddly adults) who might make contact with the little one or things she’s likely to touch. If she ever goes into show biz, she’ll be well accustomed to the “starlet at a bar with a body guard” routine.

We hope it’s not creepy or weird or intrusive for others at the party.  We don’t want to dictate how parties are thrown, or what’s there, or how others have to celebrate when we’re around.  We don’t want people to groan when they find out we’re coming and that they have to accommodate us. We also don’t want people to make a huge deal out of it when we have been accommodated. I want to make it clear that we ALWAYS appreciate the good intentions of people making the effort, and the work it takes to do so. But…it can really feel like you’re putting people out when there’s a big “todo” about separating and substituting, or when kids are told “You can’t have that today because R is here.” We want our daughter accustomed to real life and real situations. But, man can it ever suck the fun out of a gathering when it becomes the focal point of your night.

HOWEVER, we are exceptionally fortunate, and New Years Eve this year was a heart busting reminder of that. We have amazing friends who, for several years now, have hosted a two-stage party where the kids get to celebrate a ball drop at 8pm and the grown-ups celebrate in a second shift once the kids (and some partners) have gone to bed.

Without really bringing it up, without fanfare, and absolutely without eye rolling or groaning, this amazing group of people (hosts, guests, and kids) quietly sorted out a snack menu that was completely safe and completely satisfying.  There were fruit and veggie trays, and home made bread. We were asked to bring some dip to contribute. Friends brought guac and nachos. More friends showed up with locally made dairy-free tomato pizza. The hosts went out and found cashew-based “cheese” that was safe (only peanuts are an issue) and really really good.  Packages were casually brought over for a quick inspection as needed. It wasn’t a thing.  It just happened.

We went to the party, prepped and ready to break out our dark suits and hand signals…and promptly put that shit away and simply raised our glasses. When the kids went to bed, the grown-ups busted out the dairy (and maybe a little more booze), but while our daughter was there, we literally had nothing to worry about.

It may seem like a small thing to them, but the fact that it was thought of and done without hoopla or hullabaloo, or highlighting again and again what was being done because our daughter was there, was EVERYTHING. As I type, I’ve got warm, happy tears in my eyes because our friends are fucking fabulous.  We love them dearly and it was so so so good to start the new year with the feeling that things were indeed, fine and dandy.

So, as we ring in a new year where the world in general is feeling less than warm and fuzzy, I leave you with the following message, originally put out by the Vengaboys, but dedicated to the people in our lives who so clearly have our backs:

Hey now, hey now, hear what I say now

Happiness is just around the corner

Hey now, hey now, hear what I say now

We’ll be there for you

You know the rest. Happy 2018!

It’s like that.

I wasn’t prepared, sitting at my desk at work, eating left-over  shepherd’s pie and scarfing cold coffee…to start crying.

I WAS going to suck up my lunch break watching trailers for movies I don’t get around to seeing until they’re on Netflix.  Instead, I fake sneezed and withdrew to the ladies to try and de-blotch my eyes.

I’d come across this video  from www.foodallergy.org.

I’m not connected with them in anyway, but for obvious reasons, when I fall into a research/panic hole about all this stuff, I often end up on a path that leads to their resources.

This video wrecked me.  This is it. This is what it’s like and will be like for my kid and my family. These kids are my kid at various stages of development, and these parents have the same fears and necessary protocols and feelings of guilt and anxiety that we do.

I used to be a pretty chill parent (relatively speaking), but it’s hard not to let the type-A terror demon loose when half of what the food guide recommends your kid to eat, could kill her.  I cried because these families get it, and we don’t really know anyone in our circle who really does. It’s not a lack of empathy or interest. It’s just a lot to take in and work into your life, and like many other conditions, it’s hard to fully grasp unless you’re in it. I know I never did.

If you want a little slice of what it’s like to be in the head space of a parent with a kid who has life-threatening allergies, this is it.  The creepy stranger that lurks in the back yard where your kid plays, the boogey man that’s hiding behind every corner…Parents and kids have different ways of describing the feeling where everything is suspect. I can usually roll with the notion that “it could be worse”, but it’s always possible that it couldn’t be, and that’s what makes it hard.

To those who’ve shared their experiences in this video and others like it, thanks! It always helps to know you’re not the only ones.

NOTE: FARE (Food Allergy Research and Education) has a whole “Food for Thought” video series that’s worth checking out.

Crying Over Spilt Milk

Crying over spilt milk is what you do when your kid fountain vomits and busts out in hives like she’s been swaddled in poison ivy.  A few stray drops on a table from a friend’s sippy cup or someone’s coffee, and her body explodes. Sometimes it’s ok because she didn’t actually ingest it. But, sometimes you cry…because it’s fucking awful.  Dose her up, grab her bag, be thankful you’re five minutes from a great hospital.  So goes life with food allergies. Never a dull moment.

Two years ago, food allergies became a “thing” in our lives; dairy, egg, peanut, fish, and shellfish. It really could be worse.  As far as these things go, we’re pretty lucky and a lot of people deal with many more complications and many more allergies. But, it’s always there and most days there are ridiculous, or daunting, or scary, or infuriating moments that need to be dealt with.  This blog, admittedly, is part of that process for me.

Like a lot of people, I’m trying to figure this allergy shit out.  I’m far from alone in this, but sometimes you just gotta share.  Fair warning, I’m learning as I go, and learning comes with frustration.  I may get salty.  I like swears. (They’re therapeutic and sometimes nothing else will do.)

I am not, in any way a qualified professional, so please don’t take anything I say as sage advice. I’m a parent, with a toddler who has some scary food allergies.  She has an older brother, who doesn’t.  My partner and I are doing the best we can.  I’ll keep you posted.

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