Tag: coping

Tips

Making the Most of the Cards You’ve Got

Posted on by katyleask

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.   

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Game Face

Posted on by katyleask

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.

 

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