Tag: parents

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HGTV and Me

Posted on by katyleask

Today I woke up thinking about brain surgery. It’s not a normal thing to contemplate when you first wake up on a grey, February morning (unless you’re a neurosurgeon), but today I did.  I actually woke up to the sound of grinding, revving engines and sewer work in the street outside my bedroom window. It was close to 6am, definitely before 7am, and the sound had worked its way into my dream. Something about waiting and being in a waiting room. We’re really familiar with waiting rooms. We spend a lot of time in them. The sound had worked its way into the dream as an annoyance within the dream itself. Something was supposed to be happening in that waiting room and there was this irritating whirring in the background. Even in the dream I was like “What the hell is that? Shut that thing off. We’ve got things to stress about here.” When I opened my eyes, pissed off in the dark, the feeling of the waiting room lingered…the pale yellow walls, the harsh fluorescent lights, the smell of worn chairs with a decade of old spilled coffee worked into their fibres, mixed with the smell of industrial strength floor cleaner. I thought about calculating the number of hours we’ve spent in this particular waiting room, which led me to think about the longest “session” we’ve had in this particular waiting room. I thought about my daughter’s brain surgery. The first one. It was special.

Not surprisingly, brain surgery takes a long time. Recovery takes a long time. Everything takes a long time. And that means waiting. Lots of waiting.  As a parent, it can be difficult (to say the least) to figure out what to do while you are waiting. It’s not like you’re killing time at swimming lessons. You clearly have a lot on your mind, and need distraction, but it’s also difficult to focus on anything. You’re obviously in a pretty delicate state, so what you focus on is also important. Because we had a few days notice that our wait time was approaching, friends and family gifted us with books and magazines and crossword puzzles and snacks. We had our daughter’s bag packed for the hospital and we had our own bag of tricks for the wait. It was, after all, a full workday (predicted 8-10 hours) of fear and rage and helplessness. I wish that was hyperbole.

So, what do you do while a team of 10(ish) very qualified professionals open up and tinker with your kids’ control system?

You sit in a waiting room with other parents and family members of kids who are also under the knife. Everyone is anxious, but not everyone shows it.

Some of the people beside you are tense and tearful because their very little ones are in for a five-minute surgery to put in ear tubes. This fear is valid. Anesthetic is always kind of scary and surgery is surgery, despite the calm and breezy manner of the medical professionals involved in same day procedures. We’d been these parents twice already. In fact, the day our daughter’s more serious symptoms started to manifest, her father had been sat in this same waiting room for her older brother’s second set of ear tubes. That day, I’d stayed home with our daughter, because she’d vomited in the early hours of the morning and couldn’t go to daycare.

Some parents are there for their teenage child’s appendix removal. Or maybe their budding jock is getting a torn ligament repaired after a sports injury.

Some people, like us, are there because their kid could die and this surgery is the thing that will hopefully save them. Everyone is in the same waiting room. We didn’t realize this when we were in for our son’s ear tubes. You assume that the “big stuff” gets its own waiting room. Incorrect.

It’s another one of life’s lessons in empathy. Look around the room, any room, and someone there is likely to be going through a field of shit.

Whatever their reason for being there, most people are on their phones. My husband and I, for example, were trying to read on ours.

I was in a book club (that would prove to be an unbelievably supportive and important presence in my life throughout this period, and in all the days since). We were reading, for the first time in a cohort of contemporary and historical fiction fans, a dystopian sci-fi novel. This is generally my escapist bread and butter. It was gloomy and slow, and I didn’t really like it, but I’d suggested it to the group and it was something to focus on that had nothing to do with our situation. Reading kept us from crying. Word puzzles and Sudoko didn’t work so well. They didn’t divert enough thought power to really phase out of our situation.

When I wasn’t reading, I was drawing. Nothing concrete, nothing focused. I was doodling lines. Lots and lots of long, fluid lines, in different colours that flowed and overlapped and merged together. I drew until my hand cramped, took a break to read a bit or stretch my legs, then I’d draw some more. I kept the same drawing in progress over the next week or so as well, as time allowed. It’s not a good or interesting drawing. I’m self-taught so I’ve got no technique whatsoever and my skill set is limited, but drawing is the closest I get to a meditative state. I know I passed a few hours that day marking the page, thinking that each line drawn was a connection being made, being saved in my daughter’s brain.  I’m no neurologist (I use this line more frequently than you’d think), but I know that the brain is capable of rebuilding and rerouting, even when it has been devastated. As the pen tip scraped across the paper, as I retraced those lines to darken or thicken them or to change their direction, I thought of the pathways sending signals back and forth in her little brain and counted each line drawn as a new highway constructed. It makes no logical sense whatsoever, but it made me feel like I was part of that team, trying to save as much as they could of who she was and what she would be capable of after the surgery. It made me think less and gave me something to do. The other part of my brain, that needed more diversion, listened to and watched the TV screens mounted in the waiting room.

There’s something consistent about TV screens in hospital waiting rooms that you don’t notice until you spend a lot of time in them. There is always at least one screen playing the Home and Garden channel.  It is an ever-present and innocuous feature of these kinds of waiting areas.

Don’t get me wrong, I’ve always loved HGTV. It started in the early 2000s with shows where neighbours redecorated each other’s homes. In the years that followed, it became a source of inspiration and heated debate, made more interesting because my partner and friends had our own homes with updates and repairs and renovations to be dealt with. Watching the shows fueled my homeowner dreams and desires and admittedly, from time-to-time, indulged the less savoury, more judgey and envious aspects of my personality. On business trips, I’d arrive at my hotel after a long conference day, kick off my shoes and binge watch house flipping renovation shows, tsking and shaking my head at obnoxious colours and sighing over luxury tubs I felt I deserved more than the home owners I saw on the screen.

HGTV is still a land I’m happy to visit, but it means something different now.  HGTV, like certain hues of green, or blue, or peach (the studied, soothing colours of medical institutions) lets me know that I’ll be settling into a stiff vinyl chair with a paper cup coffee for at least an hour. It tells me I’ve got some time to kill while my kid sleeps on industrial cotton-poly sheets, before Peppa Pig or the Wiggles go back on. It says we’re back in hospital and that we’re going to be there for a while.

I’ve given more thought than a reasonable individual should, to why HGTV is so popular among the demographics that frequent medical institutions.  Here’s what I’ve come up with.

  1. It’s not Treehouse, or Nickelodeon, or any other kid-focused cable channel that runs the same 8-10 syndicated shows on repeat, day or night. In a children’s hospital, you WILL be watching day and night and your kid WILL want the t.v. on all the time and with all the other shit they’re going through, it’s not a battle you’re willing to fight. As soon as the opportunity presents itself NOT to watch another episode of Paw Patrol, you need something you can rely on. Hospital television set-ups do not lend themselves to channel surfing, and in your depleted state, almost any decision, even what to watch, can be hard to make. In short, it’s not a kid’s show, and it’s a decision made for you that you don’t hate.
  2. It’s nice to think of homes. Not necessarily YOUR home, because you may be a long way from it (geographically or metaphorically), but home, as a concept, is comforting and aspirational. It’s nice to think, “Maybe I’ll repaint the trim when we get home. You know, freshen things up after all this shit.” It’s nice to think of home as a place you will get back to and that you have some control over. Homesickness is a thing during long stays in an institution. Home is, at once, an idea, a destination, and a solution.
  3. Home and garden shows are relatively “safe.” They are good shows for conversation or diversion, without lighting any emotional or political fires. While presenters and participants are occasionally obnoxious, home shows don’t generally present anything controversial. The visuals distract from the hosts’ inane banter and the topics can usually be judged subjectively from a point of “personal taste” over political leaning.  House hunting and sales shows aren’t as rowdy or riveting as sporting events, though sports highlights are probably next in line for acceptable hospital programming. The News is the last thing you want to watch when your life is already scary and depressing and overwhelming, and sitcoms piss you off because, who gives an actual fuck if whichever “Ross and Rachel”-type couple ever get together…your child is lying there full of drugs and tubes and needles.

In HGTV land, that walnut-stained chevron pattern looks stunning in that kitchen. That cream sofa looks great, but it’ll last a few months, tops, with a great Dane in the house. Holy crap, that ridiculous square footage is cheap in Austin, Texas. Anywhere parents assemble in a pediatric hospital will have a home improvement, or flipping, or house-hunting show on. Strangers will strike up conversation about DIY home improvement, or sit quietly on their phones, eating greasy hospital muffins while it plays in the background.  Everything else in your head is heavy and hard, but on the Home and Garden channel, none of it really matters and you know exactly what you’re going to get. Comfort in a paint can. Diversion with shrubbery. As good as it gets, given the situation.

 

 

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The Words We Choose, Uncategorized

At least…

Posted on by katyleask

“At least…” is a slippery little sentence starter. It’s not so devious in the middle of a sentence when it’s used to talk about a tangible quantity of something, such as: “I’ve eaten at least half of that Costco-sized bag of potato chips.” But it’s also one of those qualitative expressions that, when worked in right at the beginning, can come across a few different ways.

It’s often used conversationally with the intention of expressing a degree of gratitude or to acknowledge some degree of good fortune. In this usage, it’s often delivered with a sigh and a shrug: “At least you’ve got your health.”

It can also be used with a smirk and a raised eyebrow to throw some ruthless shade. “At least I’VE got a job. At least SHE can get her ass out of bed to walk the dog in the morning.”

We’ve often heard it used to compare our situation with those of other kids and families in the medical world.  In general, people are trying to make us feel better.  “At least it’s not malignant. At least you’re out of the hospital. At least she’ll be able to go to school.” It’s all definitely on the gratitude side of things. We have, objectively, been in some pretty dark places since diagnosis.  It is good to not always be there. We are grateful for progress and healing and all the love and support that has gotten us where we are.  We like to acknowledge this.

But (talk about a loaded sentence starter…) I have chosen to omit “at least…” from my vocabulary. (As a sentence starter…I can still brag about eating at least a half a bag of chips.)

As a next step and in specific reference to situations like ours, I’m going to go ahead and ask others to maybe consider doing the same.  Here’s why.  It’s not nice or helpful to shit on someone else’s situation to make yourself or even someone you love, feel better.

Here’s the thing I’ve learned while existing in some pretty dark places. When you’re in one of those dark places, you feel alone. You feel like the world is falling apart and unfair and you are angry and sad almost all of the time.  You inevitably run into other people who are in their own dark places.  Sometimes their dark places overlap with yours and sometimes they look and feel very different, but the common thread is that none of them are good. They are all dark.  No one wants to be there. No one chooses to be there.

Over the last couple years, we’ve met and gotten to know people and situations in several different hospital wards, from the Pediatric Intensive Care Unit (PICU) to oncology, to brain injury and rehabilitation. I can say, with absolute confidence, that no two experiences have been alike, but they are all shitty. I call them (not originally) “shit sandwiches.”  It’s what they serve in the dark places. Exclusively.

I can only speak to our personal experience in a children’s hospital and dealing with our own child’s condition, but I feel this applies to a lot of different situations. Bear with me.

At some point, everyone gets a “shit sandwich” to eat. Some people get several and some people are forced to eat them on and off throughout their whole lives. Our shit sandwich came with a pediatric brain tumour and a stroke and severe food allergies to work into the mix. It’s a meaty patty for a shit sandwich and it’s hard to swallow. However, I have to acknowledge that our shit sandwich also came with some fancy toppings. It came with financial stability and accessible health care. It came with family and community support and compassionate places of employment. It came with a side of friendly and communicative health care practitioners, and we got to add our own special sauces of education and past life experience that helped us wrap our heads around our situation as it was happening. Our shit sandwich is BIG, but there a lot of toppings on there that make it digestible.

In the dark places we sometimes frequent, we meet people who might have subjectively less meat on their sandwich; a smaller tumour, a concussion, or a single, less complex diagnosis. But not everyone has the fancy fixings to help each bite go down.

They might live hours from family or friends for treatment, or their child’s losses may be more likely to be permanent. Their condition might be more treatable, but more likely to return. Missing work might mean losing a job, with the resulting financial turmoil, as a side to the terror and anguish of watching their child fight to live and function.

It’s tempting to try and compare shit sandwiches…since we’re all eating them at the same table.  “At least…” is an easy way to do that. “At least our daughter got her speech back. At least she has vision in one eye. At least she can go to school. At least she’s happy and doesn’t remember life before all this.”

It’s a good thing to be thankful and it’s even better to celebrate the wins, but “at least…” pities and sneers at the misfortunes of someone else because it is always a comparison with something that “could be worse.” My life sucks, but yours sucks more. It casts shade on someone else who is already sitting in the dark place, eating a shit sandwich. I don’t want anyone using my daughter as their shitty baseline for comparison (“At least my child can use both their arms. At least my kid doesn’t have a brain tumour.”), so why would I use someone else as that baseline for comparison myself?

There is no sympathy, no love, and no support in “At least…” as a sentence starter. It is inherently judgemental and comparative, and there are certain things in life that you just cannot compare, and that you should not judge.  If your goal IS to be judgey…then have at ‘er, but the people chowing down in the dark place already feel all manner of judged.

You may find yourself with an unpleasant meal in the dark place at some point in your life, and you will feel empathy for those around you, because you can feel their pain and their fear, even if it isn’t the same as your own.

Your “At least…” may be some else’s reality, or it may be their reality in the future. They don’t need to be reminded how bad it tastes. Even if they can’t hear you say it, it becomes an undercurrent in the culture around them. It’s pretty obvious when something in your life is someone else’s worst-case scenario, and you never know when you might be served the same dish, or one that’s even more unpalatable.

The day before my daughter’s diagnosis, I stood in my parents’ kitchen, spewing off my own “at least…” about her food allergies. “At least it’s a manageable condition. At least schools and other parents acknowledge it and make accommodations. At least it isn’t cancer…it could be worse.”

“At least…” tempts fate in the most terrible way. If you’re the type to knock on wood or covertly toss salt over your shoulder, stay the fuck away from “At least…” Statistically speaking, we all end up sick, or hurt, or with some kind of disability at some point in our lives. Don’t unnecessarily put yourself (or those you love) in the pocket of hubris. You are not above or beyond any of it.

If you want to say something positive to someone who is dining on shit sandwiches in a dark place, just say it. Be real. Be genuine. Be in the present.

“You have a strong family.”

“She is doing well.”

“I can see his progress.”

“I’m proud of you.”

“It’s so good to see you.”

“This fucking sucks, but you’re doing everything you can.”

That’s the hot sauce and the fizzy drink to help it all go down. People in the dark place are taking things moment by moment, day by day. Don’t bring the past or the possible future to the table, because diners in the dark place know that there are no guarantees and no gains that can’t, potentially, be lost. It’s exhausting to always try to be positive and looking back or too far ahead can be overwhelming. We’ve got our hands and plates full already. Just help us get the current serving down.

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Perks of the Job

Posted on by katyleask

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.

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Uncategorized

It’s like that.

Posted on by katyleask

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.

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