Tag: parenting

At least…

“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

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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Game Face

In my youth…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It does not mean that we are not shaken.

It does not mean that we do not fall apart.

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

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

This means we have to tag team.

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

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

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

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

 

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