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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