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.

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.

 

Music Therapy

Again, it’s been a while since I’ve posted. Life has been less dramatic, but pretty action packed with a veritable bunt cake (I’m hungry) of both post-trauma stuff and standard family stuff.  It’s been:

  • Two parts normal, everyday routine: school drop offs and pickups, extra-curriculars, groceries and laundry, negotiating what’s appropriate to wear as the season changes, frantically searching for gloves and hats and mitts and lost stuffies, packing into the car because we’re generally at least five minutes late for almost everything. This stuff is good. We appreciate this stuff now…even the parts that are a pain in the ass.
  • Two parts post-pediatric stroke rehabilitation: twice weekly occupational therapy and physical therapy, therapeutic play at home, finding tricks and toys and apps and kids to play with. This stuff is going exceptionally well and my daughter is moving and happy and loves her “friends” at the rehab centre. She is also in desperate need of kids to play with. We’re working on that. She needs good, genuine play. It’s better therapy than all the rest.
  • One part medical appointments: orthotics fittings, seating clinics, endocrinology, developmental pediatricians and new physicians. And MRIs. Ugh, the MRIs. The tumour is a scary beast in the background, but for the time being, it’s on MONITOR, not TREAT, so we try to focus on the rest.
  • One part coordinating: therapy and appointments and life around it all.
  • One large and looming and ever-present part fear: fear that all this work will be for nothing, fear that the joy of just living our normal lives will go back on hold, fear that it won’t be ok in the end because the remaining tumour will persist and grow and push into all the important things in our daughter’s head and our lives. This particular fear permeates everything…just a bit, but enough to cast a funk when you least expect it.

We’re trying to figure out how to manage it all. Therapy, of course, would be good, but we haven’t made that happen yet. There are support groups and forums and resources aplenty, but navigating them is time consuming and finding the right fit is hard.  Thanks to our recent adventures in the sprawling world of medical trauma, we belong to so many different clubs! (So popular!): food allergies, cancer (It’s not malignant but it sure as hell shouldn’t be there, and is therefore under the umbrella of oncology.), brain tumour, pediatric brain tumour, stroke, pediatric stroke, visual impairment, acute brain injury, hemiplegia, hemiparesis, physical disability, chronic life threatening illness, families and siblings of all of the above. Terminology and grouping of conditions and diagnoses vary, so the search is overwhelming to say the least. We haven’t quite found a community where all of these things intersect. (And they say you can find a community for ANYTHING online…)

While we’re still in search of the right professional help (aren’t we all?), one tool in our kit to cope with all this is music. We don’t make it, especially not me (not a musical bone in my body)…but we love it, we always have something on, and there has always been a pretty defined soundtrack associated with events in our lives. My son, from an early age, bought into our enthusiasm and established his own playlists far from the standard kiddie tune parade. My daughter, well, we fought a little less to keep her from the hard core kids music (I’m looking at you, Music Together.) because she was our second and we’d already fallen off our high horse. More recently, as we moved through all this chaos, music (especially, to our torment, her love of The Wiggles), was something she could connect to and find comfort in, even in the very worst of circumstances. So we’ve just rolled with her three-year-old tastes. We’ll focus on indoctrinating her into the Canadian indie scene later.

The point, is that music is a good place for us, as it is for a lot of people, and throughout this particularly shitty phase of our life, it’s been a therapeutic place as well. Of all the apps I’ve got on my phone, Spotify has saved my sanity more than any other. Sigor Ros sat with me in waiting rooms and on rocks outside hospitals as I cried (with happiness and despair). The Wiggles irritated the crap out of me, but I am undeniably thankful that they soothed my daughter through terrifying nights, shitty procedures, and fucked up sensations. DJ Shadow captured my anger and dared anyone to even think about talking to me when I really just needed to hit something.

I’ve been struggling with what to write on this blog for the last while, feeling the need to process everything but being completely overwhelmed by it all. Where do I start? Not at the beginning. I’ll get caught in the details and never get out.

I figure the music that gets me through, or at least sometimes feels like it gets me, is as good a place as any to make the page a little less blank and get writing again. Also, as a music lover reaching out into the universe for some footing, maybe some of the songs I highlight here (good, bad, or guilty pleasure) will resonate and connect with someone else.  I won’t go through the whole song and I’m not going to analyze or review it. I’m just going to drop it out here and let you do with it what you will.

Good tunes can do good things. Here’s hoping my music therapy helps to make someone else’s day less shitty when they need it.

Music Therapy #1: Your Heart is a Muscle the Side of Your Fist, by Ramshackle Glory

I don’t know anything about Ramshackle Glory. I dabble in punk (teen of the pop punk 90s here), but I’m superficially familiar at best, and honestly, this song was spit out of a generated playlist. I don’t know how the algorithm works.

It’s a little bit peppy and a decent bit dark. It pushes me forward and it also makes me feel like I’m not alone with the feeling that being positive (what everyone tells you to do in these situations) is hard fucking work. The day this came on wasn’t a terrible day, but it wasn’t a good one either, and I just needed it. I need it pretty regularly.

Dalia never showed me nothing but kindness

She would say: “I know how sad you get.”

And some days, I still get that way

But it gets better

It gets better

It gets better

Sweetie, it gets better, I promise you

And she’d tell me

Your heart is a muscle the size of your fist

Keep on loving. Keep on fighting

And hold on, hold on

Hold on for your life

Keep on loving and keep on fighting. It’s work, but as any sporadic gym goer knows, it’s a hell of a lot easier to maintain than to make a comeback.

 

 

 

 

 

Introduction to Extreme Parenting: 101

As my (max 12) readers know, this blog started out as a place to vent my frustrations and share my experiences navigating the world as a parent of a kid with multiple food allergies. “Crying Over Spilt Milk” felt like a clever and convenient pun because the bane of our allergy world existence is the dairy allergy. It’s pervasive and a pain the ass.

But in the last few months, the meaning of the blog title has shifted for my family and I. Shit has gone down. The world has toppled over sideways and we find ourselves in a parallel dimension that overlaps our previous life from time to time, but will never really run the same course again.

I debated about keeping the blog alive. I’d already gotten a little lazy about posting, but had heaps of ideas to discuss: I wanted to write about life in a zombie apocalypse with food allergies (pros and cons). I wanted to lament the fact that my daughter will have to bring her own snack bag when she gets drunk with her friends as a teenager (no late night poutine for you…cooler bags are cool at the club, right?). I wanted to humble brag about all my work-arounds as she moved into the world of kindergarten, and bitch about the false solutions that are offered to allergy kids in the public school world (clearly I have some anxiety building up about this).

I might still do those things, but for the time being, it all seems pretty frivolous and fluffy, which isn’t bad…just not where we are at the moment.

At the end of March, my daughter, then 2.5 years old, seemed to come down with a bug that got worse over a week or so. She threw up one morning, then she was fine for the rest of the day, just a little lethargic. Then she was tired and head-achey and whiney. Then she got wobbly. Then her hand began to shake. A trip to the ER and an assumption that I’d be sent home as a paranoid mom later, and we were on a wild, no fun roller coaster that included the diagnosis of a sizeable brain tumor, debulking surgery (to identify and remove as much of the “mass” as possible), a post-surgery stroke, paralysis on her right side, a permanent shunt to treat hydrocephalus, and now, the start of a long but pretty remarkable rehabilitation crusade. Plus…multiple food allergies. Like I said…world toppled over…parallel dimension…all that.

Clearly, I’ve over simplified things there, but that’s the trailer. We’re still living the series.

“Crying Over Spilt Milk” has come to mean something different to me in the last few months. It’s not a clever pun. It’s an idiom that sums up how our family is trying to cope with the way our lives have changed as a result of all this. Shit happens. Shit happens to good people. Shit happens to little kids. Shit happens that you cannot prepare for and for which you cannot assign blame. Crying over spilt milk is not only OK, it’s necessary. It doesn’t change anything, but you should definitely NOT not cry over it. Crying over spilt milk helps you accept what has happened and let go of what was in that glass. It’s gone…you’re not going to fill it up with the same milk (because who knows what was on that counter…that shit is messy). You just have to figure out what you’re going to refill it with.

This blog, from this point on, is about that.

Food Appreciation: Starbucks

If you were in your local Starbucks a couple weeks ago, and there was a vaguely woman-shaped parka (it was -30 Celsius OUTSIDE), sweating and squinting at food products, sometimes cursing, and snapping photos…it was me. Well, it might have been me. Maybe it’s a thing kids do these days…I’m pretty out of touch.

You see, I’m on a mission for readily available snacks on the go. Fun snacks. As I’ve mentioned before, our current options for snacking expeditions are limited, so I’m trying to be proactive.

At this point, we’ve got our daughter convinced that an alternative grocery store down the street is a “destination” for treats.  Fortunately, right now, she is way more into chips than sweets, but we walk by a couple restaurants, a bakery, a café, a gourmet chocolate shop, and a gelato place on the way. I’m not sure how long the novelty of going to a grocery store that smells like incense and fermented food products will hold up.  Her poor older brother, who is not allergic to anything, looks longingly at all the places we pass and tries to be subtle (as only a 5-year-old can) about when we can take just him out for a real treat. He’s a sport about it and doesn’t want his sister to feel bad, but he knows he’s missing out.

We also, at some point, would love to travel with our kids. We’ve never even braved an overnight in a hotel. As it stands, to do so would involve planning and schlepping all our daughter’s meals for each day, along with all the snacks. Other than a grocery store (which IS a possible solution), or a few places that prep fries in a dedicated fryer (see Food Appreciation: New York Fries), we don’t have any reliable places to grab food, especially in unfamiliar territory. It’s doable, but it doesn’t feel like it would be fun.

So, I’m looking for a big chain, that’s widespread, with consistent product offerings and practices. I started with the biggies, but McDonald’s is waffling and taking steps backwards in allergy practices. Everything in there is covered in dairy or egg anyway, so it’s not an option for us, but in terms of supporting those who are only allergic to peanuts, Mick Dick’s has really kicked them in the shins lately.

Others, like Swiss Chalet/Harvey’s have some general policies and lots of information available. They even have some specific products that could technically be consumed by someone with my daughter’s allergy set, but individual franchises aren’t necessarily obligated to follow anything, and we’ve literally been laughed at when asking (after driving 20 minutes out of our way based on website info) about cross-contamination, so in practice, it means nothing.

I did however, have a glimmer of hope at Starbucks the other night.  I was, admittedly, solo and scarfing down a very non allergy friendly pretzel dunked in caramel and chocolate, but I took the opportunity to survey their prepackaged selection of goods. I was not overwhelmed with what I found, but I wasn’t necessarily disappointed either.

As noted above, I was lurking around the shelves at a Starbucks in a bookstore, squinting at packaging with poorly contrasted label lettering, in dim coffee shop light. As a general point, prepackaged food is a good place to start. The ingredients are listed and there’s less risk of cross-contamination through handling. If the place that sells cake pops for my son and caffeine for me, ALSO sells snacks the little one can pick out and enjoy, I’ll count that as a win.

Here, are my findings:

Smoothies and Juice – They’ve got a good selection. Because I’m a pretentious yuppie parent, my kids still think juice is a treat.  The smoothies are helpful. (But I forgot to take a picture. It was really hot in there.)

Beef Jerky – Not sure how easy a sell this is to a preschooler, but despite her largely vegan needs, she’s a carnivore at heart. Could do. Maybe I’ll tell her it’s bacon.

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Beef Jerky

Apple Chips – I thought these would be good. They aren’t. I don’t know how they screwed them up, but…Ugh. Neither kid would keep them in their mouths, let alone chew and swallow them.

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Apple Chips

Kale Chips – I don’t care how many times Pinterest tells me Kale chips can be “soooo good.” These ones tasted like socks. Most other brands also taste pretty bad.  And I really WANT to like them.

Marmite-flavoured Popcorn – I’m willing to try these, but haven’t yet. I enjoyed the toast version of this in my backpacking days though, they should be pretty savory, and salt IS my daughter’s favourite, so there’s potential here.

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Popcorn – Marmite Flavour

Sweet Potato Chips – This works. Plain chips of most kinds usually do.  Not exciting, but they exist, which is good to know.

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Sweet Potato Chips – Plain

Flavoured Potato Chips – What?!?! YES! Flavours without whey powder?!?!! Hallelujah! Still…it’s chips…but it’s not PLAIN chips. Whoot!

And of course, being Starbucks and all, the obvious offering here is coffee. Rich, bitter, delicious, invigorating, but generally frowned upon in the hands of a preschooler. I need the boost, she already rocks and rolls all night and parties every day.

In conclusion, while I’m not excited about the options, and a meal is definitely out of the question, in a pinch, Starbucks might just work. I’d much rather support the amazing local, home spun cafes in my area (and any area really), but a family’s gotta do what a family’s gotta do.  I’ll take the kids for a walk this weekend and see how the experience goes. If nothing else, next time we’re stuck en route and the snacks run out, or maybe someday if we’re travelling, well, pretty much anywhere in the developed world, Starbucks will be there with…something.

 

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!

There’s no food in that food.

Tis the season to be grateful. Falalalala la la la la!

I am indeed grateful for many things in my life, but this season, I am particularly and surprisingly grateful that some of the food we buy is not…really food.

Sometimes, as an allergy parent, a near or complete lack of natural food products is a big old win. If there’s nothing real, there’s nothing to trigger a reaction.  If it’s good and processed, it might be processed enough that the body doesn’t even recognize it anymore.  I’m not saying it’s good all the time. I know carnauba wax is NOT something one should consume in any great quantity.  But…sometimes…it’ll do the trick.

You see, my five-year-old was PUMPED to make a gingerbread house. My two-year-old, fuelled by her brother’s enthusiasm, also had visions of candy construction dancing in her head. But…I am not a gifted or patient baker. Life is currently pretty full of life-type stuff, and I had no idea how to make vegan icing harden enough to be used as adhesive. I do have a vague memory of my mother fusing gingerbread together with some kind of melted sugar concoction, but a significant part of that memory is actually her swearing as she burnt the crap out of her fingers while the pieces slid apart. In my memory, whatever she used was the candy equivalent of hot glue…my crafting arch nemesis.

I was determined to find a solution that was safe for my daughter, without being a huge pain the ass. There had to be something.

And there was! Was there ever!

After a month or so of calling around natural grocery stores, pestering alternative bakeries, and scouring the depths of Pinterest for a vegan gingerbread house that I could and would actually make, the clouds parted and a miracle occurred.

On a windy, miserable day at ToysRUs, as I debated between Thomas the Tank Engine and Paw Patrol advent calendars (three days into December…because I’m cheap and they’re on sale if you buy them late), I glanced to the left and found this magical answer to my problem:

cof

It was peanut free, dairy free, egg free, the icing and candy balls were pretty much just sugar with some weird binders and oil, and it totally blew my five-year-old’s mind.

I don’t know if the kit was strictly vegan and it’s definitely not advertised as such, but a good close look through the ingredient list confirmed it. There was little to no food in that “food.” Juuust unnatural enough not to be a threat. Score!

The results (sneak peak in the lower right corner there) were a little more abstract than the box, but it was super fun!  Got a pile of safe candy from the grocery store, some old stale marshmallows (for snow on Hoth that turned into clouds on Takodana), and went to town.

img_20171210_125634.jpg
Fully assembled.
Ready to get started.
Ready to get started.
Tada!
Tada!

Happy holidays everyone!

 

 

 

 

 

Small victories.

Tonight some friends were visiting from out of town with their kids and everyone was meeting at a local dive bar that daylights as a family friendly restaurant. It’s a place we generally avoid, but we’re trying hard to navigate social situations with food.  It’s becoming a bad habit to avoid them.

So, I picked big brother up from afterschool care, popped in at home to pack little sister’s Yumbox and grab colouring books, and walked over to the restaurant, anticipating meltdowns, or reactions, or confrontations with servers.

But…it all just worked. The kids coloured and little sister ate her food. Grownups talked loudly over the kids and drank mediocre beer.  It was all very civilized.  There was a moment of tension when big brother’s food arrived and sis wanted some chicken fingers and fries, but she accepted the explanation that they would make her sick pretty graciously.

It was a good night, a nice night, and one we no longer take for granted.  Thanks universe!

Baked Egg Challenge – Update

More than a month ago, I posted about our daughter’s upcoming baked egg challenge, and I’ve just realized that I’ve left all five to ten of my readers dangling on the edge of their seats, eagerly awaiting the results.

So, the results: 

No results for you. Test didn’t happen.  The day of the booking we got all prepped, got through the scratch test with the nurse, got into the doctor’s office, and my daughter coughed.  The test was delayed and I was sent packing feeling kinda guilty that I hadn’t recognized the slight post nasal drip (that she ALWAYS has) as a cold.

Two weeks later, we’re booked for a make up and BAM! Another cold.  Bah! Why is my kid always sick?

Next available date…March!

So again, we wait.  We keep on trucking.  My parent instinct is telling me she wouldn’t have passed it anyway at this point.  Maybe it’s good she has a little more time to outgrow it.  Maybe that’s just self preservation, but it makes me feel less frustrated so I’m sticking with it.

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