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:

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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.

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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.

Sesame Seeds of Doubt

There’s a local-ish gourmet burger chain we go. They have a smattering of locations within an hour’s drive, but there’s one location in particular where we’ve eaten a handful of times as a family. We’re not there weekly or anything, but as noted in previous posts, our stomping grounds are limited and we are pretty damn cautious, so going somewhere a few times a year is a big deal.

I can’t remember how I found out they could accommodate my daughter’s food snaffoos. I think we’d heard that some places have dedicated fryers to accommodate gluten free consumer demand and I called to check. My daughter, like many kids, will happily eat fries as a meal. (Note: If you’re going to judge me as a parent for that, you can go away now.)

When I called, I found out that their burgers are all beef, no binders, and that there was also a gluten free, vegan bun. The angels sang and trumpets played and we took the whole family in, without an extra packed meal.

We followed our standard allergy family dining out protocol:

  1. Call ahead, talk to the manager, and confirm the options (if there are any). Be SUUUUUUUPER friendly.
  2. Let them know when you’ll be coming. Go early so they won’t be rushed or distracted with the order while prepping, and give them time to prep an area or clean stuff off for you. (Theoretically…gotta put a little faith in the fact that you’ve just told them your two year old could die and that they don’t want that.) Be SUUUUUUUPER friendly.
  3. When you arrive, ask again for the manager and let them know that you called ahead. Confirm the allergy list with them and let them know you appreciate any extra effort their staff makes to accommodate your needs. Show them your beautiful daughter (Do this only if she’s in a good mood and adorable. If she’s hangry and being a turd, send your partner with her to the bathroom until you’re seated.).  Be SUUUUUUUUUPER friendly.
  4. Thoroughly wipe down the table and chairs where your allergic kid will be sitting with three separate wipes. Accept the “What’s up with that?” looks from other customers and the “I was visibly cleaning that as you approached.” look from the server, with a shrug and a smile. Make a lame “it’s not you it’s us” joke if anyone is in ear shot or in danger of eye strain from rolling them so hard.
  5. When your server arrives re-list the allergies. Show them your beautiful daughter (who is now sweetly colouring and singing itsy-bitsy spider after your partner has slipped her a graham cracker to soften the hangriness). I also carry the list on a pocket sized piece of paper, along with all the terrible things that can happen, and the emergency procedure to follow if they do. Give this to the staff. I know they could write this down, but it makes me feel better knowing that I’m not relying on someone else’s attention span or handwriting. I also feel the consequences and the emergency procedure being printed, but not spoken (more than once) really hammer the point, in a deliciously passive aggressive kind of way.  Again, be SUUUUUUUPER friendly.
  6. When ordering, ask again about everything your kid is going to eat. Ask if the server would mind double checking with the cooking staff about any food being prepared, and to double check the ingredients on anything that’s premade. Continue to be SUUUUUUUPER friendly.
  7. When the food arrives, smile, look apologetic, and say “I’ve just gotta ask again…” and make sure your allergic kid is getting what they’re supposed to be getting.
  8. If all goes well, leave a good tip at the end of the meal. Ask to speak to the manager and let them know that the server was great, that the food was appreciated, and that the extra effort didn’t go unnoticed. Of course, wrap it up by being SUUUUUUPER friendly.  My feeling on this is that we want more places to be willing to accommodate and we want more people to not be dicks about it.  Make them want you back.

This may seem a little elaborate if you’re not in this mess on a day-to-day basis, but going out is an event for our kids and it’s worth the effort. Quality of life, don’t shut me in type-thing.

The catch, of course, is when it doesn’t work.  Or even worse, when you think it worked, but maybe it didn’t.

Let’s go back to the burger place. The first time we went, we were extra cautious and the experience was pretty new for our daughter. She was a little overwhelmed by the people, the bustle, and the thematic accents in the décor.  She mostly ate fries and a bit of the ketchup soaked burger. All was well.  The next time, she ate more of the burger, but who knows how much food actually gets INTO a two-year-old compared to what gets splattered AROUND a two year old.

The third time she ate most of the burger and all seemed to go well. Unfortunately, a few hours later she complained that her back hurt (daughter-speak for the sharp itchiness of a reaction as it pops up on her torso). She was fussy and fidgety and farting up a storm. Hives appeared. We dosed her up with antihistamine and things cleared up. We checked on her throughout the night to make sure nothing else flared up.

We went step-by-step through the meal in our heads. Did we touch her fries with our cheese-burger-y hands? Did her brother’s chocolate milk somehow splash across the table? We’d been so careful, but there’s always something you miss.

We chalked it up to good old cross-contamination and accepted that we weren’t going to get a definitive answer.  Everything should have been clear, but it hadn’t and we took the blame.

This weekend, we returned to the restaurant, followed the procedure, and placed an order with the usual apologies (I know we shouldn’t have to, but we do it anyway) and requests to double check.  This time, unlike the others, the server walked back over to us with a binder and showed us an ingredient list.

Duh duh dun!

Turns out, the gluten free buns are dairy free, but include egg. Not vegan. Not cool.  We’d gotten both super lucky and super unlucky the first few times we’d eaten there.  Lucky that our daughter hadn’t eaten more of the bun, lucky that her reaction was mild, but  unlucky that the server and staff we’d spoken with hadn’t check this binder, which was clearly laid out and intended to answer exactly this kind of question.

Playing devil’s advocate, it is possible that the ingredients had changed, that the binder didn’t exist last time (maybe they’d updated procedures), or that something else had gone awry.  I’ve worked in food service, I get it.

We thanked our server whole-heartedly for doing the extra checks and ordered the burger without the bun and fries for our daughter. The meal went well, everyone was happy and no hives appeared before bed time.

There was, however, barfing at 2am. Lots and lots of vomit.

And THIS is the hard part.

It is highly unlikely that my daughter’s impression of Linda Blair had anything to do with the dinner that she’d eaten, other than the fact that it came back up for a second showing.  There are bugs and flu and all manner of gastro-intestinal horror going around daycare and school.  My partner had been sick just days before. She did not have hives, or swelling, or any other symptom to indicate that it was a reaction.  However, she also did not have a fever, or aches, or diarrhea, or any other symptom to indicate that it was a virus. Whatever it was, it came and went, and she was starving and only a little groggy from the sleep disruption, within hours of it occurring. No antihistamines or epinephrine needed. (Thankfully!)

There is no evidence to indicate that my daughter came into contact with anything that would harm her at the restaurant. This time, the server had saved our butts by doing what she was supposed to do. She was thorough and attentive. We took every precaution that we could reasonably take.

But…the seeds of doubt are there.  We do not and cannot know that it wasn’t something she ingested.  Every time she vomits, our automatic assumption is that it’s a reaction.  If she gags while she’s throwing up (she’s really very bad at it and makes horrible noises and faces because it’s just a lot of work), we run for the epi pen and prepare to dial 911. We wake her in the night as we shine our phones on her back and belly and face to make sure there aren’t any hives, and that her lips don’t look swollen.  In practice, we have to assume that vomit is the first sign of something that can get bad pretty fast.

There is always, though remote, a chance that whatever caused her to purge her system, came from dinner. We thought we could be pretty confident with this particular restaurant, but there was a decent screw-up/oversight those first couple times, that we just learned about, that leaves a bad taste. In the words of every parent at some point: I’m not mad, I’m just disappointed.

We are well aware that we’re taking a risk when we’re out. Some allergic families don’t take that risk, but for us, it’s important to try.  The reality is that we have to trust others (to a point) and that from time to time, someone will let us down.  If we don’t try, then people will continue to say “then just don’t go out” and nothing will ever change for families like ours. It is also a reality that there are more and more families like ours out there. Gotta blaze that trail!

What I am pissed about, is that our list of places we can be at ease just got shorter.  We’ll likely go back to the burger place.  We know what to watch for and what to ask for (the binder!).  We have good reason to believe that the service and the food the last time we were there was on point. Due diligence was done and we got what we needed and paid for.

But it’s never going to be the same.

I’m always going to feel a little off and a little suspicious, and every other restaurant is going to have to that much harder to show me I can feel good feeding my kid there.  I’m still going to be SUUUUUUUPER friendly, because I want to reward restaurants and individuals that are even trying to accommodate our needs, but I’m going to dig deep into my nerd-dom to sum things up…

“The seed of doubt was there, and it stayed, and every now and then sent out a little root. It changed everything, to have that seed growing.”  – Orson Scott Card, Ender’s Game

 

Live and Learn

I met my partner when I was pretty young, and we’re now at a point where our relationship could vote and buy beer in Quebec. Going back to my teenage years, I was pretty blasé about relationships. There were butterflies and disappointments, but I’ve never really experienced real heart break. (I understand this probably seems a little out of context for an allergy blog, but I promise, I’m getting there…)

As a parent, the gradual appearance of allergy after allergy with my kid, and the likelihood of more to come, is stressful, but we’re getting the hang of it for the most part. Good shit happens, less good shit happens, and you manage a little better each time, as people generally do in life and love.

Last summer, after a year of fear and relearning to cook, and reshaping how I think about food, we took our daughter in for a baked milk challenge.

For those who are not in the know, milk protein changes when you cook it.  The longer you cook it, the less it is what it once was. A lot of kids that are allergic to dairy can consume products with heavily processed or well-cooked milk protein.  It can be a back door approach to sneak dairy into an individual’s diet without their system recognizing it as the “enemy.” It can help with building tolerance as well.  The process basically involves taking your toddler (or larger, older human) to the allergist, where you buy a magical muffin that has been prepared in a way that they know exactly how much milk protein is in it.

Note: I’m going to describe what we did here, but need to make sure everyone understands that this was just our experience and I’m going from memory and the science may change or doctors may do things differently. This was a BAKED food challenge and other food challenges are done differently. It’s all medically supervised and there is little (but not no) risk of a serious reaction. Went in informed and prepared. Do your research.

Over the course of a few hours, your allergic human (of any size or age) consumes first a crumb, then another, then a small piece, then another, then a chunk, then another, then another, then the rest of the muffin. These doses are doled out over the course of a few hours, at regular intervals, and you watch carefully for signs of a reaction.  If there are none, or nothing significant, you pass.  Your kids gets a diagnosis of “baked milk tolerant” and you get a schedule of food prep to follow.

A couple months of one muffin a day with X amount of baked milk protein.  Then you up it to two muffins for a couple months, then you start giving them stuff with boiled milk (lasagna, casseroles, etc.) for a couple months, then another couple months of consuming commercial foods with milk as the fourth or so ingredient.  After more than half a year of gradually increasing exposure to dairy of varying degrees of cookedness (pretend that’s a word), you go in to try another food challenge to see if your kid can now consume plain old dairy, which involves a different testing and follow up process.

Photo 2017-10-17, 9 05 42 PM
Would you like some puree of possibility mom?

A few points about the baked milk challenge:

  1. People are supposed to be in peak physical condition for these tests. Not like, one-handed push up condition, but not sick or sniffley in any way. For a toddler, I think one-handed push ups are easier than finding a day that they’re not even a little bit sick. Kids are gross and we had to reschedule the challenge several times because of colds, eye infections, etc.
  2. My daughter hates sweet things and the muffin is super sweet so kids will eat it. I spent four hours cajoling, bribing and wrapping bits of muffin in other food products. For the last half, I resorted to pulverizing it in a container of applesauce with promises of the park and a Peppa Pig marathon.
  3. Four hours in a waiting room with a two year old is a special kind of hell.
  4. I have never been so hopeful and terrified and miserable and overjoyed to be carrying out a pain in the ass procedure. I would do it every day for a year if it meant a pass.

Simply put, if our daughter passed this test, our world would literally change. Getting rid of a dairy allergy, even one terrible muffin at a time, would expand our lives in ways I can’t even put into words.  It was like the worst and best date ever. Tedious, but full of possibility!

After four and a half hours, my daughter was declared “tolerant.” I texted my family and friends and posted pictures of her triumphantly (ok, begrudgingly) eating the muffin/applesauce mush. I called my mom with tears in my eyes. I went home and baked two batches of the muffins, and worked all the phases of the regime into my calendar. We were so relieved and so in love with the possibility that in a year, we might be able to knock her top allergen off the list.

But…by 4pm the next day, in the midst of a back yard barbecue, just two muffins into her program, she got grumpy, then clingy, then barfed all over my husband’s shoulder.  Hives popped up on her belly a while later.  We dosed her up with antihistamine and kept the auto injector at the ready, but she’d gotten it out of her system.  She was fine, but we were heart broken.

I don’t know how else to put it, though I know it’s a little hyperbolic. A door opened, we took a look around, and then it shut.  I was gutted.

But, as many teenagers figure out, heartbreak is something you get over, and sometimes things aren’t really that different on the other side of it.  Really, we just had to keep doing what we already doing.  It was the fact that nothing was going to change that was upsetting.  Disappointment is a thing, but it’s a manageable thing.

Tomorrow, we are scheduled for another challenge: baked egg.

I am cautiously optimistic. Egg was not a huge reaction for her. Her brother was allergic to eggs, but he outgrew it by her age. Half the kids I know couldn’t eat eggs for a few years.

Egg would be good to work back in. Pancakes are never the same without eggs and vegan waffles just don’t work. (Seriously Pinterest…they don’t. Stop trying to convince me they do.) Vaccinations and flu shots would be a lot less stressful without the egg thing.  As mentioned previously, working scrambled eggs into our lives would make weekday dinners way easier. I’m all for team “egg tolerant” and I’m willing to put in the work to get on it.

But, I’m also a little wiser now. I’ve done this before and I know that allergies are unpredictable. I’m going to take things a little slower this time, be hopeful but cautious, and just wait and see how it all plays out.

In the immortal words of Wilson Philips, with their mom-jeans and embroidered vests of wisdom:

Don’t you know?
Don’t you know things can change?
Things’ll go your way,
If you hold on for one more day.

We’ll see how things go tomorrow (and the next day…the next day is important too…one more day and all that…).

 

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