Ahhh, Summer Vacation:  a time to sleep in, camp with the family, catch up with friends over a patio, and generally embrace the flip-flop life.  The kids are loving it:  they are sleeping in later than ever, cruising to the mall to catch the latest of the 9-million Marvel franchise movies, and heading to the basketball court to shoot some hoops.  They are doing exactly what they should be doing.

We kicked off Summer this year with two other families, and our first foray into Glamping.  Renting a ski chalet in the remote-yet-close Hemlock Valley, we were reminded yet again of what great friendship was.

I have known these families for almost twenty years, and I love them deeply.  We are a diverse bunch, but we are unified in our intentions together.   We are kind.  We are supportive.  We have each others’ backs.  We are mindful.  I can’t help but think this is the best example we can offer our children of healthy relationships, pursued with pure intention.

These two families have been absolute rocks of support through our journey together, especially A’s celiac diagnosis and our subsequent re-learning of cooking, nutrition, cross-contamination and all those fun little nuances that initially ate me up with anxiety.  Rather than criticizing, or declaring that we had to change to fit into the world, these families held us up through our journey of changing the world to make it safer for A.  Rather than judging us, they supported us in all that we needed to do to come out the other end calmer, easier, and more comfortable with mixed meals together.

I cannot thank them all enough for the ability for all of us to be truly vulnerable together: to experience true friendship and understand that they’ve got me, and that collectively, we’ve got this.

Soon, we will come together to give out our camping awards, as what kind of a weekend would it be without a themed dinner and a costume contest!?  I look forward to seeing them again over flip-flops and a patio, planning the next adventure together, as the kids grow another year older together, (and so do we!) and we spend another amazing weekend in the wilds of BC together somewhere.  It doesn’t matter where, truly:  as long as we are together!

 

We are on the eve of summer vacation, the kids are finished their last assignments, their marks are in for review, and they are looking longingly towards the lazy days of summer.

I am so proud of the boys, and all of their accomplishments this year:  ‘A’ started a new school, took on a whole new level of work load, met and made a completely new group of friends and mastered an independent commute to school.  ‘a’ worked hard towards his personal goal of making deeper and better connections at school, and succeeded.

I was terrified going into September.  I had no idea how to manage our new schedules, responsibilities, or how to juggle the split-screen of two separate schools, two separate school communities, on top of managing a family business.  Anxiety levels were extremely high.

It took most of the year to get into our flow, and to find our feet, but we all did it.  The commute settled down, lunches got made, homework was handed in (mostly) on time, and new friends were made.  We did it.

The kids swear they aren’t going to moan of boredom, that they are looking forward to the long lazy days ahead.  The promise, up and down.

I give them two days.

We are strong advocates for Celiacs.  We are vocal.  We explain, offer colour brochures from the Canadian Celiac Association, and we are happy to answer any questions.

Back in September, we took all of our information to school, to adequately arm A’s teachers and support staff with the knowledge of how to keep him safe.  90% of the teachers came back to us not only acknowledging they understood, but that it was important.  They made us feel as though we were heard.

Fast-forward to May, and a cafeteria full of rowdy grade 7’s that can positively smell their summer vacation.  They are rambunctious, full of beans, and seriously lacking in common sense.

The Science teacher has determined they will experiment with density and mass, and to do so has employed wheat flour and water among 33 x 12-year-old’s.  A advocated beautifully for himself and insisted to the teacher, an adult, that he could not be around flour, that this was not safe for him to participate in.  He could not touch it.  He could not smell it.  (flour stays airborne for a ridiculously long period of time.) He must not actively participate.  He said it three times, and was told to stay.  So he stayed to the side, and his partner was instructed to perform said experiment.

Did I mention they were a bunch of 12-year old boys?

A stayed dutifully to the side, eventually putting his head down on the desk to rest.  His partner gleefully added flour to water, and mixed it around, tossing it from hand to hand.

Guess what happened?

Yup, in that perfect 12-year-old-face-palm-storm, A’s partner lost his grip on the flour and water mixture, the mixture went flying and landed square in A’s face.

(I couldn’t make this shit up if I tried!)

A promptly experienced a gluten attack and was sick for the remainder of the day.

I called Science Teacher and asked him to consider treating A’s gluten intolerance like a peanut allergy – while not the same thing at all,  I was grasping at straws, trying to get A to at least be taken seriously.  I was literally left with no ideas on how to better illustrate the facts to a teacher, who incidentally, had seen A ‘glutened’ twice on his watch.

Incredibly, A appears to be the only Celiac in his school.  This breaks all rules of statistics, but there it is.  And so we must work extra hard to educate.  This Fall, I will request a face-to-face meeting with all of his teachers, in order to impress upon them that this is no joke.

Science Teacher apologized, but A and I were just left shaking our heads, muttering: “He just doesn’t get it, does he?”

Of all the…..

 

 

I am near tears with anger, frustration and more anger again.  We found a restaurant, my husband and I, and we discussed with the owner our frustration at our inability to go out for dinner with our son due to his celiac diagnosis.

She got it.  She really did.  She was sympathetic, she made all the right noises, she boasted of her kitchen prep methods, and her separate cutting board.  Her food was delicious, and naturally halfway to GF anyways.  She sparked a hope in us, a glimmer that she would take care of us, that she would get it.  She would.  Did I mention the food was delicious?

No. She. Fucking. Didn’t. Get. It.

We took a chance, tonight, to go out together as a family.  We went to our local North Burnaby Greek family restaurant, brimming with hope and the promise of a paid-for -not-made-for-meal with our children.  A chance to feel like every other human that thoughtlessly walks into any restaurant on any corner and orders anything, regardless of dietary, allergy or lifestyle considerations.

Appies were incredible, and we ordered double.  The kids devoured everything that was put in front of them.  They killed it.

And then came the mains.

A’s roasted lamb shoulder came plated with fries, that were previously established as NOT from a dedicated fryer.  I turned to the server and politely and respectfully asked that it be re-done, and simply not RE-PLATED.   We were willing to wait.  We got it.  We were willing to wait for and pay for good and safe food.

Fuck.

Fuck, fuck, fuck.

My son got halfway through the meal when I spied an errant fry (from the previously aforementioned NOT gluten-free fryer) and although I quickly stabbed the fry, the damage was done.

I flagged the server, who flagged the owner, who came over and reiterated that they were super safe and super understanding. I reiterated that I had SAID SPECIFICALLY NOT TO JUST RE-FUCKING-PLATE the food.

Then, she got mad.  She looked at me and said that she would pick up our dinner but that we were to not come back, and that we were no longer welcome as she couldn’t accommodate us.

Let that sink in.

We got kicked out of a family restaurant due to DIETARY CONSIDERATIONS.

Seriously?

And yes, I am still mad, and still WRITING IN ALL CAPS.

I am furious.  I am worried about my son, and his reaction.  I am already terrified about approaching new restaurants and new locations, knowing inherently that NO, they DON’T GET IT.   And they never will.  And that even if I advocate for my child, and verbalize, and vocalize and reiterate until I am blue in my face, it still may make no difference.  And he will still get sick.  And he will still open himself up to major additional long-term health risks and concerns.

And we will still end up rushing home as a family, in order to get him to the appropriate facilities and liters of water to flush everything out of his system.

I wonder if we would have a human rights complaint if we had insisted on paying.  As it was, we were made to feel like such fucking pariahs that we simply left.

Fuck.

The words are leaving me, yet the anger remains.  In the meantime, I need to go make a cheese quesadilla (GF, of course) for my son who just left his dinner in the bathroom of the biased restaurant who kicked out a young family just because they fucked up and made my son sick.

 

 

We hit another stumbling block the other night:  we sat around as a family and watched Bohemian Rhapsody – an incredible story, a love letter to Queen, and a small window into what it meant to be set apart (in many ways).   My son identified with being different on the level as only a 12-year old can: he associated feelings of  being separate and singled out as it related to his Celiac disease.  He turned to me and said in a quiet voice; “Mom, sometimes I just want to sit around with the guys and share a pizza.”  He took the story of Freddy Mercury and related to it at his level – he keenly felt his apart-ness, and his different-ness, and in that moment, it hurt terribly.

We have these ups and downs all the time.  Sometimes he is comfortable in his diagnosis, other times it rears up and smacks him in the face.  I have searched for a peer group for him to join, to show him he is not alone, and to provide him with a forum to share stories, feelings, discuss new research, and just 100% belong.  Sadly, the teenage set appears to be grossly under-represented.  There is a ton of information available for the newly-diagnosed, and there is a regular meet-up for adults, however the in-between is a vast chasm of silence.

And so I will try and change that silence; to bring a voice, a place, an opportunity for Celiac teens and young adults to go for information, gathering, chatter.  I will try to create a space for my son to have a voice and a place to feel 100% the same.

And to sit around with the guys, and just share a pizza. (GF)
Stay tuned….

A very close friend remarked tonight on my sense of identity.  She had been over for the afternoon, making sense of a clutter and volume that I could not alone, and she made an interesting comment.

She remarked on my strength of identity.  As a person of the Jewish faith, she always had an inherent sense of identity.  Her faith and culture and history and everyday were so intertwined, that she could not help but always feel a firm sense of who she was/is.  And she remarked that I was one of the few Gentiles she knew that possessed such a strong sense of similar identity.

We had been going through my things, trying to de-clutter, organize, streamline and otherwise un-complicate my life a little bit more.  She was amazing.  She was gentle, and kind, and paid respect to the process.  I couldn’t have done it without her.

My challenge with the clutter is that every piece, (well, virtually every piece) told a story.  Every item, every thing could be traced back to either an adventure, an experience, or a piece of history that shaped and formed me today.

And I take comfort, pride and strength from that.  I have a unique story, with a unique upbringing and have been afforded experiences that many will never see.  I draw strength from my roots and my narrative.  My identity.    I am so thankful for the experiences I have been given, and so proud of the unique story of my family that I want to honour it.   I celebrate the moments my children are able to eat dinner at the same table as their great-great-Grandparents, that they rest their feet on the chest of their great-great-great-cousins’ Steamer Trunk that came to Canada on 1860 from England via New York, and later by rail to Vancouver and on to a Cattle Ranch in Nevada.

I celebrate the opportunity to share and pass down my identity to my children.