That’s a so-called wrap

11256468_757402374375414_817857624_nA girl’s gotta eat.

Even when it’s specialty foods delivered frozen in giant boxes stuffed with ice packs and Styrofoam noodles, a girl’s gotta eat. Even when some of the food items are as appetizing as the Styrofoam noodles, you know what a girl’s gotta do.

Abby gets these foods shipped to her as supplements to her diet, which is severely limited in protein due to her metabolic condition, tyrosinemia. The companies that concoct these food substitutes – faux pasta, faux rice, faux hot dogs, faux ever young – they do the best they can, given that the kids with this condition can’t even eat tofu. Imagine a child unable to eat tofu! See? Every cloud has a soy-free lining.

But sometimes these foods do lack, shall we say, authenticity.

Take that hot dog, for example. I’m not certain what it’s made from because we long ago ditched the package we ordered, never to be sampled again. It was as though someone had been instructed to devise a non-meat, non-soy hot dog based solely on a description of what a hot dog ought to taste like. This imagined hot dog was then assembled in a refurbished smelting plant in Belarus. And finally, a project supervisor, offering input for input’s sake, said, “Needs more aftertaste.” That’s what a tyrosinemia hot dog tastes like.

They’re not so much foods as approximations of foods. However, having never tried real meat in her life, or a real bagel for that matter, or real cheese or real scrambled eggs, Abby is usually content with these substitutes, despite their wonky taste. Except that hot dog. Blech!

At the same time, she enjoys cooking and the exotic flavours that can transform potato and cauliflower, for example, into aloo gobi, a delicious vegetable curry.

So when the genetic clinic organized a one-day cooking course in Montreal featuring some of these specialty products – how to goose up the grossness, if you will – we signed Abby up. It was also a chance for her to meet a few other kids her age with the same condition.

I joined her for the class and learned a number of tips myself, including this: if you put a bulb of garlic in a solid container and shake it violently, not only will all the cloves come apart but also the cloves will lose their skins. I don’t know what you’re going to do with all that naked garlic now, but MIND BLOWN!

I was one of several dads at the event, which was good to see at a cooking class, I thought. Very forward-thinking, very involved, a reminder that nothing enhances the pleasures of learning quite like the feeling of self-righteousness.

Our chef-instructor was lively and engaging as he showed us how to make guacamole, risotto, custard and a breakfast wrap, all using low-protein specialty products. The wrap included, you guessed it, the hot dog.

Another dad and I got to talking about the products, including that hot dog, which we both agreed was very much not at all good. But we said these things in hushed tones so as not to influence our children, to whom some day we may have to say, “Hey, how about a ‘hot dog!’ Yum!”

“Have you tried the hamburger?” he asked me, grimacing.

“I don’t find the hamburger too bad,” I said. It’s a portobello mushroom burger bound together with wheat starch and industrial-strength aftertaste. “Abby doesn’t like them at all, but my wife eats them.” (She’s been eating them, I found out later, because she hates the idea of throwing them away.)

“Remind me to never come to your house for a barbecue,” said the dad.

When our chef and his kid helpers finished assembling the wraps, they divvied the portions among the participants. Abby and I took one each. I smelled it. Eek. I took a bite…

“It’s good!” said Abby, who’s used to this stuff.

“Not bad,” I said. It was a lie. But the wrap had been so enthusiastically prepared and was such a great example of how Abby and her fellow tyrosinemia patients can be creative with their limited foods, I didn’t dare put it down.

Instead, I shoved the remainder of the sample in my mouth and chewed with the determination of someone eating eyeballs for cash on a reality show – fake hot dog, fake cheese, fake egg, fake tortilla, real nausea.

I looked up. The other dad was chewing too. We made eye contact. We didn’t say a word. We just kept chewing.

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About rossmurray1

I'm Canadian so I pronounce it "Aboot." No, I don't! I don't know any Canadian who says "aboot." Damnable lies! But I do know this Canadian is all about humour (with a U) and satire. Come by. I don't bite, or as we Canadians say, "beet."
This entry was posted in Family - whadya gonna do?, It Really Did Happen! and tagged , , , , , , , . Bookmark the permalink.

30 Responses to That’s a so-called wrap

  1. This made me laugh, including the oh-so-terrible “faux ever young”. I went vegan over the last year and after trying many substitute foods, decided I would rather just starve to death than eat another faux anything. It’s the first time in my life when vegetables are the highlight of a meal. And really, any food that’s not tan…

    • rossmurray1 says:

      There was no reason or excuse for that pun, so thanks.
      I happily eat vegetarian but am not vegetarian. Mr. Middle Of The Road.

      • pinklightsabre says:

        Yeah, for what it’s worth, I love the diet of the vegetarian but also love the meat, on occasion. Hot dogs, sausages – I get a bit queased-out by them. Reminds me of the name ‘not-dogs.’ Sounds like a fun time with you and Abby.

  2. Carrie Rubin says:

    It’s difficult for the whole family when a child requires a special diet. We have an extended family member who spent years on the ketogenic diet for seizures. I was so impressed by her parents and the child herself who worked so hard to maintain it, just as you are doing with your own child. I love that there was a family cooking class for it. Kudos to you for taking her. (And for maintaining your sense of humor through it!)

  3. markbialczak says:

    You are a great, great, great day, Ross. Cheers. And bless you, Abby, for your great attitude toward tackling life with this alphabet-busting challenge!

    Careful, though, pops.

    When I was in college, I visited my roommate in The City for a summer break weekend. His father was a chef at a famous Manhattan restaurant, and to celebrate my arrival, dad concocted a fabulous French meal. The appetizer was escargot. My Long Island teenager’s palate had never. My upbringing said shaddup and eat it, which I did without chewing, one swallow each to all three, which I found slimy and awful. Smile. Nod. No ewww face! My host was so thrilled he piled three more on my plate.

    • rossmurray1 says:

      Ha! Classic. My father-in-law tells a similar story about his grandmother and peas. He hated them so ate them first. “Oh, Ronny, you need more peas!”
      Thanks, Mark. And Abby rocks.

  4. Paul says:

    That’s pretty neat that there is a gathering and some instruction on preparation. There’s strength in numbers. From a business point of view, your daughter’s special dietary needs is not a money maker because of the small number of potential customers.That is the problem and why there is so little in the way of options and quality – and I bet the cost is high too. As much as I think capitalism is one of the better economic options, it has it’s weaknesses and serving small special needs groups is one of those weaknesses. As a dialysis patient, I know the feeling. there are only a few players in the world for manufacturing dialysis machines and the technology advances at a snail’s pace – not enough demand and profit to justify big R and D budgets. I am grateful for what does exist and try to make the best of it, with the sure knowledge that if half the population required it, the advances and options would be much greater.

    No doubt it is a challenge finding good food for Abby that she likes. You’re a good Dad Ross – travelling with her to find options and opportunities. Keep up the good work!

    • rossmurray1 says:

      We are lucky that the Quebec government covers the cost of the food (up to a limit on a specific brand but we never hit it). Her medication is also covered, though we are having to fight with the insurance company for a new supplement she requires. But this is small potatoes compared to a friend in Florida whose friend has this condition. We are lucky. But you are right. Products are discontinued all the time because there’s no demand. There’s an overlap between tyrosinemia and the more common PKU, which helps. (Helps?)

      • Paul says:

        Yes, the overlap doubles the market size. The same happens to a certain extent with dialysis patients and diabetics wrt diet. To me in a capitalist economy it is good and right that governments support the minority groups to keep quality of life as equal as possible. I am glad that Quebec acknowledges and assists in your needs.

  5. “Nothing enhances the pleasures of learning quite like the feeling of self-righteousness.” Bingo! I’ve been looking for something to get tattooed (not really) on my arm and I think this statement encapsulates my life perfectly.
    Abby certainly sounds like she manages these challenges like a champ. I can only imagine how robbed she must have felt growing up with friends eating whatever they wanted and she was stuck eating fake hot dogs and whatever grass got shoved in her mouth on the rugby pitch.

    • rossmurray1 says:

      It’s all she knows, but she also knows she’s missing out. Rarely complains, though. It’s her badge. She also really, really enjoys the things she can have; we go through gallons of sweet chili sauce.

  6. You sound like a great dad, and your daughter sounds pretty wonderful, too. 🙂

  7. Liz Hott says:

    You’re a great dad, Abby’s lucky to have you beside her through this. It must be tough for all of you guys. Go Abby! And go Ross!

  8. Having to play the parental poker face in the face of culinary foulness for the well-being of your baby. Well done, Ross.

  9. ksbeth says:

    just a nod and a chew. you guys are heroes. and not fake hero-ish sandwiches, the real thing.

  10. Dina Honour says:

    Abby doesn’t need a soy-free lining because she’s got you guys.

  11. franhunne4u says:

    A wonderful thought that so many Dads took the chance to bond with their children even more.
    I really feel for the loss of life quality every human has who cannot just eat ALL kinds of food. A friend of mine is “just” lactose intolerant, a colleague of mine never gets any cake at work – he suffers from fructose intolerance – and normal sugar is part fructose. Another colleague has brought up two daughters who could not be fed on animal-sourced-food. But they came around after several years (maybe after puberty?) …

    • rossmurray1 says:

      Allergies and intolerances, I understand, can work themselves out. What Abby has going on, though, is at the metabolic level, so until gene therapy goes mainstream, she’s stuck with it. Fascinating condition, in many ways. It’s been regulated the past 15 years or so (just prior to Abby’s birth) with a drug that was originally a herbicide! The noticed a change in the cows eating the grass and next thing you know… science.

  12. To have and to hold, for richer, for poorer, with real food or synthetic.

    I paraphrase but you get it.

  13. Rebekah says:

    Hi! I’ve read several of your blog-posts and have a quick question for you, PatientWorthy.com is an online news publication based in the U.S. that caters to patients with rare diseases and this month we’re hoping to highlight and raise awareness for Tyrosinemia specifically. If you would be interested in sharing a part of your and your daughter’s story with us as an article or via a phone interview please let me know 🙂 You can email me at becky@mypatientstory.com Thanks! -Rebekah Horsting (Content Manager)

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