Now Here This and July 4th

I went to the musical Now. Here. This.   It's a small show with a big emotional punch-- Thomas Merton the religious philosopher of the early 20th century had a theory that we should try to center ourselves in the Now. And be Here. and focus on This.  -- (and yes four crazy funny smart folks made a musical about this concept)

 It's a wonderfully big idea for three words.  Enjoy the moment, the present company, the now.

Not a new idea, but one that was packaged in a way I understood.

  I spent the week trying to slow down, breathe and see what was in front of me. It helped my perspective-- of different we all are, and that we can share the moment, but in our own ways of being and visions--which brings more to the table.

What --you didn't think I'd forget about food did you? Of course there's a table, preferably a dining table where all of us, with our different worlds and our different desires can come to the fore.

And sometimes we have to see that present-- the world where we are helping and sharing and being there for each other-- and see the world from the varied perspectives of those around our tables...

Happy July 4th--be it fireworks and friends or the beach and family or Uncle Vanya and a peaceful city (like me)

Vacation

Well, we're planning a vacation-- so I'll be away from the blog.  We are taking a cruise, which I find is really solid for a food allergic family.  The staff are attentive, and make special dinner; the cross-contamination issue is thoroughly understood-- the salad bars on these ships allow no spillage of the egg slices into the beans... and the lunch buffets always include a carved plain meat and vegetables-- plus there's a burger and fry bar. (and that's the only thing they fry in the fryer)
 dessert poses more of an issue-- there's jello, and I usually bring chocolate and things-- but better than having to bring or cook all the food.
We;re lucky we found this kind of trip-- and have been to Alaska, St Petersberg, Tallin,Caribbean Islands, Mexican ruins, Tivoli Gardens, and Bernuda.
can't wait to see the underground caves...

AARGH

The pirate's curse title of this post is because today I was reminded again, that every day is like starting over.  Even with friends who know about your kid's allergy--and have for years-- they have to be reminded, you have to provide food, and all is not copacetic when it comes to parties and BBQs and days in the country.
AARGH

I'm just venting to my people here who get what I'm saying and feel what I'm feeling. What's the name of that movie where every few minutes the world stars anew, and all old information and memory is gone...
that's what it felt like today...when friends forgot about providing the safe food they usually do, and it just felt crummy.

My child is about to return home from college and some friends and I were chatting over this long holiday weekend as the question came up: while he w  as away, did we eat all the foods he can't? It's a good question -- so why do I say it in hushed tones.  Did we or didn't we and if we did --was it wrong?   For years we have all adhered to strict avoidance, kept foods out of our homes, not cooked certain items. So when the barn doors are opened-- do we run?  I think there's a certain amount of guilt accompanying eating foods your kids can't. Foods that you may have yearned for. Foods that were family traditions. Foods that easy to find in a train station or easy to pick up after work.    We've all had that moment: the wouldn't- it -be -so -easy. But we all stop and regroup. And hope our food allergic kid didn't see the wistfulness in our eyes. Because they don't get the choice.  They have to do the right thing every minute of every day, so it feels wrong for us adults to wish for something different for ourselves.     So did we eat foods my kid can't eat-- yes. We went out to dinner for Thai. I made spaghetti at home.  Did we feel guilty-- not exactly. But certainly we felt odd, out of practice in some way, and we found what we had always believed in, mantra like: it's not the food that makes the meal it's the people around the table. 

FOOD ALLERGY AWARENESS WEEK May 13-19!

FAAN and FAI merge!

Great news that FAAN and FAI will merge-- I mean why not have one premiere organization that we can all support: FAAN can be the education and information branch and FAI can find funds to support research and legislation. We should all be singing with one voice--especially in Washington and with State regulators. So I am all on board.


And aside from this news, i hope you all are doing well. It's time for summer plans and camp decisions and that means health forms and long talks with camp dining services and the like.


Thinking about food does take up much of our time, and as the latest FAAN blogger mom notes-- it's worth the smile on our kids' faces.
But let's acknowledge too that it's time consuming and stressful. Not only do we have to think about what to bring, but we have to do the shopping, the preparation, and the planning for the event itself.


I had this realization again, recently. Since my son's at college and dealing with his allergies on his own, I've not been in the thick of it. But I went for a visit and had gotten tickets to a baseball game. I knew the French fries were safe, as were a couple of the bratwurst/hot dog items--but I know my son isn't that comfortable trying new items at a ball park. So I found a supermarket near my hotel and bought cold cuts, and cut up veggies-- which were great for the ride home from the game, since no kid --nobody really--wants to eat carrot sticks when everyone else is eating nachos...


But this one little trip to the grocery reminded me, again, that food allergies are a full-time job. For us, for our kids. It helps to know we're not alone, and that we don't have to re-invent the wheel each day. But we should also remember to reach out for support, step back and get some perspective, and try not to feel isolated by the everyday work of it all.


And--coming soon to this blog-- RECIPE BUILDER-- after all this time cooking without the Big Eight, I am ready to help build easy, family friendly recipes for other families. Email me at info@foodallergyworks.com or leave a comment for more information.

Food Allergy Luncheon

Isn't great to get together with friends WHO GET IT!


-what a relief to be with people who get it, who believe you, who understand that the slightest bit can be harmful, and who are full of positive energy, and recipes, and tips on how to get through the rough spots.


At the amazing Food Allergy Initiative lunch (www.faiusa.org) I saw a moving video of teens talking about their allergies and how they'll feel when they go away from home:
One cute guy said: I'll have better things to worry about than my allergies-- like my classes. 
And one young teen said: I'm so lucky to be a girl-- we get to have a great fashion accessory to carry our Epi-Pens and Benedryl...
Is that the best!



And this week I spent time with friends who both have sons going off to college-- and we talked about what to bring, how much to text in the first week, when to cry (and when not to) as well as
ALLERGIES: 
I told them I send bulk items from Amazon-- this week I sent Enjoy Life CocoLoco Chewy bars --and to get  free shipping I added a bubble gun.  It's Spring--what kid doesn't want a bubble gun!
 And they told me that the new Rice Chex cereal is good, and I told them that the blue Peeps have milk-- FYI only the yellow chicks don't-- 
THEY GET IT-- and it buoys me up every time.


So whether it's a support group with regular meetings; reading a food allergy blog; going to a conference or a luncheon or just calling a friend-- food allergies are much more manageable with  people who get it.  




PS:
 Reaction alert -- Kingsmill Brown Rice bread-- even tho the listed ingredients were fine, and when I called the customer service line--they confirmed all ingredients.
   I  have to say the Kingsmill/PaneRiso people were great on the phone.
The woman read all the ingredients, including trace; looked up what kind of "caramel coloring" they use (dairy free and all natural) and even looked up what the cellulose is (made from denatured tree bark....)
Son was fine-- but won't eat that bread again.

victory!

In my city it's summer-- should only be spring, but it's summer with a high of 82 and humidity-- means lots of flowers and people in shorts-- and gets me thinking of summer foods-- and my goal to learn how to make a good granita (crushed coffee ices like in Italy) and fruit sorbet. I am looking for good recipes-- and easy too-- I am not very skilled at desserts- but maybe I'll have better luck with icey things than baked goods.

And, a small victory-- the mini marts at my son's college will now start selling plain rice cakes--a favorite snack of his.

Why is that a victory-- because before now these marts only sold "popcorn' or 'caramel' flavors-- the popular flavors. But my son advocated, and the dining services people listened and worked on it and found a supplier to provide these 'less popular' plain brown- rice cakes that are safe for him.

I'm curious if these rice cakes will be less popular, knowing that healthy snacks and whole grains are all the rage--for only the best reasons-- among everyone, college students included.

Holiday Time --Again

It’s Monday morning and you’re doing the final shopping for ______________(insert a Holiday here )and your –mother—aunt—cousin-- calls and says “I’m making strudel for the holiday dessert and I know that Johnny is allergic to nuts, but it really doesn’t taste good without them, so I just wanted you to know.”

You hang up the phone –and (circle one)

A. Scream B. Cry C. Laugh D. Shake your head E. All of the above

All of the above is the correct answer – and then you get the baking mix from the cupboard and read about how to make a strudel.

This is a typical holiday conversation for a food allergic family. We’ve all been there, and we all know what it feels like to NOT be able to make that special family recipe for a holiday meal. Well, as Loretta famously told Ronny in Moonstruck “Snap out of it!”

This is our life.

And this is especially true around holiday celebrations when ritual meals, steeped in tradition , are the standard fare. Food allergies can cut us off those traditions, memories—whatever you want to call those remembered moments from our past-- and not allow us to make those dishes.

But we can’t. And neither can my mother or my Aunt Sadie. Instead, I can make a menu that does not include allergens—and no one will know the difference. I can ask Cousin Pesky to bring a green salad—since that would be ‘easier’ for her—and ditch the strudel altogether. I may feel a pinch at giving up a family tradition, but what really makes the meal a tradition is that we gather our family and close friends to share it. That part doesn’t change.

As parents we must smooth the way for a happy holiday. People may mean well, but don’t have as much practice at keeping our children safe—or people may not want to change their habits. Whichever the case, your child will have a happy and safe holiday because you –and possibly only you—make the effort to prepare and bring a special meal or host a worry-free fete. That you must think ahead, prepare, and possibly reorganize tradition—that is a given in the food allergic household.

But, above all, we must remember that --while the menu may need to change-- the message of these holiday meals does not. What we are eating should not be as important as who we are eating it with— as well as the laughter and gusto we bring to the table—no matter if it’s ravioli or rice cakes and jam.

The love, the sharing, the connection are what truly matters and there is no substitute for that.

May contain and other Food labeling statements-- do we buy or not

Food Allergy medical conference produced lots of good information --the excerpt below is from AAAI 's research abstracts on their website AAAI.org (link below)

it's about a topic near to my heart-- 'May Contain " and other labels-- here's their preliminary study results--my comments in bold italic

"Precautionary statements varied considerably in their effectiveness in deterring consumer purchasing with the statement “not suitable for” resulting in more than 80% of consumers not purchasing the food."

I've never seen this label actually-- maybe it's Canadian, and I am not. Canada has a more finely tuned ear to the voice of food allergic people-- and "Not suitable" is more direct than "May Contain"

"However, the precautionary statement “packaged in a facility that also packages products containing [allergen]” deterred purchasing in only 40% of directly affected from the general population, in 76% from the database of children with peanut allergy and advocacy groups, and in 73% of the indirectly affected. "

The statement below -- again from the research at the AAAI conference speaks directly to EDUCATION-- Those of us who are educated in Food Allergies, and who have some knowledge of the danger, are MORE VIGILANT.

"The directly affected from peanut allergy registry or the allergy advocacy associations and the indirectly affected were similarly vigilant; both were more vigilant than the directly affected randomly sampled from the general population."

So we should continue to educate educate educate-- that makes us-- and our all our children-- more safe.

http://www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/efficacy-of-precautionary-allergen-labeling-on-foo.aspx

College visiting

College has been wonderful for my son. But with food allergies not so hot.

The problem is proteins. With multiple allergies finding proteins without sauces and breaking may pose a challenge. What options are there? A few

Supplement

Go to a grocery to purchase cold cuts or beans(While Foods market has juice box containers that arête package kidney beans. And there's always can openers. )

Send foodstuff to your child. I am notorious for shipping 36 individual containers of Cheerios via Amazon). It's amazing what is now packages for individual use or in resealable packets. Olives! Black olives!

Get a micro fridge

That way your child can have some options. Oatmeal. Rice packets. Popcorn. A place to store food. Baked potato

investigate

Some times foods/proteins are there and one just has to find them. Kosher stations are often a good source for food allergic kids. Possibly vegan--but tofu and chickpeas are high on I greediest lists for that cuisine.

My point is dining hall experiences are not as srraightforward as restaurants can be. And yes it's a lot to add along with new friends and classes and living on ones own -- but that's life for our kids and we can help by being the support the springboard for them.

rejected again

Rejected again!!!
My cookbook was again rejected from a publisher--with what I can say is the funniest reason I've ever heard-- and one that belies the publisher's understanding of food allergies:

The press is moving toward less meat in recipes and my cookbook had too many meat oriented recipes.....

Well-- if one can't eat eggs, dairy or nuts, then how does one get proteins but from meats?
Man (woman and child) does not live on kidney beans alone!

On to self-publish in some form. Maybe a partnership with a food allergy organization-- tune in for more....
and Merry Season to all!

recipes

been thinking about new recipes-- in the never ending pursuit of what to cook for dinner. And I have a few new ideas-- not exactly recipes yet, but ideas: potato soup-- no cream of potato soup-- just potato soup. With a chicken base and lots of potatoes and green onions and a slice or two of carrots and pepper.

Or Borscht-- now that it's beet season again on my coast. By the way, there's been a frost--heck there's been a blizzard-- so the kale should be tasty now.

A note about college: in our experience, need some supplemental foods-- granted my kid is allergic to all Big Eight foods, but not enough starches and not a strong variety of proteins. But I'm hands off, and he's hands on, so it's working-- with some trips to Treasure Island (the grand supermarket there) and some treats from home (like all moms send).

more later-- and a real recipe for those soups when I get the mix right.

college part II/ cross contamination

I've been thinking lately about how much is too much: cross contamination-- how can we measure the degree to which some individuals will react? Will one child get hives, another go into anaphylaxis if there the hamburgers and cheeseburgers touch each other in the serving tray? And how does one negotiate life like that? Not knowing, and responsibly not touching. It's hard, and it would improve the quality of life for many if the cross contamination issue would be re-examined. When kids are little, then the strictness needs to be enforced to make checking a habit-- but as these kids get older, is there a way to safely and responsibly NOT worry as much about cross contam? Can the hamburger touch the cheeseburger for some young adults and not cause a problem? Can the fryer work both French fries and onion rings, and not cause a wheat reaction?

don't know but would like some opinions, especially as our kids go out into the world themselves.

off to college

Off to college-- drop off was good, pouring rain but happy and excited. The first day of orientation brought the "crowbar" ceremony-- you guessed it where the kids and parents separate! and for our family, brought the food services powwow. My kid and the head of food services sat down to make a plan. The food services head also has a daughter with food allergies--so she gets it, which warms my heart.

The plan-- first couple of days not all food stations are up and running, so limited options of burger, salads, grilled chicken and brown rice. not too bad. When all up and running-- there's steamed vegetables, soups, rotisserie chicken a kosher station with options and a gluten free area which may offer some things my kid can eat.

I did not participate-- my son did it all himself. and later in the week, learned that some packaged foods at the mini=mart ten steps from the dorm will work out fine for those snack times and days away from campus.

I think the food is working... but really a bit empty at home!

More on the reality of not cooking ALL THE TIME-- later, when it sinks in.