Food Allergy Awareness Week 2013

I think it breaks the fourth wall of blogging to comment in a post about the lack of posts on a blog but it has been almost a month since my last post so I thought I’d acknowledge that and give some updates on life with food allergies of late.  Oh, and work has been busy of course.  I’ve been back to active lawyering for a year now and to echo a concept in the book I am reading and enjoying right now, “Lean In” by Sheryl Sandberg (amazon affiliate link), work/life balance is a self defeating concept:

Framing the issue as “work-life balance”— as if the two were diametrically opposed— practically ensures work will lose out. Who would ever choose work over life?

Sandberg, Sheryl (2013-03-11). Lean In: Women, Work, and the Will to Lead (Kindle Locations 354-356). Knopf Doubleday Publishing Group. Kindle Edition.

So life is life and work is a part of it but cliche as it may sound, my family is my priority and that includes everything from managing this food allergy journey of ours to getting to forget about litigation for moments here and there to watch my children enjoy a splash pad on a sunny day.

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May 12th marked the start of Food Allergy Awareness Week 2013.  With everything having a “day” or a “week” or a “month” I can see how sometimes a day can’t just be a day, however, the positive energy that comes from making a concerted effort to raise awareness is encouraging.  I have increasingly taken up the cause of advocacy in food allergy.  Just a few things that make recurring appearances on my daily written to do list are the 2013 Las Vegas FARE Walk, the Food Allergy Bloggers Conference, the Food Allergy Parent Education Group, and Nevada Senate Bill 453.  In the meantime, we have also been doing new food allergy testing and food challenges for E and R (so far egg, milk, corn, and soy are officially off of the “avoid” list and we have an upcoming challenge for wheat – so we’d be left with peanut, tree nut, sesame, and oat as food allergies plus E’s severe cat and dog allergies).  I have to say I once felt jealous of parents who’d speak of their children outgrowing food allergies just as I’d also get frustrated with the refrain of many people when I’d tell them about food allergies: “kids outgrow those, don’t they?”  And yet.  Here we are now, with new doors suddenly open to us and the prospect of being able to instruct my daughter’s future teachers on a few less seemingly innocuous food items that could do her harm.

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I am on the walk committee for the 2013 FARE (Food Allergy Research and Education) Walk here in Nevada and we have monthly conference calls to catch up on progress getting sponsors, team sign ups, and just general advocacy.  During last month’s call, one of our walk directors, Dana Gordin, told me she had some “Be a P.A.L. [Protect a Life]” bookmarks (about 100) that she could give to me to share at the school we’re sending E to this fall.  I contacted the school and they were delighted at the prospect so Dana very generously shipped the bookmarks to me (I think she understands how hard it is for a busy mom of two kids under 5 to just zip over and pick something up – it was very much appreciated!) and E and I went to her school to give the bookmarks to the school nurse.  There was a time when I planned to homeschool E, even though I personally did not enjoy homeschool as a 7th and 8th grader, and now we are making plans for her kindergarten experience.  With other children!  She only attends preschool once a week right now for 2 1/2 hours so switching to half day, daily kindergarten will be an adjustment for us all.  I hope to be an active classroom mom as much as my schedule can allow, though, and have been trying to get her used to the idea of this new place and new friends.  She loved taking the bookmarks to the school and when the nurse asked her about her allergies she spoke for herself.  A surprising development in that I am used to being her voice.  When we left I asked what she liked most about the new school and she said she liked that there was a nurse.  My inner voice worried that this meant my daughter was fearful about her allergies and being safe but then that was countered with the sense that my daughter felt encouraged by the safeguards in place for her, and other children, to have a positive experience at school.

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A few weeks earlier, I brought the children with me to view, here in Las Vegas, the televised hearing regarding Senate Bill 453, which would allow for stock epinephrine in Nevada schools.  You may recall that my involvement (though minor) with the progression of this legislation reaches back into late last year.  Caroline of Grateful Foodie has been working non-stop at each stage of the legislative process to keep momentum and support for the bill strong so it is through her e-mails that so many of us knew to come to the Grant Sawyer Building to rally in support of the bill when it was before the Senate committee and later the Assembly committee.  The bill has passed both committees as well as a vote of the full state senate so next up is the Assembly floor vote and hopefully Governor Sandoval’s desk!

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Everyone I tell about the bill says it sounds like something they would support, but you can’t take common sense for granted when it comes to the legislative process.  Bills die without voices to hold them aloft and this bill would be no different.  I wanted the children to know that this is how you make a difference, by being present even if it is just to cheer on the policy makers and wear light blue to let them know who you’re with.  Even watching the livestream of the Senate vote from home, from afar in Vegas while in Carson City history is being made, is exciting.  I explain to the children that we have to make sure children who can’t afford epinephrine or don’t know yet that they have allergies can get help fast if they need it and it really is as simple as that.  Now, as a friend recently pointed out to me, it can’t stop at schools because there are many more people, such as adults in workplaces, that need injectable epinephrine that is readily available and the wherewithal to administer it, but this is a start.  Laws often work in narrow areas before they grow and change to wider implementation.

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SB 453 is about as serious as things get on the advocacy side, but the fundraising of things like the FARE walk or the food free easter egg hunt hosted by FAPE or the Food Allergy Bloggers Conference all have a place in the order of things as well.  I was approached by Jenny at Multiple Food Allergy Help earlier this year because she wanted to put on a conference to bring the online food allergy community together.  You can read more here or even find out about registering and buying tickets to hear fantastic speakers, meet with company representatives for allergy aware products, walk with the blog conference team on November 2nd, and so much more.  It has grown and blossomed to be an event people are looking forward to and justified the feeling I had early on that I could make a positive contribution.  We have the support already of a local FARE walk grant, sponsors, ticket buyers, speakers, our host hotel the South Point…it is coming together.  Devin at Nom Yum & Free even gave us a very kind shout out so word is getting out and I will get to meet many in my support network in person when November rolls around!  I’m also hopeful that the local food allergy community will love what we have in the works.

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Speaking of the food allergy community…. Jennifer at Food Allergy Buzz hosted the fourth annual Food Allergy Awareness Week twitter party tonight (well, if I get this post done in the next few minutes that is – more fourth wall breakage going on!) and one theme that resonated among participants was the level of support we get and give on the internet.  I have been able to find research, news, support, recipes, and more through the blogs of others dealing with food allergies when the allergists we tried out one after the other just weren’t offering the guidance we needed.  And so during this twitter party, which is kind of like a chat session open to anyone that searches for a particular topic marker called a hashtag for those unfamiliar with twitter, a few exciting things happened.  First, there was a great energy among participants and second, we “trended” on twitter!  That means that enough people were talking about #foodallergy that the hashtag was displayed to other twitter users (see the screenshot above).

Now as I sit here pondering all of the goings-on of the past few months, I wonder if I focus on the advocacy and awareness aspects of food allergy because I don’t want to think about the real threats to E’s safety.  Of losing her.  I’m not sure.  I actually had my first reaction related nightmare the night before Mother’s Day, that she was hurt and I couldn’t save her, and it unsettled me.  Am I devoting time to other pursuits that ought to be dedicated to my children?  This week has been one of a string of reflective ones for me as I contemplate whether working on things like a blog or going to hearings or looking at the computer screen for anything other than a “have to” instead of “want to” is the best thing for the people that depend on me directly.  I’m not sure I have an answer.  I read a fantastic post by Rosie Molinary (an author and blogger that the lovely Tami Hackbarth introduced me to), that outlines “honor[ing] your rhythm […] values […] and time” to achieve some sense of balance.  I was able to ask her some follow-up questions after reading the post and she suggested making a set time on the calendar open for saying “yes” and once that slot was full I should be comfortable saying “no” or deferring someone to the next available slot of time.  Does this strike anyone else as brilliant?  It struck me that way and I am trying to implement it.  I don’t want to come across as being ungrateful for the opportunities I have to help or be of service but as my children move into new phases and need different aspects of me, I need to be attentive to that.

None of this is flowing particularly well but it is authentic and it is me and I hope some of these updates are of interest.  I do know that I feel invigorated by time I spend nurturing my mind with reading and connecting with others so I see those things as helping me in my capacity as a mother and a wife.  There is so much to be thankful for and so much to keep striving for.  Thank you for still reading.

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Elsewhere…my latest Vegbooks.org Posts:

Hilda and the Bird Parade 

The Penny Books

Hanukkah, Oh Hanukkah

Treasury for All Seasons

Baby Shower Gifts for Veg Moms

9 thoughts on “Food Allergy Awareness Week 2013

  1. We also need to lobby to make the epinephrine accessible. Last year, a student at my school with known allergies went into anaphylaxis during breakfast in the cafeteria before school, and because her epi-pen was locked in the nurse’s office, we couldn’t get to it and had to call 9-1-1. I hope the current bills include not just having the medicine on campus, but ensuring that school staff can access and administer it…

    And I hate “work-life balance” 🙂 I think it should just be “life balance” and trying to make sure that one area of your life doesn’t completely overshadow all of the other important areas of your life.

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    1. I very much agree that they should not be locked away, kids should also be allowed to self carry. That must have been so scary for everyone involved at your school.

      Life balance is more like it! Or maybe “priority management” but that sounds like some kind of strange business-speak. Life balance it is. 🙂

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  2. Great update, fourth walls be darned! You’re doing such important work. I know I’m much more aware about food allergies than I was a couple years ago thanks to your blog. And of course I love the ping backs to your Vegbooks reviews (which are so thoughtful and well written).

    Did you ever ask E why her favorite thing about the school is that there’s a nurse? I can’t think of a good example off hand, but I know I’ve worried about kiddo’s responses to my questions before (particularly about sensitive topics, e.g. being a vegan kid in a non-vegan world) and then found out that I completely misunderstood her! Perhaps E likes the tongue depressors in the nurse’s office, or thinks the nurse is really fun, or hopes she’ll get stickers when she goes to the nurse’s (like some doctor’s offices)? Or maybe your mama instinct is right and she just likes knowing she’s safe.

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    1. I haven’t asked her about the school nurse – we went to her new school on our way to her current school that day so the conversation was cut short. She’s always really loved her pediatrician and my mom is a nurse so it could be all related. I’ll try to talk to her about her new school again soon, you’re right that I might be anticipating a deeper reason and it could be a lot more straightforward!

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  3. p.s. – Have you gotten to the part of Lean In yet where she talks about simply letting some of the small stuff go? Difficult concept for us working moms, especially when it comes to stuff related to our kids (the example I recall is a green shirt on St. Paddy’s Day) but so so important!

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  4. E and I had a conversation during my Spring Break visit about the school nurse after we visited her school, a sort of “Why do schools need nurses?” thing. I told her that my school has a nurse, too, and that they help kids at school who get hurt or don’t feel well.

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    1. She really was fascinated by the nurse’s office when we were there the time before last – there was a boy getting a bandaid so that was a source of fascination as well! I hadn’t really considered that her current school doesn’t have a nurse at all on site. Kind of goes to your point about stock epinephrine being accessible – if people just expect responsibility to fall with some nebulous nurse figure and a school doesn’t have one, then what?

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