Regrets of a Food Allergy Mom

Six years ago we had our initial full allergy diagnosis.
On January 5, 2010, I wrote on my personal Facebook: “Anyone done any wheat, soy, milk, egg, AND nut free cooking/baking?  Turns out [E] is allergic to all of the above and more. […]”
On January 5, 2016, new guidelines were announced regarding infants and food allergy.  You can read Dr. Dave Stukus’ breakdown here, he is one of my go to sources for evidence based information about food allergy.  I have met him and his wife in person and they’re just lovely, caring people aside from being super smart.
It is so weird to be reading about the new early introduction guidelines and have the memory of our initial diagnosis popping up in my Facebook “on this day” feature.
As usual, my fellow allergy moms on Twitter came to my rescue as all of this was swirling about.
Laurna (@myallergyboy) was expressing her own struggle as she read the early peanut introduction guidelines and thought of her child.  Sarah (@sarahjchapman) helped us both to consider that this could help quite a few people but understands better than many what was going through our minds as she’s been on the food allergy parent road as a trailblazer with young adult children.
While Dr. Li‘s research makes me the most hopeful for the future of a food allergy cure, any research into the whys and how-to-prevents in the field will be the rising tide to lift all boats.  I can know these things and intellectually accept them but regret is a strange specter.
At court this week as I began my appearance on the record, the Judge interjected – “is everything alright counsel?”  I was puzzled and she continued, “you don’t seem like your usual chipper self.”  I would never characterize myself as chipper but I do work hard to have a professional demeanor.  My “work self,” much like my “online self” is curated to be positive because as cute as Eeyore is, most people wouldn’t want to read his twitter feed.  Which isn’t to say it is a misrepresentation, but I do keep a journal of sorts where I get my thoughts out of my system and file them away to ponder another day.  At any rate, I had been deep in thought when my case was called this week and it showed in my face.
Six years of managing food allergies and I have many regrets.  I can’t shake them and I often journal about them.
On June 29, 2015, I wrote in my journal: “I’ve been thinking and reading a lot about regret lately and struggling to understand why when we’re young we don’t appreciate things.  People told me to savor the good moments but I didn’t really understand that what they were saying wasn’t to just enjoy them – I was supposed to be more present (and I wasn’t).  Like when you have a newborn and you’re obsessing over how long they sleep in a row, or just worrying in general.  Worrying is my specialty – I even do it professionally.  Then I think, “well, can’t do anything about what is past, need to change my life in the here and now,” but it is every bit as scary as it has always been.  Keeping as busy as possible helps me not ponder life, the universe, and everything even though it is a part of the problem, it is part of what got me into this mess.  There’s so much to be grateful for, and I am very grateful, which is what I ultimately circle back to… but gratitude is not the same as being present, right?
I certainly do regret being so caught up in food allergies when E was a baby, and then when R was born, that I didn’t pause to appreciate their small fingers and toes, their sleepy sighs, or just being at home with them.
I regret not getting a diagnosis sooner, like when E first reacted to her very first taste of oatmeal.  I regret talking myself out of something big and scary like allergies and trying to treat her eczema from the outside in.
As I sit here six years after learning of all the things she couldn’t have, the things that could hurt her, my advice to my past self wouldn’t be about all the medical things I’ve learned about allergies or all the legal things I’ve learned about label reading and disability rights legalities.
I regret not moderating my reactions as I learned to help our daughter be safe.  She is my little sunshine, chipper and cheerful but my actions have made for a rain cloud that follows her wherever she goes.  In my efforts to prepare her to be safe, I made her fearful.  I chide her for not remembering to take her “epi” with her when she heads out the door.  I chide her for not taking it off and putting it away when she comes home.  I nag and nag and nag about label reading and not taking risks.  And I act surprised when she notices that I don’t take a sip from her water bottle, realizing instantly that I’ve eaten something during the day that makes me hesitate and feeling left out for me doing so.
I had falafel at lunch yesterday.  Yes, I make her homemade versions without sesame but I have lunch meetings at restaurants she can’t go to.  I sneak away for Thai food or Middle Eastern food and tell myself these meetings have networking purposes or are a chance to talk with my husband kid free but when she reacts with sadness I know it is my doing in the first place.
So, new to diagnosis allergy caregiver – if you stumble along and see where I’m at?  Try to have an outlet for your worst fears that holds you back from sharing your worries with your child when you tense at the sight of peanut smeared hands on the monkey bars or the note home about the upcoming Willy Wonka themed class party.
We’ve been listening to the Harry Potter books in the car and just finished book 4.  “Constant vigilance!” Mad Eye Moody says.  I felt that was always my mantra for food allergies but I was wrong.  We don’t tell our kids of the dangers of car accidents each time we buckle them in, but this allergy mom in trying to make “safe” treats and calling them as much unconsciously or otherwise created a concern about the “unsafe” ones.  The danger lurking in every bite.
It wasn’t fair to her, it isn’t fair to either of us.  She’s the one with the developing mind an impressionable heart.  I have learned and adapted and, dare I say it, calmed, over six years and it is my job in the next six years and beyond to make sure I share the reassurance and calm with her even more than I have shared my anxiety for her future.

Book Review: “Lean In” by Sheryl Sandberg

If you are looking for a conversation starter, “Lean In: Women, Work, and the Will to Lead” (amazon affiliate link) is a great choice.  I am glad I read it on the recommendation of several women I admire, but now that I’ve read it I can see where a lot of the critics are coming from.  When we initially selected “Lean In” by Sheryl Sandberg for our book club book, I read some online reviews and found there were those that praised Ms. Sandberg’s approach to the issue of equality for women in the workplace while others felt like her writing came from a position of a privileged career.  I dismissed the negative reviews, thinking that being a COO of Facebook shouldn’t foreclose someone from writing about workplaces in general any more than being a man would stop someone from writing about women’s issues.  You’re allowed to explore a topic even if it isn’t something you live, after all.  That said, I found the author at her most credible when she was in her element, recounting stories from her own career and relating them to the careers of similarly situated people.  The book was strong, well-documented and footnoted, an inspired me on many fronts.

It is near the end where the narrative lost me a little, but overall the book is strong.  I think Ms. Sandberg tried to address a wider audience with her concluding chapters.  The biggest light bulb moment in the book for me was where she lays out how women step onto an off ramp  career-wise when they anticipate having a family and therefore miss out on opportunities for a career that would suit a family life down the line.  If she was unapologetic about her audience being women working in the higher reaches of corporate America then I would have had no (or fewer) issues but she brings the “mommy wars” in as an afterthought and then does nothing about them.  She gives remarks about respecting women’s choices while saying they don’t really have a choice but I don’t think we can discuss equality in the workplace without addressing that corporate America in general (though her experiences with Google and Facebook are different) exploits employees.

Maslow’s hierarchy of needs is a favorite concept of mine since I learned about it the first time and it came to mind when I was trying to put my finger on what bothered me about this book.  I am oversimplifying this, but according to Abraham Maslow, when your basic needs are not being met, you won’t seek to resolve needs that appear higher on the pyramid of needs.  So if you don’t have food, it is unlikely that you’re worried too much about whether your esteem or self-actualization needs are being met.  Applied here, the things that “Lean In” asks us to do regarding our careers and even home lives skip ahead in the hierarchy.  There’s no way that the percentage of women in the workforce that have children for whom they give care really would have time to worry about whether they are making themselves available for career advancement.

sandbergquote_ohmahdeehnessI admit that I am among the privileged parents, I am able to work largely from home (unless I have meetings or hearings) and my husband can take time off if our kids are sick.  Maybe I feel challenged by the implication that “staying home” to care for children is like stepping away from a career, and that such a choice may hurt womankind in the workplace?  Am I seeing something in the book that comes from myself and not from what the author actually is saying?  My friend Jessica recently shared with me John Updike’s rules for literary criticism (see them listed on Wikipedia) and I have been struggling with my review of this book for a while now so the last rule listed jumped out at me:

If the book is judged deficient, cite a successful example along the same lines, from the author’s œuvre or elsewhere. Try to understand the failure. Sure it’s his and not yours?

(source).  Now, I think “Lean In” is very good but in trying to mentally unpack why the final chapters unsettled me I am left wondering what I feel guilty about, what riled me in the book that represents a button within me that was pushed.  I feel the tension of the false choice of the “work life balance.”  I feel the pressure of phrasing like “working mom” and “stay at home mom” – for example Ms. Sandberg writes, “Women who want to take two weeks off … or two days … or two years … or twenty years deserve everyone’s full support.” (location 2393)  When I read that I highlighted the text because even the idea that I took time “off” feels like a judgment.  Maybe it isn’t?  Maybe I’m the one that is insecure?

So much of reading this book entwined with things that were going on in my own life as I read it, so I thought the blog might be a good place to “think aloud” and organize my thoughts.  I was at a free library concert with the kids a few weekends ago and before the show started one of the children’s librarians announced that all summer, while school was out, they would be offering free lunch at the library (every day of the week except Sunday).  Food insecurity is a terrible thing to contemplate.  That there are children who have their only meals in a given day because they attend public school feels very wrong.  You may know of someone that opts to spend money one way and then rely on free services to close the gap instead of focusing on feeding their children (or making conscious choices about having children in the first place), but whatever their parents’ choices, kids don’t have any choices.  I know that the book isn’t addressing the moms that have no choices even though it attempts to acknowledge that until we have choices for both women and men then there won’t be equality.  The book also acknowledges that there are women, 50% of working mothers for example, that don’t even have vacation time and face poverty if they take time for leave.  To acknowledge these women in the fact sections of Ms. Sandberg’s arguments and then swing back instead to examples from the US Treasury, Google, Facebook, Yahoo, and the like, is what made me feel like the book’s premise was on shakier ground.

Going back to Updike, however, one of the listed rules for criticism is:

Try to understand what the author wished to do, and do not blame him for not achieving what he did not attempt.

(source).  Is one book going to “solve” it all?  The title and tone of the book addresses the reader directly, male or female, and implores them to “Lean In” to whatever pursuit is their passion.  I might be struggling with the fact that I can be passionate about doing a good job, or advocating an issue, or doing right by my family but that doesn’t mean that any one or all of those things define me as a being.  Sure, a career can have fulfilling moments but do I love what I do?  Can I “Lean In” when the work I do as an attorney is perpetually adversarial (sometimes needlessly so – I’m looking at you, “scorched earth” brother and sister attorneys)?  I derive enjoyment from a job well done, but the advice I’d give a young woman early in her career would be that in the long run I don’t think title or status matters as much as just living life and seizing the moments you have now.  I work a lot in elder guardianship cases and am constantly reminded that you can work hard your whole life and your health can deteriorate suddenly and often tragically, so I’m just not sure.

My struggle with this review shows me that there was no “right” way to conclude this book, except to probably hope that some portion of it inspired the reader.  Inspired them to lift others up, to support one another, and to stop infighting when the specific goals we have are different but overall we wish only happiness and free choice for others in our national (and global) community.

Updike suggests to “Give enough direct quotation — at least one extended passage — of the book’s prose so the review’s reader can form his own impression, can get his own taste.” (source)  I thought I’d end with my favorite highlights from the book (I love that this is a feature of e-books on Amazon’s kindle, by the way!) as I read.  Seeing them on one page brings me back from my review journey to the realization that this is certainly one (but not the only) book people with an interest in work and families should read so that they can hone their own perspectives.  I will bring one passage ahead of the rest because I would love to see the rallying cry realized in my lifetime, or at least that of my children:

Until women have supportive employers and colleagues as well as partners who share family responsibilities, they don’t have real choice. And until men are fully respected for contributing inside the home, they don’t have real choice either. Equal opportunity is not equal unless everyone receives the encouragement that makes seizing those opportunities possible.

(location 2371)

And now on to the other standout passages (for me):

As Ellen Bravo, director of the Family Values @ Work consortium, observed, most “women are not thinking about ‘having it all,’ they’re worried about losing it all—their jobs, their children’s health, their families’ financial stability—because of the regular conflicts that arise between being a good employee and a responsible parent.”
(location 348)
Despite being high achievers, even experts in their fields, women can’t seem to shake the sense that it is only a matter of time until they are found out for who they really are—impostors with limited skills or abilities.
(location 416)
In order to protect ourselves from being disliked, we question our abilities and downplay our achievements, especially in the presence of others. We put ourselves down before others can.
(location 614)
[…] Alice Walker […] observed, “The most common way people give up their power is by thinking they don’t have any.” Do not wait for power to be offered. Like that tiara, it might never materialize. And anyway, who wears a tiara on a jungle gym?

(location 945)

Communication works best when we combine appropriateness with authenticity, finding that sweet spot where opinions are not brutally honest but delicately honest.

(location 1150)

I learned from Fred that effective communication starts with the understanding that there is my point of view (my truth) and someone else’s point of view (his truth). Rarely is there one absolute truth, so people who believe that they speak the truth are very silencing of others.

(location 1160)

So the irony—and, to me, the tragedy—is that women wind up leaving the workforce precisely because of things they did to stay in the workforce. With the best of intentions, they end up in a job that is less fulfilling and less engaging. When they finally have a child, the choice—for those who have one—is between becoming a stay-at-home mother or returning to a less-than-appealing professional situation.

(location 1382)

For most mothers, kids are not a hobby. Showering is a hobby.

(location 1577)

[…] mothers also have to endure the rude questions and accusatory looks that remind us that we’re shortchanging both our jobs and our children. As if we needed reminding. Like me, most of the women I know do a great job worrying that we don’t measure up.

(location 1821)

Instead of perfection, we should aim for sustainable and fulfilling. The right question is not “Can I do it all?” but “Can I do what’s most important for me and my family?” The aim is to have children who are happy and thriving.
(location 2072)
Every social movement struggles with dissension within its ranks, in part because advocates are passionate and unlikely to agree on every position and solution.
(location 2414)
Society has long undervalued the contributions of those who work without a salary.

(location 2499)

When Gloria Steinem marched in the streets to fight for the opportunities that so many of us now take for granted, she quoted Susan B. Anthony, who marched in the streets before her and concluded, “Our job is not to make young women grateful. It is to make them ungrateful so they keep going.”27 The sentiment remains true today. We need to be grateful for what we have but dissatisfied with the status quo. This dissatisfaction spurs the charge for change. We must keep going.

(location 2566)

Sheryl Sandberg is donating all of her income from this book to establish Lean In, a nonprofit organization that encourages women to lean in to their ambitions.

(location 3814)


Thanks for reading!  I’d love to hear your thoughts about the book in the comments!

May 2013 Living With Food Allergies Blog Carnival

Image Source

The last time I hosted the Living With Food Allergies Blog Carnival was in July of 2012 so here we are almost a year later and I get to do it again!  Thank you to Jennifer B of Food Allergy Buzz for allowing me to take part again.  Last month Lindsey from Frugal Food Allergies featured some great posts.  My lead image for this post is a nod to the contemplative theme of many of this month’s submissions and to the different perspectives we share with one another through blogging.

I’ve created a Pinterest Board for the carnival (if a post had an image, Pinterest won’t let you bookmark something if it doesn’t have at least one picture that Pinterest recognizes so that also explains the random images for a few posts) as well to make it easy to re-pin your favorite posts for future reference!

The categories I’ve used below are just a fun way to group submissions but I hope you check them all out, regardless of where I’ve grouped them.  Thank you to all that participated in the May 2013 Living With Food Allergies Blog Carnival.  To submit your blog post to the next edition, use the following carnival submission form.

In the Know…

Chef Froggie (who recently graduated with her bachelor’s degree, congratulations!) has been concerned for some time that her memory has been faltering as a result of anaphylactic reactions and was sure to share her findings with the internet at large in her post Consequences of anaphylaxis: memory and processing issues at her blog, Gluten Free Froggie in the Kitchen.  This is something I’ve found especially in the food allergy community – the concept of sharing a difficult experience or diagnosis so that the next person up late at night googling their symptoms can find the right questions to ask their own doctor.

Courtney J covers a lot of ground in her post Food Allergy Q&A 1 at The Random Ramblings of a Stay at Home Mom.  Her daughter has 24 food allergies and as her mother, Courtney gets asked a lot of questions.  Her experience being the advocate for her daughter hits very close to home.  I, too, had doctors write us prescriptions for skin creams instead of addressing other possibilities for terrible eczema.

Jennifer Kales wrote Food Allergies and Allergic Teens: Taking the Next Big Step as she contemplated another birthday for her daughter at The Nut-Free Mom.  Jennifer writes about helping teens “navigate their new independence with regard to food allergy management.”  Seeing a photo of her daughter’s 6th birthday cake even as she turned 13 in February of this year brings home how fast things change and the importance of being ready to have the discussions with our kids that they need depending on their age and maturity.

Jenny Sprague at Multiple Food Allergy Help has two posts for this month’s carnival, Examining Educational Options [part 1] and The Food Allergy Bloggers Conference.  Her little boy, Jacob, has had cancer, deals with multiple food allergies, uses a feeding tube, and also has Eosinophilic Esophagitis (or EoE) but even with so many challenges he wants to go to school.  In her second submission, Jenny shares how the Food Allergy Bloggers Conference came to be and why you should all plan on coming!

Karen Blue selected Varicose Vein Products That Contain Nut Oils for this month’s carnival – it is posted at Chemurgy and Allergens which is an amazing resource regarding allergens in more obscure places.  As Karen writes, this is “another reason to always be aware of what is in products.”

Tim Burns, a fellow geek, attorney, and dad of a boy and girl, writes in his post BEST PEANUT ALLERGY FRIENDLY TEAMS IN MAJOR LEAGUE BASEBALL at A Geek Daddy.  I think the more we talk about peanut free baseball options and get the food allergy community out in support of them, the more they’ll be offered.  Or at least that is what I hope.  Tim writes with his submission: “Our family loves enjoys cheering on our favorite baseball team the Detroit Tigers, but unfortunately we can rarely go see them play at their stadium due to the risks and dangers presented by my daughter’s peanut allergy. While not perfect, some Major League Baseball clubs have made an effort to work with the peanut allergy community to make their games more accessible to fans. I’ve provided my opinion of the best clubs providing peanut allergy friendly options and links to find out more information about going to a game if you or a family member are impacted by peanut allergies.”

Keeping Epinephrine at Hand…

Missy Berggren wrote no more excuses: get *FREE* Epi Pens through the end of the year at her website Marketing Mama – it made me wish the program had been in effect when I had our prescription for the year filled but hopefully those of you with upcoming expiration dates on their injectors can take advantage of it.  Especially families that need multiple injectors!

Caroline Moassessi, one of Nevada’s stock epinephrine champions, submitted Allergy Anaphylaxis Playbook by Jerome Bettis! posted at  She, and other bloggers, got a chance to interview Mr. Bettis and look over some of the materials associated with his “playbook” being offered through Sanofi (makers of Allerject in Canada and Auvi-Q in the United States).  Caroline has very high praise for the guide.

Joanne (Food Allergy Assistant) submitted her post EpiPen With Zero Copay at Food Allergy Assistant, being sure to add with her submission, “May I also mention that the Auvi-Q website has a $25 co-pay? I just want everyone who needs an auto injector to have access to one!”  I think the competing companies in the marketplace right now have to realize how excited the food allergy community is that any promotions may put injectors into the hands of people that need it the most.

Of Labels and Labeling…

Colette Martin covers yummy treats on her blog but also delves into other aspects of food allergies, such as with her recent post Learning to Eat Allergy-Free: What the Proposed Gluten Free Labeling Laws Might Mean for Families with Food Allergies at Learning to Eat Allergy Free – Multiple Food Allergies.  Some progress in labeling laws relating to gluten free products may not be a boon to wheat allergic individuals and Colette has the scoop.

Kate (who goes by the name “Ana Phylaxis” on her blog) submitted Ana’s Thoughts: Food Labels. Seriously? from her blog The Diary of Anaphylaxis – she points out a label she found that indicates, without specificity, that there may be allergens not listed in the ingredients present in the food item.  What do you think?  Should manufacturers be able to exclude allergic individuals with blanket warnings?  Do we want to purchase their products if that is their mindset?  A lot to think about!

Something to Eat…

Ashley Nicolei of LiveLoveManja offers a restaurant review in her tumblr post entitled Manja Review: Kitchen Door Napa, Local Seasonal & Handmade.  Uniquely, Ashley’s review is written in the third person and expresses her gratitude for the accommodation of her nut allergies.

Stacy Molter offers two milk free and nut free recipes for the blog carnival – Chocolate Chip Sunbutter Pudding Cookies Recipe and Apple Pie Spice Bread Recipe posted at  Stacy’s 2 year old recently outgrew his sunflower food allergy and that inspired her cookie creation while her spice bread recipe is a novel spin on apple pie flavor.

Something to Think About…

Daniella Knell at Smart Allergy Friendly Education addresses something that I’m sure comes to mind often when dealing with food allergies in her post Stressed About Navigating Food Allergies?  She advises people: “KNOW YOUR NEEDS… then FIGURE OUT YOUR RESOURCES.”  The post breaks down a way to approach your food allergy related stress with smaller tasks to tackle.

Jennifer B.’s post Can Caregiver Mishandling of Food Allergies Equal Medical Neglect? at Food Allergy Buzz raises the issue of caregivers giving allergens to children intentionally.  Is an allergy diagnosis effectively a prescription for avoidance?  And if a caregiver doesn’t comply, are they being careless or is it medical neglect?  Jennifer poses some difficult questions mainly because it is hard to imagine willfully putting a child without a choice of what to eat in harm’s way.

Lacy Wade submitted Making it Milk-free: Different is Perfect. {A post about removing the voice of negativity.} from her blog Making it Milk-free.  In her post, Lacy talks in part about some of the common comments parents of children with food allergies hear, such as suggestions that they just homeschool their children.  She wraps things up with great suggestions for being more supportive of those in your life that may be struggling.

Sara Gooley’s post Agree to Disagree on Maddy’s Seven Year Itch is where I discovered the quote that appears at the top of this post from Joseph Joubert.  Sara closes with the quote but her whole post is well worth the read and it spoke to me because even in the generally supportive food allergy community our words can be harsh and critical of one another even without realizing it.  Sara writes also in the post about OIT, or Oral Immunotherapy.

Selena Bluntzer makes a clever commentary in Amazing and Atopic: Study Shows Allergic Children Born to Loving Mothers posted at Amazing and Atopic.  Satirizing the studies that seem to barrage us each week with some other potentially guilt inducing proclamation about how our children might have become part of the food allergy epidemic, she reminds us that mothers, fathers, caregivers, and anyone that cares about someone with food allergies loves them.  This would make a great series, Selena!

Finally, there’s my own submission for the carnival is my post entitled Food Allergy Awareness Week 2013 here at Oh Mah Deehness! – I cover some of the advocacy activities (Nevada’s stock epinephrine law, the FARE walk, the first ever Food Allergy Bloggers Conference, etc.) that I’ve been engaging in as well as a bit about our current food challenge journey.

From the Inside Looking Out

Recently a comment I made about how being a food allergy parent seems from the outside (I know I look like a “helicopter mom” to others) contributed to a post by Asha Dornfest on her Babble Voices blog “The Accidental Expert” – feel free to check it out: When your “balance” looks different

I think this passage in particular is applicable to both the food allergy parent and the veg parent in me:

To the naysayers, experts, and well-meaning people who still think we’re nuts: we appreciate your opinions. They help us clarify our own. We know you mean well, but you’re only seeing part of the picture.

Here’s what would help more than your judgement: your confidence in us as intelligent, conscientious parents. We don’t need your agreement. We need your support. Your continued honesty and friendship. Your willingness to keep talking.

But in the end we will always declare: we know our families best.

I was talking with a friend on Twitter (she runs the website Multiple Food Allergy Help) last month and she had written that her son was distraught over a karate teacher telling students they need to go without sugar for 7 days as that meant he couldn’t eat one of the treats that was safe for him: pop tarts.  (Sources: 1, 2, 3)  It is a perfect example of someone on the outside not getting the unique circumstances of a family.  In this particular instance it made a sweet little boy feel bad about what he could safely eat.

Ages ago (okay, two years ago) I read a post called “When Clueless People Attack” by Amy Corbett Storch that really stuck with me.  In it she describes how people judge parents for putting their “older” children in strollers.  For, say, an autistic child, it just might be the only way their parent can keep them from running into the street or out of a store.  There’s no way to know, especially from what is just a momentary interaction.  Now, if you see something that raises your concern, like child abuse or the like, then of course that is a different situation but as far as choices like what treat my child gets or whether someone else’s little one has a pacifier in their mouth it is best not to judge.

On the flip side there is my internal dialogue, the one that looks at what other moms are doing and thinks I am not nearly that fabulous.  If that is also something you struggle with, Jessica at shared this article with me and it made the great point that “Your Children Want You.”  So even though I am probably my own worst critic (who doesn’t worry when all their child wants for dinner is the same thing they had for lunch and for dinner the night before?) I am doing my best and hope you are getting the support you need to do your best as well.