author of Feeding Eden

Honey Cake

 

This pie was about to go into the oven for celebrating the Jewish New Year. Honey cake can be dull without nuts. And Eden can only tolerate about one egg per cake so I decided to bake an apple pear pie drizzled with local honey.

Allergic Limbo

Limbo (Merriam-Webster) 1. abode of souls that are according to Roman Catholic theology barred from heaven because of not having received Christian baptism 2. a place or state of restraint or confinement 3. a place or state of neglect or oblivion 4. an intermediate or transitional place or state: a state of uncertainty

There are familiar limbos for people dealing with chronic illnesses like food allergies. For some there is the limbo between symptoms and diagnosis (while for others that first frenzy of anaphylaxis reveals too swiftly.) There is the limbo between a mild allergic reaction and the effects of antihistamine. For parents there is the limbo between the hours a holiday or party begins and the moment your child has to cope with their “different food.” And there is the long-term limbo of waiting to find out if they will “outgrow it.”

I’ve grown used to Food Allergy Limbos while raising my son. Now, after writing Feeding Eden, I’m learning the limbos of becoming an author. I was a middle school English teacher before writing my memoir and I loved almost every minute. Mostly, I wrote with my students. I had no aspirations to publish beyond my classroom. But after I stopped teaching, Eden’s story was inside me. And now I’m in final copy edits of it . . . waiting. So there is the intermediate work towards publication in March. There is the work on the marketing strategies (daunting for someone whose public speaking audiences were formerly limited to tweens, not adults.) There is the work on my new website. The new site. I feel like I’m in Internet limbo while my next home base is in development. My final chapter in Feeding Eden is titled New Normal. Like so much of life, New Normal is a place of transitions -- progressive limbo.

The Garlic Bread Barbecue

When you have a child with food allergies there are two kinds of screw ups. The first is that you can let your child eat the wrong food. The second is that someone else might give your child the wrong food without your knowledge. Sometimes you might find yourself playing a masochistic game by wondering which would be worse.



A few weeks ago my family was at a beach house barbecue with two other families - we milled about from screened porch to yard while the sun set over the trees and the adults lounged in the luxury of full plates and excited and distracted children.


Then my son did something he has never ever done: He asked one of the fathers if he could please, "Have another piece of garlic bread." It was the first time he asked anyone but myself or my husband for food and he ate it without telling us.


Fact #1 - There was a platter of garlic bread that had been slathered with butter (I watched the hostess prepare it) on the dining room table. Fact #2 - During the making of said garlic bread the hostess had given me a hunk of the baguette she used (I read the label twice) so I could make "safe" bread for Eden by slicing it and adding olive oil. The rest of his "safe" bread was on a plate set aside in a corner of their kitchen. Fact #3 The father that Eden asked knows my family, knows that Eden had multiple anaphylactic food allergies and has been sympathetic. Fact #4 Eden has had the potential for anaphylaxis to all dairy foods for over seven years. Fact #5 The father that gave Eden the garlic has been so heartfelt in his apologies that I've since wished I had been the one.


Well, Eden came to me a few bites into his bread and told me that his throat felt really itchy and he thought it was from my bread. We did a body check and he had two two small hives. After calming and reassuring him, he drank a glass of ice water which made his throat feel better. Then Eden told me "I don't think I need Benadryl," but I was ready with a full bottle and our two Epipens. He promised to stay in the same room with me and tell me about any more reaction. The hives receded completely and Eden reported feeling "Okay. I really think I'm okay." Okay.


But by the time we got home Eden didn't feel as okay. He began sniffling and blowing his nose. I went down the almighty checklist of anaphylactic symptoms: No other respiratory issues, no more skin issues, no swelling and certainly no feelings of mental distress. I gave him a dose of Benadryl as a preventative measure. But the next day Eden woke up with a head full of mucous and a "pressing all over my head." Snuffling and blowing, pulling tissue after tissue, and then, if anything, more Benadryl made him feel "stuffier." I wondered if I should have medicated him at all. (I also noted Eden had had very mild symptoms relative to his last "dairy accident" six months earlier and allowed myself to be a little happy about it.)


A larger, unanswered question looms. It's one that I've asked in my upcoming food allergy memoir Feeding Eden. An excerpt from:


I’m going to guess that almost all parents think about the worst—the what if?—at least once in a while. And so I’ve even asked myself what would be worse—if Eden ate deadly food on my watch or, with good or careless intentions, on someone else’s? Would it matter? My answer growls back at me with bared teeth for daring to ask: “No, no, no, you idiot! How could it matter whether you spend the rest of your life trying to forgive a friend or Drew or a stranger or yourself?” And still the same animal purrs into my ear in the dark hours: “Wait! Shhh. Now just think it. Think it.” And then I do. My sweet boy could in a moment be gone because and only because he opened his mouth to eat. How can I think it?


~ Chapter 8: New Normal


In my book, I answer myself by suggesting that instead of dwelling on the "What If" allergy parents need to channel their concern towards always being prepared with medications and emergency plans. But since writing that passage and being at the barbecue Eden has neatly coined "garlic bread barbecue" I've learned a little more. I've learned how hard it is to be that friend or stranger, to be the outsider without the medicine bag, the knowledge, the history of both making mistakes and forgiving yourself. In other words, I've learned that for allergy parents there is no "worse" accident so long as we are prepared to carry our children safely through to the one.

“Tell Me Where It Hurts”

The dots that connected my son’s multiple life threatening allergies to his early developmental delays confused us at first. It went something like this: While still a baby, Eden had a series of minor allergic reactions and some significant allergic reactions during the year plus we tried to understand what foods he was allergic to, and, how to avoid even trace amounts of those foods. And that painful process interfered with his early learning processes.

Eating: Imagine working on chewing and swallowing new food when much of what you have eaten or drank was vomited back up your throat. Interactive Play: Imagine playing Peek-A-Boo while your lips are still itchy and swollen from your lunchtime jar of applesauce. Gross Motor Skills: Imagine mustering the strength to pull your body up into a standing position when you were awake most of previous night scratching at your eczema, hungry and yet a little nauseous.

Speaking: My first child taught me that children could make babbling sounds, which can turn into a functional vocabulary. She often made these sounds when well rested and energized. Now imagine the fog of an antihistamine. In fact, had it not been for my developmentally punctual first child, I might have overlooked Eden’s one-year old quirks like, stiffening dramatically at noises, dropping his toys and bottles, crying out when in open spaces like parks and calming only with particular arm holds or stroller positions. These quirks turned out to be a pervading sensory sensitivity. The world may have felt as threatening to him as his food. So Eden did not do many things a healthy child would predictably do. And for a period of two years he received various therapies from New York State licensed therapists. With therapy, by the time Eden was three years old he could eat, move, talk and function like . . . a three-year old.

Years later, this past summer, I bumped into Eden’s speech therapist. After a few minutes of talking, while I was pulling out my iPhone to show off a picture of Eden diving into a pool, she looked into me. “You know you once said something to me that I’ll never forget. When we first met and I asked you about your goals you said, ‘I just want for Eden to be able to tell me where it hurts.’ ”

Our eyes welled simultaneously with tears even as I assured her, “Oh my god. I don’t. I don’t remember saying that. But I can tell you that he has no problem doing that now when it comes to certain stuff. He’s very specific.” We laughed together.

Also this summer I read Sandra Beasley’s memoir, Don’t Kill the Birthday Girl. In it, she narrates what it was like to be among the few severely allergic kids of her generation and she offers up medical and research information along the way. In the past I’ve hazarded guesses at Eden’s inner landscape and given so much thought to what might feel like to be allergic to so many foods. I’ve listened to the wisdom of the parents in my support group and to the allergy community at large. And of course, I’ve relied on the open bond with Eden to guide and support him.

Sandra Beasley gave me insight into the physical sensations of minor allergic reactions . . . like the “bubbles” that rise in her chest. She also described what those "close calls" feel like and unfortunately, despite my best safety practices, Eden has a few of those in the past years. Sandra Beasley pointed out the illogical but understandable moments she “hid” her reactions from potential boyfriends and she validated a host of other food allergy behaviors that I’ve already witnessed while bringing up Eden.

I'm aware that Sandra Beasley has also stirred some controversy within the allergy community. I'm not going there, insead right here -- Parts of her book may help Eden “tell me where it hurts.” And for that I’m grateful.

Feeding Eden – the book!

I've neglected to post of late and while this hasn't been an allergy-centric summer to date, I've updated my blogger profile to include the title and publishing date for my food allergy memoir:


Rat-a-tat-tat...Feeding Eden will be published in March 2012 by Sterling Publishing.

About five years ago I decided that I had an interesting story to tell. Many people believe that once a child is diagnosed with food allergies (which, for my family, was a prolonged process) that the rules are clear: Avoid the allergens! But I've found so many other parents who find that family life, and even simple choices like family dinners, become complex and rife with emotion. And yet, in the almost eight years of feeding my son Eden I've learned that food allergies have given my family a surprising and joyful kind of solidarity.

So I'm looking forward from this summer of personal distractions (see above re: ...hasn't been been an allergy-centric summer) to having a food allergy dialogue with families who continue to grow with this medical condition.

“100 Delectable Recipes For Your Gluten-Free Kid”

A nod to our gluten-free cousin who visited last week - My family lived his gluten-free diet for two days and learned so much: All restricted diets are challenging and gluten-free is no exception.

Though it isn't brand new, my family and I looked over this link from The Nursing Schools Blog and agreed:

This link "100 Delectable Recipes For Your Gluten-Free Kid" could be very helpful:

All in the Family: Gluten-Intolerant Cousin Visits Food Allergic Cousin

Ours is a slightly more complex tale than City Mouse and Country Mouse. Our adored cousins from rural New Hampshire are coming for a rare visit. And one of them cannot tolerate any gluten. Corn and corn syrup included. Though Eden is allergic to tree nuts, peanuts, soy, eggs, dairy, sesame, round legumes and salmon -- grains are "no worries." Wheat, corn, oats, rice, barley, Eden eats them all. In fact, cheese-less pizza, fresh baguettes, wheat-based pasta and tortillas are among his favorite foods.


So as I anticipate the cousin slumber party in my home this week, I'm considering simple home dinner options after a long day of outdoor sightseeing activities. (Read: I'm too lazy to want to really cook.) We could pick up from Chipolte Mexican Grill, as long as our gluten-intolerant cousin doesn't mind using his own gluten/corn free tortilla or having his Mexican fare loose on plate instead of tucked into tortillas. Or I could cook up a huge batch of gluten and gluten-free pasta and make salad on the side. Or, since we live in New York City, it would not be unheard of to order from two or more pizza parlors if just one can't accommodate all our needs.

But I'm not worried. Whatever dinner plan we make will be secondary to the pleasure of seeing our "country cousins" and spending time with family.

Kids with Food Allergies: Avoiding Danger AND Living with it

This past month, I posed a question on The Huffington Post: Should Schools Be Nut Free? I had a busy week after writing that article. So I tweated about my article - once - and that was that. One hundred comments later nerves were certainly exposed.

Not surprisingly, the majority of reactions were camped in extremes. A few readers who, like myself, can envision a middle ground wherein day care centers, or the lower school grades are kept free of nuts. These readers suggest we prepare our allergic children for the less safe worlds to come. But then there were the Live With It! The World Is Dangerous Anyway! readers who play Tough Guy with their words.

I can still recall that when Eden was first diagnosed with anaphylactic food allergies, besides learning about micro food ingredients, emergency medications and the physical signs of anaphylaxis, there was a point in every single day when I worried about him dying. I could have those death thoughts anywhere, without warning. I thought about Eden dying in store checkout lines, in the kitchen and when Eden woke up in the night. He was just past one year old. Of course my husband Drew worried too yet we skirted any mention of Eden’s death because we did no know how else to go about our days, how to brush our teeth and check our email in the same life where we openly acknowledged our son’s medical odds.

And of course it was a phase. I did learn how to live calmly, yet vigilantly, with Eden's allergies. I learned to live without that intense fear hawking me.

But a few years later, when looking at school options for Eden, my death thoughts returned in living color, in dream-like sequences of Eden, face swelling, searching unsuccessfully for a lunch monitor. There was . . . Eden nearly breathless, trying to find his way to the school nurse's office . . . but then there was Eden stonewalled by another class coming down the only stairway. There was . . . Eden's throat closing during a class cracker break just as the teacher stepped out to the bathroom. Stuff like that. When we allergy parents send our children to schools and camps we view everything from architecture to safety policies to snack menus through the lens of our child's physical survival.

So yeah, Tough Guy, we see it. We allergy parents get that "the world is a dangerous place." And yes, we "live with it" and we live in it. In fact, that is precisely what I want for my son to do too.

The Ten Worst Cities For Allergy Sufferers

It's a pollen filled spring here NYC. Both my children have been rubbing and rubbing their red and irritated eyes. My daughter sneezed fourteen time in row the other night. Fourteen. But I'm told the change of seasons could be worse depending on where you live:

The Ten Worst Cities For Allergy Sufferers -- http://bit.ly/fl11a3

“For the times they are a-changin”

Wow. Sometimes I think I'll never stop amazing over the recent increase in food allergy products, resources and overall allergy awareness. Eden was diagnosed with multiple food allergies in January of 2004. Since that time, labeling laws have taken effect (despite some minor shortcomings) baked goods have become readily accessible, and the general public has become much more savvy about the food allergic condition.
But what truly blew me away last week was the discovery of a new online resource for travels to Disney World called

Everything, and I mean everything, that I did in preparation for our first Disney Trip (FYI our first out-of-state vacation) is, more or less, laid out on that wonderful site. You can learn where you can find safe foods within the parks, how to navigate the restaurants, tips for avoiding exposure and all the rest.
I know, I know. We want a cure, a treatment, and an end to our constant vigilance and fears. But in the meanwhile - in the words of the great Bob Dylan - maybe we should sing another line from his song: "As the present now / will later be past...For the times they are a-changin."