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.
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.
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.
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.
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.
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:
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.
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.
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: