Tuesday, July 12, 2011
See those two people in the photo? Those are my kids and the photo was taken a few years ago. Back then, I had to be more involved with my child's care and protection at school and in the world. As she is now much older, I have become her helper and she has become her best advocate. Still, I feel misunderstood many times in my role as parent of a child with a life-threatening medical condition.
My family has been dealing with my oldest child's severe peanut and tree nut allergy for several years now, and during those years I've read the angry commenters on news forums and heard in other places how crazy parents want to keep kids with food allergies in a "bubble." I've always hated the term "bubble" because I find it a) insulting and b) inaccurate. No parent, including myself, wants to keep their child in a bubble. The parents I know, parents of kids with food allergies included, want a happy and full life for their kids. But when we deal with food allergies, the opposite is often said of us. Unfortunately those comments sometimes come from the people you'd least expect--like adults with food allergies.
I bring all of this up today because I have been faced with the task of responding to an interview I participated in for a book about food allergies by Sandra Beasley. Sandra contacted me because she said she had no experience with peanut allergies (but had experience with a lot of other food allergies) and said she wanted my take on certain things like school, baseball games and airplanes.
We actually had a nice conversation. She and I had a lot to talk about. My interview appears in a chapter called "The Great Peanut Scare." I don't know who chose that chapter title, but to me, the wording implies that concerns about peanut allergy discussions are overblown. Obviously, I don't agree with that for both personal and medical reasons.
First off, I want to say that Sandra's book offers her own opinions and her experiences as it should. I'm a writer too and that's what I offer. She is certainly entitled to that. What I and many of the mothers I heard from today feel, however, is that the chapter actively seeks to discount food allergy accommodations made in schools, airplanes and yes, baseball parks.
Many peanut allergy accommodations are taken to task in this chapter but the most hurtful one for me is the author's shock at the fact that my daughter hasn't had anaphylaxis (though she's had milder reactions) in several years. The implication is that such a situation can only be achieved if a child living in, yes, a "bubble." She states that she had one reaction a week as a child because her parents expected "different options for her," I guess implying that I don't expect the same "options" for my own child.
In our case, one nut allergy reaction a week would not only prove traumatic for my child but it could prove deadly. Do you know what I think about my child not having anaphylaxis in several years? I'll quote what my allergist said at our last visit: "Good for you. You must be doing a great job." Am I supposed to feel wrong that my daughter isn't being rushed to the ER weekly? If that were actually happening, you can bet I'd be re-thinking my approach.
I definitely cop to being careful as a family not to expose my daughter to allergens just for the heck of it. Why would we? But we travel, go to restaurants, encourage our daughter to participate in extracurricular activities, play dates, Girl Scout camp, and anything else she wants to do. To imply otherwise is not true for us and for most of the parents I know.
The chapter goes on to dismiss peanut-free ballpark sections as somehow damaging to children who won't then be able to live in the "real world." To that end, my husband (who is pretty laid back about most things, truly) came home from a Cubs game with a friend one day and said he wouldn't take our daughter to a "regular" game. Why? Because peanut shells fell into his food and drink for the duration of the game, just due to the wind stirring them up. Sometimes peanut allergy dangers do exist, and accommodating them isn't just to soothe parents' irrational fears.
And, of course, the "real world" has changed. When the author was young, food allergies were not as numerous or discussed and/or accommodated and that must have been tough. I don't feel that the past must dictate the future, however. I also want to say that I have never advocated anyone, much less my own child, to live in a "bubble." In fact, an honest acknowledgement of my daughter's allergies and the precautions she must take have helped her succeed in the "real world."
I wish that anyone with a food allergy--parent, adult living with it or child-- would stick together to accomplish the goal of a society that is more tolerant and aware about food allergies. There are so many people who want to pull us apart and divide us--so I hope we don't give into that.
I'm not sorry my voice was shared in Beasley's book. I offered my views and bottom line, it is not my book, it's hers. Her book tells her story, not mine. My story is and will be shared in the articles I write, the blogs I post and a book of my own, still in the works.
I fully support every parent who tries to prevent their child from suffering a fatal allergic reaction--they do happen (and it happened in Chicago recently). I don't think it would be comforting to me if my child suffered a fatal reaction that happened because I don't want to be one of "those" parents.