Sunday, March 6, 2011

Yes I'm neurotic, now please stop rolling your eyes: A plea from a food allergy mom

This may come as a shock to you, but I am quite neurotic.  While I hate to stereotype, I think it's an unspoken prerequisite of being a New Yorker and (genetically speaking) being a Jewish mother does not exactly help.  And my Upper East Side address gives me bonus points in neuroses.  I am so neurotic, in fact, that even my most neurotic friends feel comfortable leaving their children alone with me.  That's how neurotic I am.

So when I express concern over the tiniest amount of cross-contamination in managing my child's food allergies, I understand the tendency towards skepticism.  After all, it sounds ridiculous to worry about using a particular blender to make soup when my child was only tasting half a bite of the soup anyway and the blender was washed with soap and water earlier that day.  Maybe I was taking it too far?  This was pointed out to me and my worries were dismissed as being overly neurotic.  I fought my instinct to stubbornly put my foot down and felt like crap as I second-guessed myself and wondered whether I needed to seek professional help for my neuroses.

I realized my instinct had been right about 30 minutes later when my daughter was crying from stomach pain and itching a single hive that was covering her entire forearm and getting angrier by the minute.

We were lucky, but I should have known better. 
Now, it sounds worse than it actually was.  We were fortunate that this was extremely mild and after watchful waiting it went away without even Benadryl.  But it just as easily could have gone the other way.  Once you have a reaction, there's no predicting just how serious it will be.  And my imagination instantly wandered to how would the situation have been different if she were in school?  After all, the reaction was so mild, anyone else would likely not have picked up on it at all.  Which means it would have been allowed to progress untreated if it did, in fact, get worse.

It had been a while since her last reaction, and I think it's a little like childbirth in that in hindsight you think to yourself "What's the big deal? It wasn't all that bad."

This incident brought the dangers back to reality.  I was reminded of the time she nearly passed out after eating a bite of pancake in a batch that had one egg in the entire batter.  I remembered the time her whole body erupted in hives after eating cheese that was picked up with tongs that had touched hummus which contained tahini (sesame paste).

But most of all, I was reminded that I AM RIGHT, DAMMIT.

The decision we made to send our daughter to private school after our assigned public school was completely hostile to our requests for epipens/training to keep our daughter safe?  Completely founded.  I remember after months of trying to get them to understand, doing everything the right way, we realize that the little trust we had was eroded so badly that no amount of accommodations they could be forced to make would make us feel comfortable.  There's no scientific way to explain it other than they just didn't "get it".  And in my experience, that is more dangerous than any other risk there is.

After this incident, and after reading about kids in the US and the UK that recently had reactions at school that tragically could have had better outcomes with proper preparation, I'm kicking myself over and over for letting myself get swept away with the skeptics, for starting to listen to the "is that really necessary?" eyerolls I've gotten over the years.  I'm reminding myself that no matter who thinks I'm crazy there's no substitute for maternal instinct.

So, to everyone who needs to accommodate us in one way or another, my message is: just give me the benefit of the doubt.  If it's all the same to you, don't question why I'm asking you to order pizza from one restaurant vs. another when they seem exactly the same to you.  Don't fight back when I ask you to switch your usual rice medley brand with another when they have the exact same ingredients.  Trust me when I say the store brand is not the same when it comes to food allergies.  Indulge me without judgment when I ask you not to use that blender.  Let it go when I politely ask you to buy packaged food instead of baking, no matter how safe you want to make your recipe.  Better yet, let me make it for you.  And to all the school administrators, bureaucrats, and social workers I've had to deal with these past six months, next time a mother raises the red flag and tells you I am scared to death to send my kid to school for even one day, you better damned well listen. 

The bottom line is you may never know whether or not I'm right or need to be committed.  But so what?  Why take the risk?

Just let it go.  Assume I'm right and everyone will be happy.   Come to think of it, think that advice should apply generally to mothers everywhere.

**Post-script: This article is intended for skeptics and even well-meaning people who simply don't understand.  I feel the need to add a caveat here that many people, including our new school, DO get it, and we are always so grateful and appreciative of those that do.   


Poker Chick said...

To answer some people's question: the blender had pureed walnuts earlier that day. And it had been washed, but by hand.

Wendy said...

When it comes to your own child you instinctively know what is best for them. You have the background knowledge to make the best decisions for them. Your child is the most important person in the world to you but not to everyone else. Therefore, always trust yourself when being your child's advocate. Without parents to stand up for us we would not be as safe and as successful as we are.

Catherine said...

Thank you for sharing this post. I too, am 'neurotic' regarding cross-contamination issues. My son is allergic to eggs and peanuts, and almost everyone thinks I am too paranoid about his allergies. But I agree, you never know when a reaction will develop into more than just hives.

It means alot to me, reading about other moms feeling the same way I do. My son doesn't have any friends with allergies so I look to the internet for some allergy friends who get it.