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Tuesday, August 6, 2013

Being the Allergy Mom - Guest Post

My kids are allergy-free, but when they went to preschool, there were several allergies we had to be mindful of. I always tried to make our snacks universal for all, to avoid what Debby has graciously offered to write down for me...the seclusion of the kids with allergies, and the deadly consequences if that seclusion isn't followed correctly.


Let’s say you bring your family into a local deli to order lunch, and while they are grilling your sandwiches you notice a large, open canister of Rat Poison sitting right next to the bread and lunchmeat the cook is preparing.  When you bring it up, the lady at the counter waves her hand dismissively.  “Don’t worry,” she says, “we only use that on the left side of the grill.”

You drop your child off at her first day of pre-school, and while she’s gripping your hand tightly, the teacher talks to her about all the fun things she’ll do there.  “And you can play with cyanide,” the teacher says, kindly.

“Cyanide?” you ask with concern, “I can’t have her playing with that. I’m sorry but…”

The teacher looks at you funny and says, “Well okay. The kids who do that will stay at that table. We’ll make sure she sits alone over here,” she points to the next table over. “No worries.”

This is what it’s like as the parent of a child with a deadly allergy to an everyday substance or food.  Of course, we know in real life it’s not Rat Poison in the deli, just a jar of peanut butter.  That the children aren’t playing with cyanide at pre-school, but eating goldfish crackers and honey-mustard pretzels for snack.  They aren’t doing dangerous things – just innocuous, childhood things.  Normal things.

It’s us, the parents of the allergic child, who are seen often as overreacting, “crazy”, helicopter parents – god, can’t we just let it go?  But actually, most parents I know of children with allergies go through life in a constant state of underreacting. You have to, in order for your child to have any kind of life.

 “Oh, no problem, I brought his own food.”

 “Oh, her best friend has strawberries today for snack?  I’m just going to sit her over here away from that. No, no big deal… just if you wouldn’t mind washing her hands?”

“He’s at camp, but I made sure the counselors know what he can’t have and are trained in administering his epinephrine injector. I think he'll be okay."

After a while, it becomes part of your life.  Reading food labels is as natural as holding hands while crossing a busy road. Your kid knows to ask you  “is it safe?” before eating any food, the same way he knows not to get into cars with strangers. Just another danger.  Just another thing that can kill your child.  You think as long as you teach her right, as long as you know the signs, carry the epi-pen everywhere, you can handle it.  It will be alright.

And then a story like this hits the news. A 13-year-old girl did everything right: spit out the food after one bite, told her parents right away, her father – a doctor - administered her medication within the ‘correct’ time window.  And she still died.  A young girl barely beginning her life is dead  from one mouthful of a mislabeled rice cereal treat.  A family is grieving for their daughter who died from a peanut. This is not right, this is not fair, this is terrifying.

When I read that story I went into my son’s room, and held him while he slept.  I cried.   I second-guessed everything: summer camp, the family vacation we have planned, public school.  I half-seriously considered never letting him out of my sight ever again.  Every parent has had moments like this.

This will follow us into his teens, college years, adulthood.  I struggle to make sure he knows the ‘rules’ about food safety but not to become so draconian about it that he rebels in his teen years and ends up in a dangerous situation (according to an article in MedScape weekly, late adolescence and teens is the most dangerous time for kids with food allergies, due to poor decision making skills, alcohol impairing judgment, and even bullying. I may never get a good night’s sleep again).

There are lots of things to be scared of in this world:  a wayward bullet, a speeding car, childhood cancer, all the things that keep parents up at night.  I just have an additional worry.  Another reason to kiss my son goodnight.  Another reason to stay awake long after everyone else in the house is asleep.  A normal parent to a normal child, in a very dangerous world.

But we all just do the best we can.

Debby V. is a stay-at-home mom with a four-year-old son and another boy due this fall.  Thanks to her son's moderate dairy allergy and severe peanut allergy, her house never has the good candy at Halloween. 



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