When other people Just Don’t Get It…

frustration_relief2For the majority of people not living with allergic kids, the concept that a child could get very sick or even die from their allergies is foreign at best. They may understand on an intellectual level, have seen it on the news, heard about it from others, but only have the vaguest understanding of what it feels like. Parenting is a tough enough job without this added degree of difficulty!

When my son was very small, he was covered in eczema from head to toe, most noticeably on his face. I came to dread leaving the house for the number of stupid comments that admittedly well-meaning folks were wont to utter. I used to fantasize about the various ways I could respond to this frequently-heard gem:

“He’s got a bit of a rash, there, eh?”

At first I would respond with stunned silence. Later, it became more of a vague smile and a nod. And then, as the comment came with staggering frequency, my fantasy responses started to run through my mind:

“Oh, really? I hadn’t noticed!”
“No that’s just the colour of his face.”
“Oh my God! What IS that?”
“Unclean! Unclean!”

(maybe better to stick with the smile and nod on this one…)

Occasionally I would encounter an intelligent soul who would say “Eczema, huh?”, or “Allergies”, and who would sometimes engage me in conversation about allergies. But mostly the response to peeking in to his car seat/stroller to see the cute baby, and encountering the red, scaly-faced little guy was either something like the “bit of a rash” comment, or to politely pretend not to notice, or to tell me how cute he was “anyway”.

What should have been my response, however, to the elderly gentleman who encountered us in a grocery store and saying, “look at those little red cheeks!”, actually pinched his red, sore little cheek?? As I was carrying my son in one arm, and holding a can of tomato sauce in the other at the time, what to do? Bop him in the forehead with the can and screech “back off!”?…Perhaps not. What I DID do was pull my son back and say (somewhat stridently I must admit), “Actually that’s eczema, and it’s very sore!” The fellow barely batted an eyelash, told me what a cutie he was, and went on his way. I did manage to refrain from hurling the can at his head, but only barely. In my own defense, I was a little stressed out at the time. This occurred just before his being hospitalized for the second time, when he was not quite 6 months old.

Strangers are one thing. But it can be so much more difficult when it is people you know who don’t understand what it means to change your life all around to suit the needs of a highly allergic child. We all alter our habits when a child comes into our worlds – or at least we should if we’re planning to be good parents. But an allergic child means we need to rethink our entire lifestyle.

In our case, we had to eliminate all detergents (SLS) from our daily lives, changed our eating habits drastically (especially me, while I was still breastfeeding my son), and carefully watch the way we prepare and store foods. Some families opt to go completely “allergen-free” in their homes. This is easier said than done for a kid with multiple food allergies to common foods. The prepared foods that are “safe” for my son are usually also three times more expensive, and our budget simply isn’t up to feeding all of us in that manner. So we need to be vigilant about keeping his foods separate in storage, preparation, serving and cleanup phases. And we have to keep our foods – at least the ones he’s allergic to – clear of him.

It sounds complicated, and I suppose it is. But after more than two years of doing this, we have simply built these cautions into our daily routines, and barely need to think about them. At least while we’re at home. Leaving the house is an entirely different matter.

Visits to other people’s homes – unless they are also families living with allergic kids – entail detailed preparation: packing and bringing our own foods, increased vigilance over him around other people’s food, and diligent hand-washing for all of us (with cloths brought from home to avoid cloth washed in detergents). And of course, ensuring we always carry his emergency medications with us (Epi-Pen Jr., Hyland’s Hives remedy, Salbutamol). Overnight visits mean we need to bring all of his bedding with us in addition to foods, towels & washcloths, soaps, ointments & moisturizers, medications, and the rest of the things one usually packs for traveling with kids.

But even with all these preparations, reactions can occur. A recent trip to a local park resulted in a very strange reaction – bright ‘strawberry’ red face, swelling, and hives. Did he get into something at the picnic table? Run his hand through a smudge of something left by another child on the play equipment? We will never know. Other trips result in reactions to animals we either meet on the way (my son LOVES dogs!), or in the homes of friends and family. Saliva contact, from being licked by some friendly pooch, makes him come out immediately in bright red hives and rashing. Prolonged exposure can trigger an asthma episode.

We learn as we go. We try to explain all our convoluted preparations and precautions to those we spend time with, especially when that time will occur in their home, not ours. But still, not everyone really ‘gets it’. Some may even believe that we are going overboard. Perhaps we are sometimes. But I’d rather go overboard in my preparations than deal with an allergic reaction, especially a serious one. It’s a matter of perspective.

For those of you dealing with similar lack of understanding, you’re not alone! But just stay the course. Your kid’s health is more important than anyone else’s opinion of you or your methods. Trust yourself and your instincts. You really do know more than you think.

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