Remember when a peanut allergy was The Peanut Allergy? When it was so nouveau, so under-understood, we’d speak about it like it was The Plague or some dreadful affliction that only happens in other people’s families?
When my older son Lucas was first diagnosed with multiple food allergies (including The Peanut) six years ago, we were without Sabrina’s Law. Funding for food allergy research was microscopic at best. There were no nut-free Mars Bars (least they weren’t marketed that way), no allergy-safe schools, few support or education groups and no websites, magazine or online forums devoted to living with anaphylaxis.
That word itself – anaphylaxis – was only really known to people with it. Nut-free may not even have been a term yet. I remember checking our allergist’s (The Allergist’s) website after our first visit to find nothing more than you’d find today in a Wikipedia definition of The Peanut Allergy.
The expression The Peanut Allergy suggests it means one thing. But as most of us seasoned allergics know, every reaction, every person, every allergy is different. It is only through experience that you can really understand this. It is only through experience that you can even begin to grasp what living with a life-threatening allergy means to you.
And it is through experience that I’m happy to say we have grown up, big time, since Lucas’ 2004 diagnosis.
We, being the allergic community – which six years ago was disparate and anything but a community – the food manufacturing industry, medical research, government, the non-allergic world and, alongside, our own little allergic family.
In the early days, I was anything but OK with another child in our company eating something Lucas couldn’t have on account of cross-contamination. It was beyond heartbreaking for me to see my child miss out on something as important as dessert.
Why should it be in his face? Can’t the other kid live without ice cream this once? Is it such a huge sacrifice for other people to refrain from non-nut-free treats for an hour, so Lucas doesn’t have to feel deprived or reminded that he’s different? How’s he supposed to understand why he can’t have it too?
These projected concerns and restrictions on the people around us made up at least half of my allergy stress in the early years.
But my good friends were great about it. Most of Lucas’ friends’ parents were, too. And I’m not talking about refraining from eating nuts in front of him, which remains a given.
This was about the ice cream truck or the chocolate cake at the restaurant – the “may contain” stuff that he couldn’t eat – but would not likely cause a physical threat to him if someone else was. The stuff that today Lucas still can’t eat, but as a more mature allergic parent I take (as does he) little issue with.
Today, I am only (well, 97 per cent) concerned with my son eating safely and acting responsibility in a world riddled with his allergens. Likewise, Lucas is mostly concerned with what he can eat – not fixated on what he can’t.
I am no longer concerned with him feeling badly because Zack can eat Twix and M&Ms and he can only eat Kit Kat, Smarties, Coffee Crisp, Aero, Mars ….
Today, I am a proud and confident (ish) allergic parent in a world that remains dangerous for my anaphylactic 7 1/2-year-old, but has become 1,000 times more accommodating and allergy-educated than it was when we got started.
Lucas can’t have whatever he wants whenever he wants it. That’s allergic life. It’s also non-allergic life.
While most of his friends can eat whatever they like, no matter where it was manufactured or what it may have come in contact with, they have other limitations.
Little Billy’s dad lost his job last year and can’t afford to send his kids to camp and karate lessons any more. Tyler has OCD. Max can’t read or write yet. Anthony’s parents are going through a messy divorce. Sarah has serious weight issues.
We all have our crosses to bear, but after several years on this winding journey, Lucas is big enough to understand his challenges and I’ve matured enough to deal with his not being able to eat it all.
Today, Lucas still has several allergies, including a peanut one. The vigilance and prep work involved in his safety is as time-consuming as ever. But long-gone are the days I’d pretend I had a peanut allergy, too.
Having gotten over the fear of him finding out he’s different or recognizing that he can’t have something his friend or brother or even mother can, not only cuts my nut in half, it’s key to Lucas’ confidence as a maturing allergic kid.
We protect our allergic children from life-threatening harm, but we also must protect them from our own fears. This comes with time, with experience and with the very real belief that our anaphylactic children are not disabled by anything but anxiety and sour grapes. We may not know why our children have allergies, but it’s not hard to trace the genealogy of their feelings about them.
In a life with anaphylaxis, a positive attitude is truly the cherry on top of the Chapman’s chocolate Sundae treat.