Very familiar story to many here.

Posted on: Fri, 06/11/2004 - 3:40am
Lovey's picture
Joined: 03/22/2004 - 09:00


When food can kill your child

Being the parent of a child with severe allergies is heart-wrenching, harrowing and labour-intensive. But it doesn't have to be all doom and gloom.

Friday, June 11, 2004 - Page A20

I try to think of ways to convey what it's like to have a child with severe food allergies. Imagine, I want to say, sending your child out to play with a toddler who carries a loaded handgun. That, for my Rory, is the peanut butter from breakfast on another child's shirt. Imagine finding a babysitter when the requirements include spotting a reaction within minutes, jabbing the by-now-panicking child with a great long needle, phoning 911, then tracking you down. It's a lot to ask. Imagine grocery shopping, when there is no more zipping out for a few quick items, but a lengthy and complicated job of checking labels and contacting manufacturers.

Everyday tasks and events are no longer straightforward. Instead, there are rules, guidelines, planning, and responsibilities that you never dreamed of before. Wherever you go, you bring your child's food. Your child eats only food prepared or approved by you. If there is no EpiPen (a needle loaded with life-saving adrenaline), there is no eating -- no exceptions. You make a safety plan and you convey it to your child, to foster confidence and caution and minimize anxiety and fear. With the same goal of averting crippling anxiety, you control and monitor you own attitudes, discussions, and reactions, even when prevention fails, and before your eyes your child is swelling with hives and becoming ill.

You watch your child endure disappointments. The ice-cream truck arrives, and the kids swarm. Your child looks up at you, with that look that I find so noble and so heart-breaking: half-hopeful and half-resigned, and asks, "Am I allergic?" "Yes." But Rory's ability to handle it is inspiring. He says nothing more, no complaints. Never a cautious child (to put it mildly!) yet he puts no strange food in his mouth. When he was only 2, he would already correct well-meaning adults who offered him food with a cheerful "Rory can't have that!" (as though to say, "Silly you.") So what's even harder to convey is how it all becomes manageable. Take it from me: not a multi-tasker, not super organized, couldn't bake to save my life: if I can do this, anyone can.

The rules become less like restrictions, not because you become less rigid with them (on the contrary, they become absolutes), but because they are now a part of the fabric of life. You bring not only your child's food but goodies for all the kids; the host can put theirs away, and your child is no different. You learn to bake treats that don't taste like allergy health-food. (I knew I had to cave on this one when Rory knew the words for "computer" and "rocket," and not "cookie," as I hadn't found one to buy that didn't contain milk, egg, or nuts.) When his daycare has a waffle breakfast, we're there with our own waffle iron and made-up recipe for egg-free waffles (okay -- that one was a challenge!) that everyone likes better than the regular ones. On Easter, all of the kids on our block come over and decorate egg-shaped cookies that are works of art, and delicious.

I thought that nothing would ever transform me the way having children did. Such a profound, intense, life-altering experience could only happen once. But in the time since Rory was diagnosed at six months old, it has happened again. Oh, not right away. First I was just in shock. I'll never forget those words: "This child must never be left in the care of anyone who does not know how to recognize the signs of anaphylactic shock and how to administer an EpiPen."

My chin just dropped, and stayed that way for a week. Then I scrambled to make all the changes in the house, the grocery list, and the daycare. But it amazes me what this has brought out, over time, in myself, my family, and many others who care about Rory.

I have seen a profound capacity for empathy in his brother, Liam (who lost peanut butter, the staple of his diet, and, much worse, his beloved cats, as a result of his baby brother's allergies), and for vigilance combined with an unfailing positive approach in my husband. Family members go out of their way to make him feel included; neighbours check brands to give him at Halloween. Daycare staff have created a fabulous environment of safety combined with normalcy and inclusion. And in myself, what has it not changed? I am learning to bake! I may even learn to cook meals, one day. Heavens, I am finally finishing my degree after it sat on the shelf for more than 10 years, not because I have time or energy for career development, but because I want to work less so I can be more available to Rory when he reaches school age. But the real change is finding that I must make this happen. I must keep him safe, instill in him a sense that he can keep himself safe, and keep him from being deprived or left out, or from suffering anxiety.

And for my other child, I have to help him deal with his fears for his brother, ensure his life not be too restricted by the allergies, and have him feel no less special because he doesn't have allergies.

Don't get me wrong -- my family and I would give up home-baking and personal transformation and much more if it meant Rory didn't have to have allergies. But for now, when my eight-year-old (the one without the allergies) comes in looking for a snack, and is shocked and appalled that there is "Nothing home-baked?!" I chuckle to myself, and tell him (who, but for his brother's allergies, would never have known the concept "home-baked") that every cloud has a silver lining.

Joanne Dolhanty lives in Toronto.

Posted on: Mon, 06/14/2004 - 9:39am
Anonymous's picture
Anonymous (not verified)

Lovey, my apologies. [img][/img]
When I posted the article the other night, I had just read an e-mail from Anaphylaxis Canada and I was thinking, hey, it's 1:00 a.m. Saturday morning, and the newspaper the article was in was Friday's, so I was just hoping to get the information on here so people may be able to pick up a day old Globe & Mail.
I didn't think to do a search of the board, and truth be told, I was so half asleep, it wouldn't have mattered.
Again, my apologies. [img][/img]
Best wishes! [img][/img]

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