Can I tell you something that broke my heart tonight?
My daughter wanted to watch a movie together. It is one she’s watched before, although I never had. A scene came up that looked happy enough, but she turned to me with worry in her eyes and said, “Uh-oh, a scary part is coming.”
As the scene continued, she kept shifting on the couch and glancing at me, as if preparing me for it. My first thought was that the evil wizard would make an appearance, so I readied myself should she need to bury her head in my lap until it was over. But a bad guy never came.
You know what did? A corn dog.
Not just any corn dog, but one which had been fried in peanut oil, setting off an allergic reaction in one of the kids on screen.
Worse than imaginary evil wizards or monsters, this was her very real trauma coming to life before her eyes. You see, although the scene cuts away soon after the kid takes his first bite, she knows what’s coming.
She’s felt the piercing pain of the EpiPen too many times in her short little life. She’s felt the intense fear that comes with her lips swelling, her throat closing, hives covering her body as her distress is mirrored in the eyes of the grown-ups around her who spring to action. She knows what comes next because she’s lived it – several ambulance rides, nights spent in hospitals, attached to an IV and sometimes with oxygen tubes sitting on her lip, just below her mini nostrils.
Living with severe food allergies requires constant vigilance and a hell of a lot of self-restraint for the kid who lives with them. It also requires a solid allergy plan. You know, having antihistamines and epinephrine on hand (as well as at school and in the car). Extra nut-free snacks packed in her backpack in case the food situation becomes a little nebulous. A full list of numbers for the nearest adult to call — most importantly 911 — if she happens to have a reaction while in someone else’s care. This is a plan we’ve been perfecting since we discovered our child’s allergy six years ago.
I haven’t considered ours complete until we’ve cultivated and nurtured meaningful friendships with ours and our daughter’s friends, and those friends’ families.
You see, not everyone understands or tolerates food allergies in other people if they haven’t dealt with them personally.
“Oh, your daughter is allergic to nuts? Don’t worry, we’ll put out some potato chips, too.”
Before attending any gathering that involves food, I always let the hosts know about our daughter’s allergy. In new friendships, while I will remind folks of the allergy several times, I don’t always feel like I can insist on nut-free menus. So inevitably, upon arrival, I often see the peanut dish right next to the chips and other snacks; guests dipping their hands into all of the bowls freely without a care. Obviously, for us this won’t do and I usually end up feeding our daughter the snacks we’ve packed – while keeping a close eye on her in case another kid’s peanutty hands somehow made their way to her face. My husband and I have been known to request hand washing — if a situation seems particularly daunting — before they touch our child for a hug or to play.
Then there are the folks who are truly trying to be so thoughtful. Perhaps you are new friends who’ve invited us to dinner. As always, we’ve reminded you again and again of the allergy, hopefully ensuring we won’t show up with almonds in our salad, or a peanut sauce garnishing the main dish. This all goes well until you proudly bring out your signature pecan crumble.
“Don’t worry, I prepared a nut-free crumble for her!” you cheerfully exclaim. I nervously eye the nut-filled version which is sitting way too close to hers and looks, by the way, identical. What if once the plates are served, we mix them up? How can I know you were careful about cross-contamination when you were baking? The answer is, I can’t.
You were so kind to invite us over and prepare a lovely meal. You were so very thoughtful to think of our nut allergic child and go through the trouble of making an alternative. But … couldn’t you have skipped the nuts altogether? Just for tonight?
The truth is, until we’ve established a solid friendship, become the kind of friends who won’t take offense if I expect nut-free menus at your parties even if my daughter is the only attendee out of 100 who is allergic; until you become the type of friend who will hide all of the nuts in the house in a locked cabinet before our daughter comes over, we don’t consider our allergy plan complete.
Believe me, I understand our responsibility in this and so does our child. It is now she, not us, who is the first to tell every server as we sit down at restaurants that she has a nut allergy. She asks what type of oil they use for frying; she waits patiently until the server goes and checks with the kitchen.
She knows she needs to take responsibility for the food that goes into her mouth because unfortunately, not all the grown-ups in her life have. Whether it’s because caregivers are unaware of what ingredients go into a dish (pesto being a recent culprit), or can’t be bothered to read ingredient labels (I have been known to pick out of the trash if you’ve given our daughter a snack without checking), she has been unwittingly sent to the emergency room by adults she loves and trusts. Adults we love and trust. Or… trusted.
Perhaps not all allergy moms are as demanding or protective as I am when it comes to expectations from friends and family. But, knowing we have people in our lives who will go that extra mile for her is a necessity. We will continue to socialize, even in scenarios where nuts are on the menu, because our whole little family needs to accept that living with food allergies means there will be close calls, that we need to remain vigilant, and most importantly the world does not revolve around us.
Having those special friendships at least allows us to enjoy ourselves, really relax and enjoy ourselves, every once in a while. And that’s as much a part of our allergy plan as the Benadryl and EpiPen we pack every time we leave the house.
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