To kiss my son goodnight… To kiss him goodnight, a peck on the lips or a kiss on the cheek without having to worry that a huge hive will appear, will spread, will swell his face into a grotesque balloon, constrict his breathing, kill him as he drifts off to sleep with me down the hall, unaware as I get ready for bed myself. Unaware, until I go in to check on him one last time for the night. Unaware, until it’s too late.
This, this is the nightly fear that only lets me kiss my son goodnight on the top of his head, where his hair, I hope, will serve as a shield, as protection from my poison lips. My lips through which passed something my son is allergic to, some food containing milk, or eggs, or nuts. I might have eaten it for dinner, or dessert. Maybe I had something at lunch. Will it be a problem? Is tonight the night I want to find out?
I brush my teeth before I read my son his bedtime story. I wash my hands. Is that enough? I ate ice cream for dessert. Ice cream! Why did I eat ice cream? Did I wash it all away? Could there be one invisible particle left, just waiting for an opportunity to jump from my lips or my hand to my son’s face? The side of his face, where he might touch his hand, then his lips, or his eyes, introducing that invisible allergen into his small body, wreaking havoc…
How rational is this fear? I’ve seen my son break out in hives from a kiss before. I don’t want to be the cause of that tonight. Or ever.
How rational is this fear? Tell me, how rational is it that a bite of food, or the residue left behind from a food, can kill a child? Live with that fact, everyday, and see if the fear doesn’t creep up on you from time to time.
Now it’s morning, or it’s noon, or it’s 6:00 p.m. and time for breakfast, lunch, or dinner. We eat at home, the food is safe, and yet… I cannot share my food with him. He cannot have a bite of my pancakes, of my sandwich, or my salad. My fork, it’s passed my lips, it’s touched my plate again and again and again. Who knows what allergen might be hiding there now, from something I ate earlier, lingering and waiting for the perfect opportunity to get transferred to the safe food on my plate from my fork, the allergen transporter?
I’m cooking dinner, careful, oh so careful not to stir his spaghetti with the spoon I used to stir the pasta I am cooking for myself. Did I just mess up? I am not sure, but I cannot take a chance. Let’s start over, dump his spaghetti out, start a new pot of water to boil.
And now we are eating. I’ve sprinkled parmesan cheese on my pasta. Don’t get too close son, this plate, it’s poison. You bumped the edge of my plate with your hand as you were laughing and telling me a story about something that happened at school today. Get up, go wash your hands, just to be safe. On the safe side.
Trying always to live on the safe side. It takes planning. Every. Day.
The safe side means: not sharing food, not trading food, not buying the school lunch, only eating food from home, not going to McDonalds, not getting a Happy Meal. It means reading labels, three times over. It means the loss of spontaneity. It means bringing a safe cupcake for my son to eat at his friend’s birthday party because a ride in the ambulance is not a fun way to celebrate your friend turning seven. It means not going to the birthday party at Chuck E. Cheese, milk capitol of the world. It means never leaving home without an Epi Pen. It means always being prepared for the worst. It means kissing my son on the top of his head, hoping his hair is a protective shield.
My family, like millions of others, live like this on a daily basis. Food allergies are on the rise, and experts do not know why.
Frankly, I don’t care about the why. I want to give my son a peck on the cheek without inventorying in my mind all the foods I have recently consumed. Without worrying the kiss will leave its mark.
I want a cure. I want the experts to continue the research they are working on, the studies and the experiments, the work they are doing to find a cure.
The Food Allergy and Anaphylaxis Network (FAAN) educates those families newly diagnosed with food allergies, and guides them using a variety of resources, into safely navigating this life. This life where food is the enemy. Where a single bite of food can kill.
FAAN is the organization I turned to when my son was diagnosed at 9 months of age. They taught me how to make those safe cupcakes, how to avoid his food allergens, how to read an ingredient label. FAAN keeps me up to date on the latest research findings, and lets me hope for a cure because as an organization, they are funding research studies, they are working with the experts, they are working to find a cure.
A cure that might one day let me kiss my son goodnight without fear.
So this Christmas season, as you are out shopping and wrapping gifts, as you are baking those holiday cookies with butter and eggs and nuts, consider making a donation to an organization like The Food Allergy and Anaphylaxis Network. To find a cure. So I can kiss my son goodnight.
Author’s note: This post is an entry in The Generous December Group Writing Project.