I wrote this essay about 6 years ago to express how I was struggling to manage the multiple food allergies in my family. Since writing it we know that our son is allergic to peanuts, tree nuts & soy. Our youngest daughter is allergic to dairy, eggs, peanuts & tree nuts. The struggle has not ended but with many researchers and health care professionals focussed on finding a food allergy cure there is hope.
When my first child was born, I was relieved to count ten fingers and ten toes, see a fully formed mouth and nose, and beautiful bright eyes. He was healthy.
One morning, shortly after he turned two, I made him a jam sandwich with the same knife I used for a peanut butter sandwich. I washed dishes; he started to eat; I answered a phone call. He started crying “mommy my tongue hurts”. I thought he had bitten his tongue while eating. “It’s okay, just keep eating,” I called. “Mommy, my tongue is hurting” he cried again. His voice sounded different. I looked at him and saw he had a rash around his lips. He was holding his tongue with one hand. I pulled him out of the high chair and saw the rash was on his neck. I took his shirt off and saw red blotches on his chest. I knew then he was allergic to peanuts.
The pediatrician said he would need an epi-pen. That I would have to inject him in his leg if he had another reaction. That I should take him to the hospital immediately after the injection or call 911. That without the injection he would go in to anaphylactic shock and be unable to breathe. That he could die. That I was not to give him any nuts until he saw the allergist and in the meantime get an epi-pen or two.
The allergist confirmed my son was allergic to all nuts and told me “not to live in a bubble.” She told me to tell everyone my son had a life threatening food allergy. She told me to tell his teachers, his friends, our friends, our family, his babysitter, our dentist, the lady who cuts his hair, the girl playing with him at the park, the boys down the street who wanted to share their snack with him …. Do not live in a bubble.
I came home and told my husband. We cried. We could not believe that a morsel of food could kill our son. We could not believe that epinephrine – used on emergency room patients who have gone into cardiac arrest – had to be on hand all the time.
Our home became nut-free. Other people’s homes are not.
All social situations revolve around food, so outings are carefully planned. Going to other people’s homes is stressful. We have to ask in advance what is being served. We have to ask the host not to serve nuts. Or anything that may contain nuts. Or anything that may have been in contact with nuts. Or anything made on equipment or in a facility that processes nuts. It’s not easy for me to ask this of other people – I feel like I am a pain and they think I am overly cautious.
It is difficult to trust others to protect my son. Do they read labels as carefully as I do? Did they make a sandwich for him with a knife they used for peanut butter? Did they wash the mixing bowl thoroughly before making the “nut-free” brownies? Did they serve the chips from the bag that was opened while they were eating cashews ?
Because siblings have a higher risk of food allergies than the general population our second child was tested at 18 months. She does not have food allergies. Our third child is allergic to fish, tree nuts, egg and dairy. Our son has recently developed an allergy to soy.
The allergist does not know why they are allergic to these foods. The allergist says there is no cure at this time. The allergist says they may grow out of their allergies but lately allergies are persisting beyond childhood. The allergist says it must be hard.
I cannot put our youngest daughter in daycare – who heard of a daycare that does not serve milk?
Birthday parties are supposed to be fun; however, to keep my kids safe I pester the host: “what are you serving? Is it okay if we bring our own cupcakes? Is it okay if we leave before the food is served? Oh, it’s a drop off party? May I come before the party and teach you how to use an epi-pen?”
Or we just don’t go.
I FEEL like living in a bubble with my husband and kids. My home is the safe bubble. In my home all labels are read. All pots and pans, utensils and serving spoons are washed and re-washed. There is no cross-contamination. Our older two wash their hands and face thoroughly after eating something to which the youngest is allergic.
Their allergies are always on my mind. Every time she scratches – maybe it’s dry skin; every time she rubs her eyes – maybe she’s tired; every time he coughs – maybe it’s a cold; but I also wonder, is a reaction coming on? What if I don’t recognize it? What if he is with friends and eats the wrong thing? What if he is at school and no-one recognizes he’s in trouble?
There are no spontaneous outings or taking a break from cooking and ordering in. We cannot go anywhere without taking our own food. We do not go to restaurants. The stress of eating out is enormous. Each time we have tried has resulted in a visit to the ER.
Of course, I am grateful they have all their fingers and toes but I feel sad because they are not care-free. Their food restrictions limit their lives in many ways. They cannot experience the joy of eating ice cream from the ice cream truck or grabbing a Tim-Bit at the soccer game or ordering popcorn at the movies.
But my children are my teachers…
I am always inspired by my son and his ability to see the bright side. Last month, I took my son to a birthday party. All the other kids were dropped off; I stayed at the party because the hostess was unsure of what food he could eat. The cake was not free of his allergens, so we left early. I asked him if he was upset about missing out on the cake – he said no – it had too much icing on it and he likes my homemade cupcakes better anyway. He gave me a big hug and said it was cool that I was the only parent who got to stay for the whole party.