Recently we were driving a child friend home when child friend asked "how come your dad is driving the minivan if it is your mom's car?" My youngest child replied, "my mom hates driving and cooking." They discussed this further, with responses like "well, they are both a lot of work, and she just doesn't like it." So true, child, so true.
Food runs my life. There are five diagnosed medical food issues in this family, up from three a year ago. Food is a lot of work in this family.
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On Halloween we went to a party at a friend's house. Peter didn't eat any candy, or any of his forbidden foods. After trick or treating (where he didn't eat any candy), Peter complained that his lips were tingling, a sure sign of an impending allergic reaction. He didn't have any swelling or visible signs, so we dosed him with Benadryl and he felt better.
The next night we had a lovely dinner of salmon, kale and lentils. The Mister was on a work phone call upstairs during dinner, so we were being extra quiet. In the middle of dinner Peter started complaining that his lips were tingling again. (Bi-phasic reaction!) I noticed that his face was getting red and blotchy, his lips were swelling, and then white hives started popping out on top of the red blotches. "You need an epipen," I said, getting the pen out of my purse.
Peter screamed and took off running. I chased him down, tackled him to the sofa, and engaged in hand-to-hand combat trying to get his thigh exposed. I had an epipen in one hand, while using my other hand to try and hold both of Peter's hand from pushing me away. I sat on him, threw my legs over his, leaned my upper body into his, and jabbed him in the leg. If you have ever tried to stab someone with a sharp object, it helps if you have their cooperation. People who don't want to be stabbed are pretty wiggly.
At this point, Peter is screaming at the top of his lungs. My other two children figured that if one child is screaming, that's a good enough reason for them to scream in panic too. The screaming was at home invasion levels. I kept asking (loudly) for someone to go get the Mister, but really, it was just all screaming. I called 911 myself. The Mister was greeted by the EMTs when he came downstairs to see what all the commotion was.
We spent six hours at the hospital and were released late that evening. I brought Peter into our bed and laid awake all night with him close, my hand over his heart, as if I could keep him safe with the force of my will.
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I do my best to keep Peter safe. We don't eat out with the kids. I make all our meals from scratch. I read every label. My kid knows to not even ask for candy, or any store-bought treat, because the answer will be no. I do my best.
Sometimes my best isn't good enough.
Sometimes my kid almost dies, despite my best.
Every time I think to myself that maybe I can ease up on the reins a bit--maybe we can be normal and I can let my life revolve around something other than food--something happens to remind me that no, we are not and will never be normal.
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I don't want to blame all the food woes on Peter. I do my own part to participate in the drama. A few months ago I was tentatively diagnosed with another autoimmune disorder. This was not a huge surprise, as autoimmune disorders tend to cluster. The surprise part was when my doctor said "this disorder can be managed with an extremely restrictive diet, so here is the list of all the things you should not eat."
The list of things that one should not eat with that particular disorder was...well, it would be shorter to list the foods one CAN eat. In fact, I can list them all right here in one phrase: leafy green vegetables. Don't plan on putting anything ON those leafy green vegetables to make them taste palatable.
I took that list out to the car and read it carefully. I noted that at least fifty percent of the delicious foods on the list I have
already cut out of my diet because of a different autoimmune disorder. The things remaining on the list were things I greatly enjoy, like butter, lox, condiments, and fruit. What kind of horrendous disease makes you give up fruit???
I lost it.
I am not giving up butter. And my life ALREADY revolves around food we can't eat--I don't wan't to reduce what we CAN eat by another seventy-five percent. Also, while this disorder won't kill you, people who have this disorder have a dramatically increased chance of being diagnosed with one of the big autoimmune diseases that do kill you. NO THANK YOU.
I finally saw a specialist, and it turns out, I do NOT have the tentatively diagnosed problem. Woohoo! What do I have, then? Unknown, at the moment. My doctor said, "hmm, aren't you the complicated case." But at least I don't have that autoimmune thingy, right?
My doctor also handed me the "food for people who have your problems" sheet, and guess what? It was the same damn sheet.
I'm not giving up butter.
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This is not even half of the food issues this family deals with.
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Food occupies a very large portion of my time and mental energy.
