I just finished reading an article in the latest issue of Allergic Living magazine titled “Get your Life Back” by Jennifer Van Evra. It talked about how food allergy diagnoses are stressful for both kids and parents and emphasized self-care.
Reading the article, of course, caused me to reflect on my own life and the role food allergies play in our lives. Is it stressful? Hell yes.
When my daughter was first diagnosed with food allergies to milk, eggs, peanuts and soy, it was so overwhelming, it was paralyzing. I had no idea what kind of food to give her and was terrified of her having a reaction. Now it’s more a way of life. I don’t feel stressed in any given situation, because I’m so used to these actions being a part of my daily activities and thoughts. When reading the article, I was empathizing with the other parents, but also thinking how much easier it is now that I’ve been living this way for 2.5 years.
And yet… when I took a step back and thought about the past few days, I saw so many ways food allergies played a part in our lives. Here are just a few examples:
– For dinner tonight, I made pizza. And not frozen or delivery, from scratch. Well, mostly scratch. Avery wanted some of the pizza with cow’s milk cheese on it. I explained (as neutrally as possible) that it had cow’s milk on it, but the other pizza had safe cheese. After she made a sad face, she asked if I would eat her pizza with her. I often eat the same foods as her so that she’s not the only one eating something different. I also froze the rest of Avery’s pizza to bring to daycare so she can have some when the rest of the kids have it.
– I can’t just leave the house without food. We went to a strawberry patch with friends and I suspected we’d be gone over lunch. Before walking out the door, I quickly made her a deli-meat sandwich, grabbed a (soy) yogurt, a spoon and a juice box. We also stopped at a store along the way to pick up some chips to make sure she had something for a snack… Lucky for me she was happy to eat her lunch and didn’t really notice (or care) that everyone else had food from the deli counter at the strawberry patch.
– A friend asked me if I might consider changing daycare for Avery once Alex starts school in the fall… maybe one closer to his school. My answer was a quick “no” and I quickly rattled off why, “First, she’s a wonderful provider and we’ve been there since the kids were babies. Secondly, she’s VERY accommodating and educated on food allergies and I won’t even try to find that someplace else if I don’t have to.”
– We visited a friend’s house and weren’t planning to stay long enough to eat, but Avery spied cut-up fruit on the table and asked to have some. I had to ask my friend a million questions about where the fruit came from, who cut it up, if the knife had been used on anything else, if the utensil had already been used, etc. My heart also skipped a beat when I saw an open container of potato salad with egg in it. Avery is severely allergic to eggs.
– Friday I registered the kids for Vacation Bible School (VBS), this will be Avery’s first year. In addition to the form that asked to list any special issues, including allergies, I alsoe-mailed the children’s ministry director requesting a phone meeting, and then a face to face meeting with the teacher of Avery’s group the first morning to review symptoms to watch for, safe snack management and teach her how to use an Epi Pen.
It can feel overwhelming how food allergies can influence every activity and meal. There is special thought, planning, shopping and cooking to accommodate. And then there’s the emotional piece for the CHILD with the food allergies – helping her adjust, feel normal, provide alternatives that are safe and delicious.
And you want to talk about birthday parties? Oh my. Or how about when she goes to school in a couple of years? I’ve also heard those pesky teenage years are the most difficult with food allergies, as kids don’t want to carry epi-pens and take more risks in the foods they’ll eat (as teenagers are prone to do naturally).
So what helps? In the beginning, I couldn’t get enough of talking with other parents who understand. The Food Allergy Support Group of MN was invaluable to me – they assigned me a buddy – another parent whose child had similar allergies – to help me. In the beginning I called her A LOT. Now we talk every few months to even a couple of times a year. There are also many online food allergy forums where you can post questions and see how other parents manage.
Now? It’s simply a way of life. This is our new normal. I try to stay educated on food allergy studies and trends. I watch the #foodallergy hashtag on twitter and interact with people there. I read Allergic Living magazine.
And I try to help other parents in the same situation as much as possible. Just this weekend I received an e-mail from a blog reader I don’t (yet) know asking to compare notes… and a note from a relative whose infant (they suspect) has a food allergy and was asking for help and resources. Oh, and I post products and recipes here, too, so hopefully that helps others, such as my new recipe for dairy-free mac and cheese.
Like everything in life… it’s my belief that once we’ve “been there, done that,” we have a human obligation to help pave the way for others facing the same challenges. I hope this post has helped someone out there feel a little less alone in their stress of food allergies.
To learn more about our food allergy journey, you can find a list of articles, food product reviews and recipes here.
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