What I wasn't quite ready to write about was how seeing our daughter's allergist changed MY life.
As a young child, Annabeth has always reacted (with hives) to peanuts and over time her reactions to dogs/cats have worsened (to more severe hives and difficulty breathing). But this summers reactions that sent us to the Emergency Room two times totally changed the way that I viewed her food allergies. They went from something we worked to avoid to something I was losing sleep over.
We had a 7 week wait to see an allergist and so in the meantime we avoided what we thought the trigger foods were and asked family and friends to do the same. Everyone else was so calm, "Okay. We'll be nut free when we see you." And that was that.
When I talked to Mark and my family everyone said, "Okay. We'll check the labels again" or "It's okay, we'll figure it out." But I was FREAKING OUT! I think maybe my parents and Mark could sense that and thought I needed them to be calm for me. But I didn't!
Both of Annaebth's reactions happened when I was alone with the kids. I was the one ripping her clothes off, washing her skin, giving medicine, trying to get shoes on everyone and to herd them out the door, watching her choke-vomit-wheeze, and I was the one who had to make the drive to the hospital - keeping her talking to me so I knew she was okay. It was me, alone. And it was terrifying.
We saw the allergist and he was the first person who said the things I needed to hear:
- This is serious.
- This is life changing.
- You will have to change how you grocery shop, go in public, visit other people's houses.
- He gave me a new protocol for how we should eat out or visit places like the Children's Museum
- Avoidance and also carrying two epi-pens are her two best chances at surviving another exposure to her worst allergens
We spent hours in his office as he walked me through all of the things we needed to change. He validated all of the precautions I had been taking and also all of my fears. He was the first person who really listened as I talked. He was the first one to completely agree with all of the changes we had made. He was the first person who seemed to understand how I felt and for that I am so grateful.
The first grocery trip after seeing the allergist, took over an hour and ended with me sobbing in my car. Our allergist said it is now necessary to watch for "may contain..." items in addition to items that do contain the allergens. It completed changed the way I grocery shopped - especially because Owen is gluten free and many gluten free items are made with almond flour which we are not to have in the house anymore. It took twenty minutes just to find a pancake mix that everyone could have.
I have stayed home a lot this summer out of fear. Because we still are not sure of what caused the reaction at the Children's Museum (a reaction that within 20 minutes had her covered in hives and struggling to breathe) every time we go somewhere I worry. I wash things, I wash her hands, we don't eat in public and yet the fear is there. Is it going to happen today? What will cause it?
If you don't have, or your child doesn't have, life threatening allergies you may think this is crazy.
It's not - it's life saving.
I share this because I need the people in my life to know how I feel. I need people to understand that the responsibility I have for her safety is huge and it is mostly mine. I am the one who reads the labels, who gives the medicine, who has to change her clothes/shower her/do her breathing treatment just so we can visit someone who has a pet. It's exhausting and it's not going to change. This is her life, her reality and having the allergist say to me: "You're job just got really hard" was the best, most validating thing that anyone could have said to me. It changed my life to have someone take me seriously.
If you are interested in more information I think this page is quite thorough and helpful.
foodallergy.com
2 comments:
You are doing an AMAZING job Amy! It is so tough to be a parent to a child with food allergies, but you are doing great. The stress and worry never will end or go away, but you will gain confidence and then sharing your knowledge with others is fantastic.
Thank you for YOUR shared post this morning about the difference between food allergies and intolerences. One of the things we have found is that SO many people claim to have food allergies (that are really intolerences) that people do not always take us as seriously as we want them to. We especially find this at restaurants with waitstaff who roll their eyes or say they will ask and don't actually ask.
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