Wednesday, February 5, 2014

Life, lately. On allergies. On anxiety. Inside the brain of this food allergy mom.

There are some things you don't know until you have to know them.

Like, a fever of 104 degrees in your child doesn't necessarily mean you have to rush to the ER in the middle of the night. And sign-ups for preschool that starts in August actually take place in February. And you can function for an entire day, quite well, on only a few hours of real sleep. And bird seed and yard mulch and duraflame log starters include peanuts or peanut shells.

Yep. These are the things I know now. And know so well that my head wants to explode. Specifically, regarding the latter set of things.

My baby boy was diagnosed with a life-threatening peanut allergy and in many ways, all that crippling worry I felt while struggling with post-partum anxiety came rushing back. All of a sudden, worrying about germs seemed so trivial. The flu? We'll manage and I'll worry through it. Just please Lord, protect my child from peanut proteins.

And that's just it y'all. The things I didn't know, I now know. And need to know. And they are with me every minute and every hour of every day. Tiny little minuscule, invisible pieces of peanut protein can harm my child. There are stories that I read on the support groups of something you can't see or even identify that are sending children like mine into anaphylactic shock. Trying to understand and appreciate this fact -- while making safe changes to our family's way of living -- without totally turning into a crazy person is really hard. Especially for me.

I have been pretty silent on this blog since the diagnosis. I've had a thousand conversations in my head that I've wanted to share. But it's upsetting to type them. I remind myself that we thankfully are not dealing with an ongoing serious illness, or struggling to put food on the table. In the grand scheme of things, having a food allergy is manageable, and preferred, even, to something just awful like cancer or a debilitating accident. Right? And, when I think about how hard this feels, I think about parents who struggle with more food allergies to things like milk, soy and eggs.

I am just having a hard time, if I'm honest. A really hard time. Rusty told me the other day, "I don't think an hour goes by in your day that you don't think about peanut allergies." And he's probably right.

We struggled through Halloween. We trick or treated with Elias in the wagon and Asher actually going door to door. We left the candy in the garage, swapped it out and washed our hands. And I kept vigil on Elias all night.

Then came Thanksgiving. We asked our family to please not eat any nut items at the table with Elias (he's also allergic to pecans and pistachios that we know of) or bring the popular pecan pie to the pot luck gathering. It reality, pecan pie was probably consumed at the cafeteria table before we got there and could be on the surfaces. And, now that I'm thinking about it, it could quite possibly be on the doorknob to the bathroom. And we all know a not-quite-two-year-old is going to gnaw his fingers constantly. So, while we were able to provide some cushion in our requests, there was still 'that chance' in a cafeteria or large family gathering environment. How to cope with that? My heart beats fast just typing it.

Christmas went smoothly. I managed without medication (yes, I medicate to get through tough times without shame). We hosted a big family dinner here at our house and everyone was so kind and gracious to check labels for me. I felt we were safe under our own roof, but I still watched him closely.

Here we are in a new year. I'm working with my doctor to try to get a grip on my anxiety. I need to feel joy more. I'm trying to rely on prayer and the trust that God is a shield around my Elias. And we are following very closely the findings coming out about the ability to desensitize peanut allergic children. There is some real progress there from amazing doctors who see that this is an epidemic and care enough to find a cure, not just arm us with EpiPens. (Much more on this later.)

I'm hopeful.

Meanwhile, I'm trying to balance my worry with reality. I'm trying to not fault my husband for rolling his eyes every time I tell him about other kids who had reactions. Like the kid who had a serious reaction when they were playing with bird seed in the sensory table at preschool. Or the families that had to ask their neighbors to not feed birds or squirrels the bird seed with peanuts in it because it was found in their yard by their allergic child. But these things happen, and are happening. And we need to know where dangers are.

I'm trying to educate those around me. And be appreciative when they listen and help. I try not to obsess about what we'll do when it's time for Elias to go to preschool or kindergarten. I try to not cry when I think about him having to deal with this allergy for the rest of his life. I try to not let the Snickers bar wrapper on the playground ruin our time together playing. But, it's hard.

I read labels like a fanatic. The FDA doesn't require companies to put 'may contain' or 'trace' warnings on labels. But many do. I try to stick to those brands when I can, knowing that if there was a possibility of a trace of cross contamination it'd be written there. I ask Joni to please check labels behind me when feeding the kids. And she'll call me in if something like a hive pops up on Elias so we can both examine the situation.

See? It's constant the things to think about. My anxiety is greater in unknown situations. And dealing with a food allergy is a big unknown. You don't know how or when a reaction will occur. And, it's hard to turn my brain off.

I want to turn this anxiety energy into positive energy. I want to advocate for my child. I want to hug my husband and kids extra, extra more. I want to thank our families over and over for their support. I want to push for better legislation for restaurants and labeling.

This crippling cloud of nut allergies that's hanging over me - it's over me for now. One day it won't rest on just us as his parents and caregivers. It'll be over him, too. And that just breaks my heart. I don't want him to feel what I'm feeling. And we vow to do whatever we can to help him and protect him, and hopefully eventually desensitize him.

I'm hopeful.

For now, though. I felt it heavy on my heart to share my personal story with where I'm at with all this. And now that I've 'broken the ice', so to speak, I hope that getting back to writing and sharing will help bring a little bit of healing. For my brain and my heart, and as a result, some healing for my family.


Jen Seiderer said...

Kira, you have perfectly captured my everyday reality as well. Unfortunately, there are many of us who can relate. All we can do is love our kids and try to keep them safe while not going crazy ourselves. You are a good mama and we're here behind you.

RunnerGirl said...

Incredibly written, friend. You are an amazing mommy and Elias is so lucky to call you "mom". Even though we've outgrown, please know I'm still here and you are not alone. I will help you chase snickers wrappers at the castle any day!

Liz said...

I wish I didn't understand, but I do. Know that you are not alone in your thoughts... and this struggle. It may not be helpful, but I have to constantly remind myself... "he" does not give us more than we can handle.

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