*Warning: This post is long winded & bordering on complaining. I’ll completely understand if you click away without reading it.*
Tuesday was 1 month from the day I received the phone call that Audrey had officially been diagnosed with Celiac Disease. Some days it feels like it was an eternity ago, while others it feels like I just hung up, in tears & in shock.
We have purged our home, organized and labeled, read books, researched and experimented with many gluten free recipes. We’ve bought new frying pans, cutting boards, colanders & serving spoons. My hands have been raw from soapy water, washing cupboards, counters & appliances. Crumbs are now no longer just an annoyance but an enemy & simple dinners sometimes have required ALL of my pots.
Yesterday we visited Children’s Hospital once again for an appointment with the GI Dietician. I can honestly say it’s the first appointment in 5 years that we’ve had there I was looking forward to. A little over an hour later Audrey and I emerged, more informed (Audrey’s eyes glassy from boredom) and with some of our questions answered.
While the initial shock of her diagnosis has worn off for me, I still walk around most times feeling sort of…stunned. As I browse through many aisles, scrutinizing every label harder than ever, my brain feels foggy. The information swirls, my eyes blur and I’m sure there have been moments that store clerks think by the look on my face that I’ve maybe had a few “special brownies” with my morning tea.
This lifestyle is extremely involved and while those who’ve lived with it for a while assure me it does get easier, right now it feels very intense. We love the improvements we’re seeing in Audrey, they are great and in a few weeks I’ll share them with you! But we’re also still seeing concerning things from her. Try as I may to ignore them, the possibilities of what they could be still whisper warnings in the back of my mind. I’m also petrified of “glutening/poisoning” her and there are moments, places where the world feels like a really scary place.
We are also learning to navigate the fact that the majority of the world is severely under-educated and/or ignorant when it comes to Celiac Disease. Due to the “gluten free to get skinny” fad there is copious amounts of misinformation floating around out there. Well meaning people offer up advice that is plain wrong, make comments that are simply ignorant, and strangers feel the need to tell me that I’m wasting my money on gluten free products because they’re “not any healthier, you know”. I’ve been told how to feed her, and how not to feed her, how to cook, how to clean and a laundry list of things I “shouldn’t try to bake, it’s too hard for you”. Just like when you’re pregnant apparently when you’re shopping/living gluten free your personal life is free game.
There are moments when all those things paired with the fact that I haven’t really slept since November leaves me feeling bewildered. I do my best to lock it down, to keep it in, not to let my girls see it (especially Audrey, this isn’t her fault), not to let my household suffer because of it and to be “good, great, fine thank you” when everyone asks. It really could be worse, I know that but sometimes, it doesn’t feel like it.
Sometimes I just simply get angry.
I’m angry that this is what we have to face. I’m even angrier that this is what Audrey has to live with. I’m angry at the cost of feeding her (it should NOT be so expensive to feed our daughter). I’m angry that all this effort and work hasn’t fixed everything. I’m angry that people are stupid and don’t have filters. I’m angry at the hypochondriacs, the diet bandwagon jumpers and the bloggers who know nothing but speak as though they have authority. I’m angry at my own ignorance, failures and fears.
Surprisingly enough in all the anger that can be sometimes, I’m not angry at God. Somehow, in all of this I feel like it’s by His Grace that we are here, that her diagnosis wasn’t something worse, that I make it through each of these days.
Don’t get me wrong, I’m not walking around every day on the verge of explosion (unless I have my period, then, well then I might explode so maybe you know….don’t look at me. Or breath. Just hand me a Starbucks and back away slowly), not every day is bad, some of them are even really good. I am thankful for the part of the gluten free movement that has given me information & store shelves with more options. I know “this too shall pass”, I know one day this will feel like our normal and life will get it’s rhythm back. That day just isn’t today.
This life is filled with ups & downs, with trials & joys, with all the things that make us stronger. We spend so much time walking through it trying to pick and choose the things we feel. We tell ourselves that we need to always be OK, always be happy, always be positive because anything less would be weak.
I’m learning that it isn’t weak at all. In fact, I’m learning it’s quite the opposite. Letting ourselves feel all the other emotions, the fear, the frustration, the anger, the overwhelmed despite what the world may think is where true strength is found & where we grow the most.