It’s Celiac Awareness Month and Awareness is a Journey #beyondceliac

It’s insane to think we are almost 2 years from Oo’s diagnosis of Celiac Disease (CD). (June 22, 2017 marks 2 years.) It’s also pretty magical to watch her grow and thrive when there was several scary months that growing and thriving wasn’t happening in her short life.

Awareness for Awareness

1. CD is not just or only a gluten free diet. It comes with all of the symptoms of most auto immune (AI) diseases.

2. Auto immune diseases are the leading cause of disabilities in women and girls.

3. Oo’s immune system is pretty strong, but when she gets a simple cold it wrecks her skin and joints for days.

4. I suspect a lot of her sensory struggles are from crappy skin, which is an AI symptom.

5. Oo continues to gain progress with sensory challenges.

6. She still hates food, and eating is still her least favorite thing… we let it go.

7. When she is “gluttened” or has accidentally ingested gluten, even the smallest amount she gets sick. The worst kind of sick that makes her so sad and more afraid of food.

8. Her medical care is different than a non-Celiac child and that sucks a lot.

9. She might always have a year of lost growth. (At 5.5 she’s the size of an average 4.1 yr old). I didn’t realize I would have to advocate so hard because of that. Being small is tricky when you are 5.

10. I use to worry about her taking care of herself when it was time for her to make her own healthy choices, but I worry about that less now. At age 5 she is already pretty awesome at self-advocacy. (This past weekend our neighbor offered ice cream, and she ran home so I could read the ingredients before she ate it, and was pretty prepared for being told she couldn’t. Thankfully it was GF!)

I’m standing firmly in the glory years of childhood with Oo. She’s FIVE AND A HALF! She loves us, and loves to play, and loves her friends, and can’t wait for summer. Her CD only complicates HER life when we let it. So we skip some parties, and call ahead to restaurants…. we limit the complexities because she thinks 5.5 is big, but it’s still pretty little. We bribe for blood draws.. because she is only 5.5.

With awareness comes an obligation, and the best way to meet that obligation is simply to not make assumptions about what a person or a Celiac child may be dealing with. It could be a rough day. It could mean that their AI made them tired, and their knees hurt. It could be a great day. It also means that everyday is a picnic!

Oonagh has a illness that affects an everyday life function: eating. And we are leaning new things everyday. But my goodness is she an amazing human to raise, and she has taught us all more about empathy, sacrifice, accommodation, and privilege than I ever expected to learn in this lifetime.

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