Sometimes a Positive Still Sucks 

Whelp, the news we needed and equally dreaded came back today. 

Oonagh’s small intestinal biopsy is POSITIVE for Celiac Diesease. 

We knew this. In our hearts we knew this. Yes, I’m really grateful for answers. I’m relieved my gut never let go of knowing something was wrong, and not giving up until I had the answers… I’m relieved that we have amazing providers who went head to head with us against the insurance companies… I’m relieved she will be okay. I’m relieved that every concern I had for her can be explained with this diagnosis.

But no one wishes a life long disease for anyone they love. No one is grateful for this. And while I’m thankful to have an answer, this answer sucks. 

Auntie and Oo

The gluten free lifestyle that needs to happen is not what makes my heart sad, whatever, we will do that. It’s like a syllabus of assignments to follow, I’m good at that. It’s everything else…

My heartache is for the impeding lab work in 3 months (it took 4 techs to hold her down last time). Her first mom-free play date with her own food. Every birthday party with her own cupcake. Every movie theater experience. Every stupid comment that suggests “a little gluten is fine.” Every first date she will need to disclose her GI health. Every party she will be BYO… 

My heartache is for how this world completely destroys girl’s and women’s confidence, especially surrounding their food choices, their bodies, and their self worth. 

My heartache is for everything that will look different. There will be no more munchkins.. and there will be no first tasty beer at a great brew pub on her 21st… (something my dad did with me). 

My heartache is for all of the stupid comments people will make, someday I won’t be there to deflect them. My heartache is for the work of tremendous self advocacy I have to teach. 

Today my heartache was for bagels… I know it sounds silly. Many of us choose not to eat bagels, but Oo didn’t get to make that choice. So I spent a gazillion dollars in fancy gluten free flour and made her some. 

Gluten free bagels for my bagel loving Celiac girl.

On the plus side, because of the diagnosis the insurance company doesn’t stand a chance. 

#beyondceliac #celiacawareness #noitsnotanallergy #glutenfree

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