It’s a Journey #beyondceliac

I haven’t updated our journey living with a tiny human with an auto immune disease in a while… It’s sometimes tricky to discuss, and other times I just can’t utter the words “gluten free” one more time without wanting to actually lose it.

Winter is hard. We learned that a common cold will knock down a tiny human with an auto immune disease faster than you can imagine, and lasts weeks longer, which can be pretty defeating. Her last cold sparked a hepaformis dermatitis outbreak… it caused significant hair loss…. sigh… At least we know what it is. We also learned that my affectionate way of saying bshe was a “young three” was because she didn’t develop much for almost a year.

Our grocery bill is pure insanity. (It’s almost embarrassing.) I realize it doesn’t have to be quite as insane as it is, but that’s not our reality. We still have tiny humans that hate food. I’m super fussy about organic animal products (different families make different choices). We have a new vegetarian, and melding all the needs is challenging. We gave up cereal. (It’s an occasional snack.) Gluten Free cereal is full of sugar and is super expensive. So, now I make banana muffins every weekend that are stuffed with protein and fiber. I could in theory do this for a lot of things, but I work full time, and I am finishing grad school, and there is only so much I can navigate in a week. So $6/loaf bread it is.. with $5/jar almond butter. We go to three to five stores a week. (Yes, it’s a privilege.) We shop several times a week. When we find something healthy, gluten free, vegetarian, and organic that the tiny humans will eat we legit jump for joy! So we obviously buy fancy oat bites for $5/8 bites… obvs… And fancy vegan, gluten free, veggie burgers are a new hit in lunch boxes…

I’m notating that being the older sibling of a special needs younger sibling is showing it’s challenges. I’ll write more about that later. It’s tough, because O has more ability and intelligence in her pinky finger than most adults I know. So expectations are high… maybe at times to high.

We had a tough day. I’ve been sick for days.. and I had so much school work to do. Oo was not her best self, and I wasn’t my best self in response. (Starting the day at 7:45 am in urgent care doesn’t actually lend itself to many kind words.)

She reminded me today that she can’t wait to be ACTUAL FOUR AND A HALF (May). I remembered how little she is… and I feel terrible for some moments of today. Especially when I look back on the last seven months and realize how far we have all come.

Seven months ago I almost quit my job. Seven months ago everything was hard. Seven months ago she couldn’t get dressed, and we didn’t go anywhere without an iPad because her behavior was that I manageable. Only seven months ago…

And now she’s growing. She’s thriving at school. She’s developing at a rapid rate, and her vocabulary is amazing. (Brings me joy.) Our entire house is gluten free. We provide 84 gluten free, mostly organic, many vegetarian meals a week! We are doing this. We really are. We have all worked hard these past seven months.

And this…

She will always be the tiniest. She didn’t grow for a whole year. #itsathing #buckethat

This girl got on stage with her peers and preformed in the winter production. (Seven months ago I would have thought this impossible.) In her own time, and in her own way she is reminding us all that we are living #beyondceliac

It’s a journey… We have more blood draws next month, but at least now we have amazing health care, and I won’t actually have to spend hundreds of dollars on pain.



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