Challenging AF – Or maybe we just need to speak her love language. 

I took an anthropology course in college. The first assignment was to define your family culture. I realized after examining our daily interactions as a family we are a very lovey family. We say a lot of “I love yous.” We also always kiss and hug hellos and goodbyes. We depend on that physical touch to ground us home.

I am thinking about my tiniest who is struggling a lot right now. She randomly looks up at me several times a day and says “I love you.” It’s not prompted. She just tells us. We love you too, sweet Oo. 

I’m suppose to be super grateful right now. But I’m not. Someone actually said “well it’s not cancer.” Ummm shut the F up. This sweet baby who randomly tells her people she loves them has to change her world. Or really, I do. All of this work is going to be mine. And I kinda want to call bullshit to that. 

My biggest worry is how to raise a strong girl who (to survive) has to have a tricky-rule-following relationship with food. Our society fucks up girls body positivity, food relationships, and general confidence. I have to combat all that regular shit, and still raise her to be completely badass with a tricky relationship with food she needs to have.

I have to teach her to advocate for her body. I have to teach her this in the face of naysayers. I’ve already heard “gluten free is a fad.” I’ve already heard “we don’t accommodate that.” I’ve already heard “it’s not that big of a deal.” I’ve already heard “it’s probably not real.” Well, friends… this is as real as it gets. 

I decided from second one this wouldn’t be a secrect from her. I told her she can’t have a hot dog bun because it is filled with gluten. She can’t have “blue cereal” (Crispix) anymore because it’s full of gluten. Twenty-four hours in, and this sweet loving baby already knows she can’t have chocolate donuts. At three years old that’s a devestating loss. I told her sissy we couldn’t go to Moe’s with Oo. She already knows that her lunchbox is gluten free. She already knows she needs to bring her lunch box with her. 

I learned today she likely sleeps late because iron deficiency causes exhaustion.

We had a lovely family dinner last night. Her dad kept pasta salad to the side. She told me today “daddy had spiral noodles with gluten.” So we will change that, obvs. 

It’s like all of her great love is figuring out how to still love in a world that isn’t going to be kind to her needs. And the biggest work is going to be to keep reminiding her that we love her, and that she is sheer perfection, in spite of Celiac. The biggest work is going to be keeping her great love alive. 

I guess my first plee to the whole damn world is to be kind. Because ahead of me are birthday parties, pasta dinners, play dates, and school that I have to navigate with the most loving tiny human who is deadly allergic to half of our food. Ahead of me is every kid with gold fish, and every person who doesn’t think this is real. 

I would be negligent in this rant to not mention the greatest group of women I know, who prepared a GF play date on day one. Who only listened to my woes. Who only understood when I said I was a “hot mess.” These women accepted that answer. And who before I am able to, simply took this news in stride. And I think all of the great love sweet Oo gives out, gave back. 

Our culture is love. I suspect in this new journey we will need extra love. We will need kindness, and forgiveness, and acceptance as we navigate and build our new normal. 

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2 thoughts on “Challenging AF – Or maybe we just need to speak her love language. 

  1. I just happened across this post when someone liked it on Facebook. I wanted to let you know, though, that you have all my empathy. My younger sister and I were both diagnosed with celiac as adults and I can only imagine what it is like to start this process with a child. I’m really glad to read that you’re helping her become her own advocate. That will serve her during her entire life in so many ways.

    If you ever need help finding good products, don’t hesitate to email me. I feel as though after 10.5 years of gf, I finally have things dialed in.

    Best of wishes for you and your daughter!

    Like

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