I Don’t Know How to Create Her Best Life, and Maybe I’m a Little Scared too. 

These crazy Post Bedtime feels are now frequently finding me in this space. It’s my space, so I suppose that’s okay.

We had the best most amazing day. I do birthday’s big. I’ll never apologize for that. I’m celebrating the lives of the humans I care the most about. I’m celebrating our growth together. I get maybe 14 of these days where I am still invited. (In future years I know I will beg her to come home for her birthday.) Right now, these days belong to us. I do birthday’s big. If I’m not celebrating their growth, their awesomeness, and our love, what is left to celebrate? (I hate questions as a rhetorical strategy, but I’m a hot mess so give me a minute, okay?)
 

We ate in the most fun restaurant today, and everything was about chocolate and waffles. Fancy everything was ordered. I was completely overwhelmed with tiny human joy, and thought this is creating magic, this is living our best lives. This is super amazing, and so much fun.

Chocolate fondue and your best girlfriends. #livingourbestlife

And then…

I thought I won’t ever bring Oo here. They all ordered chicken fingers with waffle fries, which was our running joke that we would drive to Boston for chicken fingers; Oo can’t safely enjoy this space. And if it wasn’t for tiny human delight I would have sat too long in those feels. 

After Annie (the musical at the Wang Theater) we headed to Quincy Market. So much fun and deliciousness. I wandered Fanuiel Hall and realized Oo would never be able to enjoy this splendor. Her sissy selected a hot dog, and asked “can I have a bun because Oo isn’t here?” Because she knows our lives are changing. 

When I arrived home the full lab paperwork was in my mail. I now have numbers, and I’m good at data. Listen, this data is crap. There are four indicators in the blood for Celiac, and Oo’s numbers are stupid high for all four. Even the check for a false -positive is present. What’s the most sad, according to Dr. Google is that the antibody that is produced during intestinal damage is really high. My sweet love is really sick. 

I lived our best lives today. Oo was taken care of by my dad, and they spent two hours at Whole Foods selecting safe food, and he only empowered her safe choices. My sick baby was in the best of care, because I needed to go celebrate her sissy. The juxtaposition is a confusing and disjointed running monologue in my head of competing forces.

I know there are teams of people who do this. My friend Caite dropped off a fresh GF pizza from her restaurant last night. There’s a promise to GF donuts. My inbox is full of support. I know we will do this… we will actually kick ass at this. That’s how we do. 

I’m just not at the ass kicking phase. I’m terrified of her next appointment, and I know we are looking at anthesisia for biopsies. And while I sing “Happy Birthday”, I’m hiring a babysitter because I don’t know how to navigate a pasta dinner, yet. 

So, I do birthday’s big. I celebrate their lives, because I love them more than I even know how to define. Today, I realized her birthday’s will look different, and I haven’t figured out how to kick ass at that yet. 

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2 thoughts on “I Don’t Know How to Create Her Best Life, and Maybe I’m a Little Scared too. 

  1. Ronzoni makes a great gf pasta (even I love it), my family and I are close to gf most days because kids that share our home and daycare are gf and its super important they have the same safe space as everyone else here. We all eat gf mac and cheese and chicken nuggets. The cost is similar and we spend a lot more time at trader joes than we use too, but lentil curls and pirates booty ( the tj brand) are always big hits. Its just gluten. When you go to a restaurant, call ahead and make sure you ask if gf and not gluten sensitive are options. We learned to adapt. We have ice cream cakes instead of regular cakes (without the cake parts in the middle) Now being in Boston I can let you know some amazing places that are gf for the next time you come and want Oo to join in the fun!

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