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Life Update

Now that I’m done being whine-y and dramatic about missing my sister I guess I should talk about all the wonderful things that have happened since we moved! I’ll start with Spencer. Spencer is doing really well at the new Carmax. He likes his coworkers and has been getting really positive feedback about what an […]

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My Family Lives in a Different State

Hi blog. It’s been a really, really long time. I have several half written blogs sitting unpublished in my notes folder and drafts section of my blog. They sit unfinished and taunting me with words spiraling through heavy emotions that beg to be let out, but I push them aside as I pound out miles […]

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Victory Lap.

August 2013: It was stupid hot. Like, 97 degrees with 634% humidity. I stood at the bottom of the hill on Cottonmill under the shade of some trees and caught my breath. My phone’s GPS app was paused for the 7th time. I stood there for a good 10 minutes before continuing on out of […]

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Lead Me.

Hey blog. I’ve been neglecting you again. I’m sorry.   The past couple weeks have been challenging for me. In the beginning of July Rae had her follow up with neurogeneticist, a mitochondrial disease specialist. **Note: Neurogeneticist and mito doctor are the same person. I tend to switch between calling her both. The last time […]

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Body.

I’ve suffered through every eating disorder you can imagine, from binge eating to bulimia and from anorexia to diuretics and over exercising. I remember my junior year of high school weighing in for the lightweight crew (rowing) division before our regatta and weighing in at 108 pounds. To some, that’s not ridiculously small, but I’m […]

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She Doesn’t Get It.

You don’t have to ask Rae about her backpack, or the tubing sticking out underneath her shirt, or even about her gtube for her to show you her stomach pridefully. I’d say she flashes her belly, with her little plastic mic-key button 20 times a day to anyone and everyone. But lately, as the pang […]

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Immunology.

Hey, blog. It’s been a while. Sorry I’ve been neglecting you. Writing words is usually my stress reliever, and it still is sometimes. There are about 5 blog posts sitting, waiting to be edited, re-worded to sound less pathetic and less like I’m drowning in a sea of worry. One of these days I’ll finish […]

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raeraera

Hospital Stay #4

So in 3 days at the hospital Rae had a video EEG, lab draws, a brain and spine MRI, 14 hours without food, and countless times being woken and vitals taken. We are home now with mostly good news. Rae’s MRI and her EEG were both clear and showed no brain abnormalities or changes since […]

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Bugs and Bees and Nonstop Crying.

Last Tuesday night, around 4/4:30 I heard Rae scream in incredible pain. I ran down stairs to find her sitting on her tricycle grabbing her legs saying “BEES! BEES!” I immediately got her off the tricycle and started searching for a bug or bee that may have stung her, while she sat sobbing, grabbing at […]

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raheh

Never Ending.

You know those stupid questions you ask the doctor that you’re 99% sure you’re just being a paranoid mom about? You’re mostly just looking for confirmation that you are indeed, still crazy and everything is fine. I had a bunch of those questions this morning for Rae’s 2 year check up. If you’re new to […]

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