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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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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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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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Missing the Glory.

Last night I did everything right. I prepped snack time for Little S’s preschool. I got the kids clothes out to be ready as soon as they got up. I had my gym clothes out ready to go and packed my bag with my clothes to change into after the gym. The packages I needed […]

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Small and Mighty.

On February 12 of last year, I stood in the Neurology imaging department of Children’s National Hospital. I clutched tight to Rae’s Minnie doll looking out the large windows and saw large colorful hot air balloons suspended from the ceiling. The people roaming the halls were cheery in a way that kind of made me […]

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Cry Out.

“MOMMY. NO!” Once. MOMMYYYYYY. NO.” Twice. “MOMMY!” Three times. “MOMMY! I. WANT. GO. HOME! GO NOW!” A fourth, a fifth, and a sixth time. Rae continued to cry out most of the morning. She was begging and pleading with me to let her leave the brightly colored halls of Children’s National Medical Center. She cried […]

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