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Do You Hear the People Sing?
It’s Friday evening. I’m always hesitant to post on Friday. It reveals the fact that I’m not out at a hip bar drinking appletini’s but instead sitting in my study contemplating the meaning of life. Alas, I am a tad nerdy. But also tonight mind and body demand a little downtime. A little time to…
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Letter to my team about your money
Hello Very Best Donors! This is the time of year when I un-apologetically ask you for donations to my bike ride. I thank you for listening, donating, supporting, cheering. Y’all are awesome. This is our tenth year riding. I am amazed by what this team has accomplished. They have changed how we diagnose and treat…
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June 30
Sigh. Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not. I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes,…
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June 30
Sigh. Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not. I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes,…
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Where Everybody Knows Your Name
via Where Everybody Knows Your Name
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Where Everybody Knows Your Name
United flight 403 is taking me back to Colorado. Back to real life; back to a place where distinctions of phenotype and genotype are not topics of debate, back to where no one really talks about the phenomenon of allelic hetrogeneity. I am ready to be home. I am also grateful for these four hours, 30,000…
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If we were Vampires
Hubs and I spent the last week in Vermont and upstate New York with dear friends. A friends daughter was getting married and we were lucky enough to attend. Situated in the Green Mountains lies the estate of Abraham Lincoln’s only child to live into adulthood; Robert Lincoln. The grounds are lovely; the peonies were…
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Does trauma gives you a hall pass? Someone should tell the hall monitor
I posted something cryptic on Facebook Saturday. It caught a lot of attention from my tribe but it really wasn’t a big deal…. Nothing like seizures, mitochondrial strokes or premature death. I joke because I can. Because I have survived these things. I watched the EEG of my daughter explode. I have held hands in…
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YOPP!
“We’ve GOT to make noises in greater amounts! So open your mouth lads! For every voice counts!” Ah, thank you Dr. Seuss. Rare diseases are tough. And made even more challenging when one constantly has to explain the severity of mitochondrial disease. Energy…..tired….. But so tired that its hard to move your jaw up and…
Samsmom: Life, Joy, Loss and Loving your Mitochondria 