As soon as the band began rocking out, that grin flashed across her face like lightning. Some folks are born to wave the flag, Ooh, they’re red, white and blue. And when the band plays “Hail to the chief”, Ooh, they point the cannon at you. It ain’t me, it ain’t me, I ain’t no…

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Thirteen years ago today: Five years ago:   Happy thirteenth birthday, Elli.  It’s weird to think I could be the mother of a teen today. On the one hand, I’m grateful that Elli didn’t have to endure puberty in a body that didn’t cooperate with her. I’m relieved that we didn’t have to put her…

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Yesterday, I received the gift I hadn’t allowed myself to admit was at the top of my list. Our youngest had a checkup with his specialist. We’ve had to take him at least every 6 months for his entire life, sometimes more frequently, to keep on top of his condition and make sure we treated…

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Christmas has never been picture-perfect, or at least not since our first child was born almost thirteen (ouch) years ago. That first Christmas we just enjoyed having her home after three months’ worth of hospital stays, two open-heart surgeries, and three separate life-or-death crises. She was home, but with feeding tube, high-calorie formula, many prescriptions, and weekly…

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It’s the end of October, the days are getting shorter, and for the first time in at least 5 years, I am enjoying fall again. It used to be my favorite season. Then, in 2007, our newborn baby had major surgery the day before Halloween. I looked at the fall calendar, saw that surgery date,…

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