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Eli’s cold doubles down, and so do we
Any cold Eli catches can flare up the gunky stuff his lungs hold. It is called a “CF exacerbation,” which is, basically, a bacteria party in Eli’s lungs. That is what happened in September, and then...
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5 #GivingTuesday ideas
Today’s the day. Everyone is asking for a handout! That includes me! Donate here. It’s Giving Tuesday! Here are 5 ways to give: Sickboy I discovered a podcast. More specifically, my pal Marquina...
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That moment when you’re trying to be pathetic and your son body slams you...
I tried really hard to be pathetic. I poured a glass of wine that was more like 1/3 of the bottle. I got under the thickest, warmest blanket we own in bed and called my sister to cry. Not my proudest...
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Winter visits
Our relatives from the frozen North like to visit us and defrost during the winter months. Here’s a photo highlight! I gave all the girls 40s hair, because, well , – why not? Laila tolerated my...
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Shake-up: An exercise in empathy
Little buddy balanced a steamroller Hot Wheel over the mouth of a glass. He had a bulldozer atop an upturned rubber tub atop the same table. He had a grater in tenuous balance on yet another glass....
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‘Mommy, my chest hurts.”
Summer has been some kind of dream. Eli has had no lung infections to contend with and gained weight and grown taller. It has been one adventure after another – but the good kind. Not white-knuckle...
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Post-mortem: The bodies, the battles, the stories, the summer, the week, the...
I first learned about the the post-mortem, in the way the term applies to being better next time around, not doing an autopsy, while working a temp job at an academic hospital in downtown Chicago. When...
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Eli, hug magnet
Eli loves school. Processed with VSCO with a6 preset He brings his teacher random presents: zinnia heads (always missing the stem) from the garden. Paper-duct tape-popsicle stick sculptures. He brings...
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4 ways illness makes you thankful
I am in an airport and I’ve fully turned into my mother. I am wearing pennyloafers. Mine happen to be silver. But still. Penny loafers. Is it 1994? I ate fries for breakfast. And a burger. I’m calling...
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Kids like Eli lose in the GOP tax and budget bills: MAKE A PHONE CALL TODAY...
Hello. This giving Tuesday, I am asking for your help on one thing on behalf of my son Eli, who has a fatal disease called cystic fibrosis. It’s not cash. It’s time for a pair of phone calls. For...
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