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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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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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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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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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‘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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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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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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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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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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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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Wash your hands of this election…and then…literally…wash your hands (more)
It’s been a bitter and divisive year. The cards have fallen. The votes are in. You may be celebrating or mourning today, and that’s beside the point. Let’s all wash our hands of this brutal election...
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The question
Eli asks a lot of questions, but tonight he asked a pretty big one. “Why do I have to do my vest and take medicines,” he asked while I coaxed him into his forest-green plaid jammies. (I love those...
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I confronted my chronically ill son’s drug maker. Here’s how that went:
Here’s the short version of this story: We went to Boston and received from Vertex the equivalent of a corporate pat on the head. If you choose to read on, I’ll provide some details. Details Eli and...
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Dragon mom gets a new nebulizer/ Eli gets a cold
The notorious e-Rapid Nine months ago we got a new nebulizer that was supposed to cut Eli’s breathing treatment time down. Right now he inhales a medicine called Pulmozyme once a day to bust up some...
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Cowboys, tornadoes and whey
We know a cowboy who can smell tornadoes and loves clean eating. That’s the crazy thing about Oklahoma. People are full of surprises. They are open books down here, even more so than in the Midwest....
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Saying goodbye to a reader
I never met Sage in person. It feels like I did . Gah, did I? Hadn’t we seen each other in real life? Traded a hug somewhere? At an event? Had we ever crossed paths on clinic day? No, and yet I feel...
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How to investigate a drug company
Yes, as through this world I’ve wandered I’ve seen lots of funny men; Some will rob you with a six-gun, And some with a fountain pen. -Woodie Guthrie If you, like me, are interested in getting a...
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8 days left to purchase a T-shirt and fight greed
Hello, everyone! Good news! You can still purchase a compassion > T-shirt and fund the delivery of a petition that seeks to address runaway drug pricing for cystic fibrosis medicines! There are...
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3 tips to organize your medical life (that I learned the hard way)
I met an Iraq and Afghanistan vet named Titus. Caught up in a Baghdad mortar attack at the start of the Iraq war, Titus came home to Oklahoma with problems he did’t have when he left to serve in the...
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Little pitchers, big questions
I drove Laila to school this morning. She’s 5. “Wanna listen to my phone music, Daddy’s music or NPR?” “NPR!” “OK.” I turned it on. A Russian political dissident is dead, poisoned as he took tea at a...
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