This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

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 giving Tuesday, please make a phone call to your senators on behalf of medically complex kids …

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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 someone dies, there is apparently this big conference. At my hospital they called it M&M, which is a creepily …

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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 moment, perhaps, but every human has license to be ridiculous now and again. What set …

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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 October, and again, potentially, in November. We’ve reached 60 days of hacking and counting after three rounds of antibiotics. …

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