The tapestry of the life of a medically complex family

Archive for January, 2012


We have a stuffed elephant about whom we are writing a family book. At some point, I’ll tell you more about it but for now I have to share my youngest’s page from today- before I fall off the couch in my next fit of laughter. The text reads:
Elephant walked to the other counter and cleaned up after the mouse.


Note the green sponge in elephant’s hand & giant mouse excrement…


The Deli Drawer

If you’ve read much of my blog, you know my kids & I follow a special diet. We eat organic & homemade, without grains, starches or complex sugars. The Specific Carbohydrate Diet has no processed food of any kind on it- no “deli” items come to mind that need be in our fridge- & good thing.

Currently our deli drawer is housing about $25,000.00 worth of medication. The twins new regimen for inhaled (nebulized) medications includes Tobramycin. TOBI is a string antibiotic that kills the types of bacteria kids with trachs tend to grow out regularly, and occasionally in large enough populations to cause actual illness. Our pulmonologist wants to be pro-active & avoid these infections for the twins while we work to avoid other viral illnesses that might land us in the hospital again this winter. Yay for proactive healthcare & yay insurance.

What’s in your deli drawer?


Kairos 1-20-12

A glimpse at our new adventure:

This slideshow requires JavaScript.

Hard at Work

The Fearsome 3some compares notes while working on their journals.


Learning to “Dance”

A friend writes beautiful, thoughtful blog posts as she navigates the world each day this side of nearly unspeakable loss. The other day’s post was written about 13 qualities of a spiritual life. I think my definition of “spiritual” is more about general connectedness to what is beyond ourselves, but her list of qualities got me thinking & responding.

The one that struck me most is:

INTIMACY: If you had an hour to live and could only make one phone call, who would you call, what would you say, and why are you waiting?   Stephen Levine

My only response to this: no one. I would call no one. I would wake all my kids, take out all their favorite foods, sweets for Trachgirl- & not make Trachboy eat. I would wake them & turn on music & dance with them, sing with them, and read to them – & jump on the furniture with them (an especially big dream for my Youngest). I would want to expire in their tired arms’ embraces, listening to their laughter, seeing their smiles. Them, all 4 together. That’s all.

Who would YOU connect with?

Want to Write

I want to write… but oximeter alarms sound so frequently I am waiting for the nurse so I can go to the bathroom. I want to write… but New Year’s Day brought the stomach flu to ME while I was alone with the recovering kids all day. I want to write… but when the nurse arrives, I need to SLEEP. So goes the complex medical life…