“There cannot be a crisis today; my schedule is already full.” ~Henry Kissinger

Sometimes I travel with my daughter and we are on the road for many hours. It is amazing to be going 65 miles per hour and have some kid zoom past our van obviously text messaging at the same time. This has led me to the awful thought …

What would happen if we got in some type of accident and I could not communicate?

My daughter has one of those luggage tag things on her chair and where you normally see an address is the note “Emergency Information.” I just updated this recently, it is basically the medicine schedule that is posted in the house, with additional emergency contacts.

A friend saw this recently and the only reaction was “holy shit.”

I redacted some of the information as there are only four children in this country with the diagnosis (two are mine – the first in medical literature – lucky us).

And yes, I do realize that saying “No G-tube, fed by mouth” will get me a big “duh!”, I wrote it anyway. Shows my trust for some ER doctors, I can just imagine them searching for her g-tube … “it gotta be here somewhere … “


  1. By Claire


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