The tapestry of the life of a medically complex family


Today while making the kids breakfast I noticed them in my fingers. When there’s lots of stress and less sleep- there’s more coffee, less food. My body responds by less steady hands. As I await the night nurse so I can get some sleep, I still haven’t figured out how I am going to get some medical info to the doc before our appointment on Friday. Tomorrow’s nurse called off her shift already so I won’t have any help at all… To say I’m thankful it’s just my fingers that tremor is an understatement. These tremors don’t scare me because I know the stress will stabilize, I can drink less coffee [but I won’t…] and I took the time to eat lunch today so tomorrow should be better.

The tremors that do scare me were here last night. As Trachboy was drifting off to sleep, his body did it’s gentle, repeated twitching that I haven’t seen in a while. He was really tired but it has been a really long time since I remember these movements of his trunk and the flitting around of his eyes. In the point of near sleep, not focusing, flicking back and forth while his body moves along. His first few years, these movements were part of his nightly ritual but I don’t remember the eyes taking part. Eerie.   Hoping this is not something we will see again but it is now on the list of questions for the doctor on Friday.


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