The tapestry of the life of a medically complex family


My son is a twin. He’a a twin with a trach who has a twin with a trach. He also has a younger sister 17mos. younger than he, who is always with us too. Being a single Mom of many, one-on-one time is a precious & elusive commodity.

This morning he woke early & needed to run to the bathroom (14 ounces of fluid pumped in overnight…). I detached his feed and brought him out through the kitchen. Because it was after 6a, I pressed the start button on the Grind’N’Brew and gave up on the idea of getting more sleep today.

After feeding the dog & pouring my first cup, Trachboy & I snuggled at the kitchen table & talked about that today was February 1. We talked about January, what his favorite activities had been, and followed tangents from there.

Sitting, talking 1-on-1 with Trachboy, is his best environment. When more people are there, he clams up, he defers to others, he finds something else to do. 1-on-1 you see his sweet, loving nature and glimpse at things he thinks about, things he loves, what he wonders. This morning’s cup of coffee was my best event of the week. I am so thankful for 1-on-1 time with my special boy.


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