The Informed Caregiver

This post was originally published by Complex Child magazine on February 10, 2015.

Congenital fiber-type disproportion myopathy: what a mouthful! Our three-year-old son Richie received this diagnosis, and it changed our world.

His medical needs have been substantial since the beginning. His weak muscles and difficulty breathing made him seem so fragile. He was intubated hours after his birth and had tracheostomy and G-tube surgery shortly thereafter. The vision I had of motherhood changed quickly, and my husband and I had to adapt to a new reality that included private-duty nursing, therapies, Early Intervention and multiple specialists.

Read more on Complex Child‘s website.

Published by

madvocator

Charisse Montgomery is the author of the Super Safe Kids series of books and safety tools. These tools engage children, parents, and their families in improving safety and advocacy in the hospital, the community and the home. A former educator, Charisse Montgomery has earned bachelor's and master's degrees in English, along with a master's degree in Educational Psychology, with research focused on informing and empowering parents of medically fragile children. She completed a graduate certificate in Patient Advocacy and serves on the Board at Rainbow Babies & Children's Hospital.

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