March 27 2015

Debbie Anthony

I am both grandmother and primary caregiver for two beautiful children with cystic fibrosis. Raising my grandchildren – Elijah (7) and Renae (5) – has been a major adjustment for me, especially after raising my own four healthy children.

Every morning, Elijah and Renae wake up, take their medication, eat breakfast, and head to school. They both go to the school nurse during the day to take their enzymes and to do their breathing treatments. Once they arrive home, they take enzymes with their snacks and do treatments again before bed. Elijah also has a nurse come over to help set up his feeding tube before he goes to sleep.

Both my grandchildren play sports – Elijah likes baseball and Renae is in gymnastics – and both of them like to swim. I see an obvious difference in their health when they are active. It amazes me daily how they go about their days as though nothing is wrong and live every day with joy.

My favorite color is blue.
My favorite food is Chinese.
My favorite holiday is Christmas.
I love to watch the Hallmark and Discovery Channels.

If I could give other caregivers advice, it would be to remain patient and advocate for your child with CF. Learn as much as you can and talk to other families affected by the disease.