It’s Time to Live

Spring 2021 Edition

“I have mastered survival mode; now it’s time to live.”

That’s the powerful motto of CHC client Justine. Justine lives with mitochondrial myopathy and Ehlers-Danlos syndrome. Her hardworking stepdad is an over-the-road truck driver who has to be away for weeks at a time, so mom Kathy often needed to handle her care solo. After a successful tracheostomy and with the support of her parents and new CHC nursing team, Justine is exploring an exciting world of new possibilities!

“A Safe Space of Mind”

Justine’s nurses are not only caregivers, but family. They craft, cook and do homework together. The nursing team handles critical care, trach care and meds, but some of the greatest support they offer comes from the gift of peaceful sleep.

Previously, Justine was waking up three to four times in the night because she had stopped breathing. The sensation was terrifying. Kathy, her primary caregiver, got precious little sleep as well.

Having the nurses there at night gives Justine “a safe space of mind.” She can now sleep through the night, secure in the knowledge that help is only steps away. Justine attends college and it is a point of well-deserved pride for her to be able to take 8 a.m. classes.

A Creative & Entrepreneurial Spirit

Kathy taught Justine to knit and crochet, and Justine has been planning to turn her skill with crafts into her own Etsy shop! Her specialties are beautiful coasters and scarves, but her shop would feature a variety of creations. She likes to tie-dye and is experimenting with stenciling and other painting techniques.

One of Justine’s creations truly stands out. Her grandpa developed Alzheimer’s and needed something to protect his clothing while eating. Justine didn’t like the idea of him having to wear a bib when he was eating at a restaurant with friends and family. She wanted something that would help him maintain his confidence and dignity. She took one of his old button-down shirts and fashioned a bib from it. The resulting “dignity bib” was easy to wear and looked so much nicer when he went out to eat.

“Always Try to Be Positive”

Justine has some words of wisdom for younger CHC patients: “Don’t listen to the negative; always try to be positive.”

Justine does this through her creative endeavors and also through creating connections with others. She enjoys TikTok and YouTube, and even discovered a new formula through YouTube that is healthier and doesn’t raise her blood pressure.

We at CHC are so happy to see all the wonderful things happening in Justine’s life. It is time to live, indeed!

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