Episode 30: Kara’s Life with Bennett (age 9)
Description
Episode 30: Kara’s Life with Bennett (age 9)
In this episode you’ll meet Kara and her nine-year-old son, Bennett. Bennett is a middle child and his mom shares about the unique relationships he has with each of his brothers. Kara reflects on how she navigated getting in-home nursing support - spoiler, it was with the help of other disability parents, not professionals (a typical experience in our community) - and how the support is critical to helping her maintain employment as a teacher as well as her sanity when caregiving gets medically challenging. Bennett often requires respiratory interventions and Kara shares how she manages his needs and all the equipment that’s involved with keeping him safe and healthy. If you have a respiratory kiddo with CDKL5, you’ll likely identify with this conversation!
Thanks for joining us, Kara!
SHOW NOTES
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