by Marissa Bishop
On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights. Our goal? To weave a tapestry of vibrant community stories. Have a CDKL5 story to share? Get in touch!
Language
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Publishing Since
1/1/1970
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June 1, 2026
<p><strong>Episode 44: Exploring Caregiver Guilt (Part 3)</strong></p><p>Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.</p><p>We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part three of this series we explore feelings of guilt related to decisions we’ve made. We’d love to hear your comments or feedback. Thanks for listening.</p><p><br></p><p><strong>SHOW NOTES</strong></p><p>Check out our website and sign up for our quarterly newsletter at <a href="http://www.cdkl5incolor.com"><strong>www.CDKL5inColor.com</strong></a></p><p>Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!</p><p>Email us to be on the show! <a href="mailto:CDKL5inColor@gmail.com"><u>CDKL5inColor@gmail.com</u></a></p><p>Thank you to our 2026 Airwave Ally Sponsor - <a href="https://www.ucb-usa.com/Patients"><u>UCB Pharma</u></a>!</p><p><br></p><p><strong>LINKS:</strong></p><p><a href="https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS"><strong>Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network</strong></a></p><p><a href="https://courageousparentsnetwork.org/"><strong>Website - Courageous Parents Network (search guilt)</strong></a></p><p><a href="https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt"><strong>Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today</strong></a></p><p><a href="https://www.caregiver.org/resource/emotional-side-caregiving/"><strong>Article - The Emotional Side of Caregiving, Family Caregiver Alliance</strong></a></p><p><a href="https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/"><strong>Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling</strong></a></p><p><a href="https://www.amandagriffithatkins.com/book"><strong>Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins</strong></a></p><p><a href="https://dravetfoundation.org/caregiver-resources/caregiver-connect/"><strong>Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)</strong></a></p><p><br></p>
June 1, 2026
<p><strong>Episode 43: Exploring Caregiver Guilt (Part 2)</strong></p><p>Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.</p><p>We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part two of this series we explore feelings of guilt related to the negative feelings we sometimes have. We’d love to hear your comments or feedback. Thanks for listening.</p><p><br></p><p><strong>SHOW NOTES</strong></p><p>Check out our website and sign up for our quarterly newsletter at <a href="http://www.cdkl5incolor.com"><strong>www.CDKL5inColor.com</strong></a></p><p>Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!</p><p>Email us to be on the show! <a href="mailto:CDKL5inColor@gmail.com"><u>CDKL5inColor@gmail.com</u></a></p><p>Thank you to our 2026 Airwave Ally Sponsor - <a href="https://www.ucb-usa.com/Patients"><u>UCB Pharma</u></a>!</p><p><br></p><p><strong>LINKS:</strong></p><p><a href="https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS"><strong>Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network</strong></a></p><p><a href="https://courageousparentsnetwork.org/"><strong>Website - Courageous Parents Network (search guilt)</strong></a></p><p><a href="https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt"><strong>Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today</strong></a></p><p><a href="https://www.caregiver.org/resource/emotional-side-caregiving/"><strong>Article - The Emotional Side of Caregiving, Family Caregiver Alliance</strong></a></p><p><a href="https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/"><strong>Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling</strong></a></p><p><a href="https://www.amandagriffithatkins.com/book"><strong>Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins</strong></a></p><p><a href="https://dravetfoundation.org/caregiver-resources/caregiver-connect/"><strong>Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)</strong></a></p><p><br></p>
June 1, 2026
<p><strong>Episode 42: Exploring Caregiver Guilt (Part 1)</strong></p><p>Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt.</p><p>We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part one of this series we explore feelings of guilt related to feeling like we are not doing enough. We’d love to hear your comments or feedback. Thanks for listening.</p><p><br></p><p><strong>SHOW NOTES</strong></p><p>Check out our website and sign up for our quarterly newsletter at <a href="http://www.cdkl5incolor.com"><strong>www.CDKL5inColor.com</strong></a></p><p>Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!</p><p>Email us to be on the show! <a href="mailto:CDKL5inColor@gmail.com"><u>CDKL5inColor@gmail.com</u></a></p><p>Thank you to our 2026 Airwave Ally Sponsor - <a href="https://www.ucb-usa.com/Patients"><u>UCB Pharma</u></a>!</p><p><br></p><p><strong>LINKS:</strong></p><p><a href="https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS"><strong>Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network</strong></a></p><p><a href="https://courageousparentsnetwork.org/"><strong>Website - Courageous Parents Network (search guilt)</strong></a></p><p><a href="https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt"><strong>Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today</strong></a></p><p><a href="https://www.caregiver.org/resource/emotional-side-caregiving/"><strong>Article - The Emotional Side of Caregiving, Family Caregiver Alliance</strong></a></p><p><a href="https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/"><strong>Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling</strong></a></p><p><a href="https://www.amandagriffithatkins.com/book"><strong>Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins</strong></a></p><p><a href="https://dravetfoundation.org/caregiver-resources/caregiver-connect/"><strong>Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)</strong></a></p><p><br></p>
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On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights.
Our goal? To weave a tapestry of vibrant community stories.
Have a CDKL5 story to share? Get in touch!
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