Parenting Children with Limb Differences – Details, episodes & analysis

In part 2, Emma discusses the importance of having open dialogue with our children about their limb difference and working with them to develop the language to effectively and confidently manage questions about their limb difference (or for our typical children, to discuss their sibling’s limb difference). She also shares her aspirations in connecting every family who finds out that they will have a child with a limb difference (whether at scan or at birth) with resources, including home visits.

 Emma also acknowledges and addresses the grief associated with finding out she would have a different baby then expected (that no one talks about but many feel), along with how reframing, and moving toward acceptance and excitement of the new vision, has helped her; especially, looking forward to what she imagined her child would teach her.  More conversations around adaptive equipment, challenges and successes around managing activities of daily living are also addressed in part two of this episode.

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Wrapping up season 1 of PCLWD, this is a two-part, heartfelt interview with Emma Gilpin.  Emma is a Pediatric Nurse and mom of two, located in the U.K.  Her eldest child, Miles, was born with an upper limb difference.  Emma is also a major limb difference advocate who is involved with both Reach and LimbBo, two fantastic organizations in the UK. 

In part one, we learn more about Emma and Miles. Emma shares how learning of Miles’ limb difference and researching led her to connect with Reach and LimbBo. She also shares how her journey with motherhood and her experiences have informed and inspired her professional work, and igniting her passion for supporting the limb difference community. 

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In this episode, Rose Andrews shares with us how despite facing adversity throughout her life (including being surprised at her daughter's birth with her daughter's upper limb difference and entering postpartum during a worldwide pandemic), she has been able to reframe her life into a positive perspective, practice gratitude, and lean on resources to navigate challenges.

Please note: we're a couple of moms who are recording remotely from our homes. Throughout this episode, you may hear children and other noises in the background. We've done our best to edit out these background noises but there may still be some tiny voices here and there. We thank you for your patience with us as you ignore these background interferences and listen to Rose's powerful messages around love, understanding, and providing a safe, inclusive space for her daughter.

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In this educational episode, Tarah Behren returns and talks with Kari and Ali about experiences with the Early Intervention program, the transition to the Early Childhood program through the school district, IEPs and 504 plans. Tune in for helpful tips on navigating and advocating for your child!

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In this episode, Kari and I discuss all things back to school. From handing out introduction flyers to teachers and staff, to making sure our littles have what they need to be prepared for the year ahead, Kari and Ali share their ideas and hopes for a great start to the new school year. They also discuss their admiration for the athletes competing in the upcoming Paralympics.

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In this episode, Tarah Behren shares her strength, courage, and heart with us as she reflects on the last several years. Tarah explains the details of learning about her daughter Melanie’s limb difference at the 20-week anatomy scan, all of the emotions that came with that, and all of the unexpected and wonderful things being Mel’s (and Kelsey’s) mom has gifted her. Additionally, as a special education teacher, Tarah offers a unique perspective and provides us with her thoughts about resources, advocacy and inclusion. 

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In this episode, Kari shares her personal journey of parenting a child with a limb difference. From the unexpected moment of discovering Mackenzie’s limb difference leading to a chaotic birth experience to navigating the challenges and joys of the first five years, Kari offers raw and honest insights. Join us as we explore the emotional rollercoaster, the lessons learned, and the unwavering love that has shaped their family's story.

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In this episode, we learn about Ali's personal journey before and after Tyler's arrival. Together, we explore the complexities of Ali's experiences; from fertility issues, to the excitement of pregnancy with Tyler, to the shocking news about Tyler's limb difference, and beyond. Ali offers a deep level of openness and compassion as she shares her thoughts and life with Tyler over the past few years. Join us, as we discuss the challenges and triumphs that have led to Ali's family's beautiful and unique life with Tyler.

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This episode briefly explains our "why" for this podcast. Our primary reason for the Parenting Children with Limb Differences (PCWLD) podcast is to CONNECT with parents - especially moms - who have children with a limb difference. We hope that you can find some comfort, validation, empathy and community here. We want you to know - YOU ARE NOT ALONE!

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In this episode, Rachel shares with us her personal journeyfrom the challenges of conception and Miles’ traumatic birth. She also shares with us how she learned about Miles' limb differences (with a diagnosis of amniotic band syndrome), and walks us through Miles’ development and surgeries. Rachel identifies the resources that have been helpful and offers advice for other parents, as well as her hopes for Miles' future.

DISCLAIMER– there is some descriptive content involving Rachel's traumatic birth story that may be difficult for some listeners to hear.

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