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Ep 08 Joanna Tomlin
Manage episode 285297130 series 2819027
Rachael Stevenson에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 Rachael Stevenson 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.
For Joanna Tomlin, life with 34-year-old Keisha, who has Rett Syndrome has been tough enough for the last few years, without a global pandemic.
In recent years, the family lost Keisha’s much beloved Dad, Mark, to cancer as well as dealing with another complex gastrointestinal disease for Keisha, on top of Rett Syndrome.
Despite all this, my conversation with Joanna was startlingly stoical, uplifting, inspiring and even funny at times. Jo, her two daughters and granddaughter have pressed on through the last year of lockdown, shielding Keisha at home and even surviving Covid.
What is it that gives someone this kind of resilience? Perhaps it’s your child being diagnosed with Rett Syndrome at a time when there was no palpable hope in research.
Maybe it’s being told so many times that your daughter is probably not going to survive the year. Or realising that the only way she is going to make it, is because of you; your determination, your action, your questions, your refusal to give in. All of this, over and over again.
In this heartfelt conversation, Jo and I explore these issues as well as just how they’ve managed on a practical level throughout the last year of lockdown. We talk about the compounding complexity of being a mixed-race family as well loving and caring for a severely disabled person. We discuss how Jo and her girls worked so hard to protect Keisha emotionally as well physically, when her Dad died, and how he lives on through the love of music they shared.
We hope you enjoy this episode! As always, Jo and I would love to know your thoughts. Please leave us a review on any platform. Don’t forget to subscribe so that you are reminded when new episodes are published. Thank you!
Resources:
PALS Patient Liaison and Advice Service
27 에피소드
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