In the first part of this episode I introduced Lydia and her mother Danae.
We heard about the challenges they have faced not having a diagnosis for Lydia, and how they have come to cope with her relentless seizures.
In this part of the episode I explore how it is that Danae and I met, and the impact she had on my own ability to cope with Eva’s diagnosis.
The truth is, it was an email from Danae that was the flick of the switch I needed to decide once and for all that I wanted to be Eva’s mother, no matter what.
I recorded this interview while staying with Danae, Mark, Lydia and Jack in their home outside of Portland. It was a truly exceptional experience for me to meet this woman who had helped me so much, and to meet Lydia, the girl who had inspired Danae’s words.
It was particularly special, but also heart breaking, because Danae and Mark have found out through a recent MRI, that Lydia’s white matter in her brain has all but disappeared, and she is likely to get pneumonia and die due to this. They don’t have a timeline or any certainty, they just know their time with Lydia is limited. For me, that meant this was my one and potentially only chance to meet this girl, and thank her in person.
Lydia may never know the impact she had on Eva and on me. But I hope Danae and Mark know just what they mean to me. I just wish they could have met Eva too.
Later in this part of the episode we explore another project Danae has been involved in, Fierce Love. Danae, along with a group of mothers from United Cerebral Palsy, got together to work with Well Arts to write a play around their experience as parents of children with Cerebral Palsy.
Well Arts is a theatre group that partners with organisations and groups in the Portland, Oregon area to tell their stories and share their experiences on the stage. They serve diverse populations, facing a wide range of health and social issues.
During the episode you will hear a selection of audio clips from Fierce Love, including part of a scene where Danae and my email conversation first began.
The full DVD of Fierce Love is available for purchase. Email Susan Cushman
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