Cynthia grew up with an older brother, Carlos, who has Prader-Willi Syndrome. She did not learn of his actual diagnosis until their mother passed away and she became his guardian. These past few years she has really stepped into her role as caretaker, researching and learning about this disorder and how she can best help her brother. He has lost 200 lbs, attends an adult day center where he plays sports and has a friend who shares his diagnosis and is still a companion to Cynthia. As she says, “We need each other”. In this conversation, Cynthia shares with us her story. We discuss the differences in relationships between parent and child, and siblings, and the expectations and behaviors that result from that. Cynthia also shares with us some advice on how to prepare our children for the possibility of becoming guardians of their siblings. Cynthia is an inspiring woman, a delight to speak with and a beautiful example of the power of family.
Ep7 - Take 'em as they come
I began this episode going back to the beginning, trying to fill in some of our story around Freya's infant feeding issues. What came out after was the unexpected and confusing grief I experienced watching my friends' babies grow and do things my daughter could not. Sometimes we are so good at masking and covering strong emotions that we forget they are there, only to have them rise up when we go back and tell our story.
Ep6 - Siblings
The first of many conversation about the effects on siblings of children with special needs. A place to find help, and why we should keep hope.
Ep5 - In the Trenches with Jessy
Welcome back. Now we hear someone else’s story, a family on the emotional journey of adoption and the eventual diagnosis of a chromosome disorder so rare it does not have a name. My friend Jessy, whose daughter’s diagnosis is a string of letters and numbers, has no knowledge of anyone else with this disorder. So if anyone listening knows of this disorder, or anyone with it, you can email me at walkingwithfreya@gmail.com and I will gratefully pass you along to her.
I really enjoyed sitting with Jessy, hearing her story and connecting with her in this way. But you might want to grab some tissues. This is a very real, very honest talk about the challenges of raising a child with special needs. But in the end we get some sage advice from someone who lives, as she says, in the trenches.
Ep4 - Diagnosis
This is the story of when we received Freya's diagnosis and how I handled it. I share a poem, "Kintsugi" that I wrote describing the emotions, the turmoil and what we gained from that moment. I close this episode with information on Prader-Willi Syndrome as found on the website pwsausa.org.
Ep 3 - The Time Between
For three and a half months we cared for our baby who was hypotonic, not eating well, sleeping too much and generally not thriving. We did not have answers for why. This episode deals with the fear and heart ache of those months, along with the ways that we coped.
Ep2 - Birth Story
To begin this journey, I tell Freya's birth story, when my desired home birth became a much feared cesarean.
Ep1 - Intentions
In this episode I explain my motivations and intentions for creating this podcast, and how people may get in touch and share their stories.