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.
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 firstname.lastname@example.org 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.
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.
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.
To begin this journey, I tell Freya's birth story, when my desired home birth became a much feared cesarean.
In this episode I explain my motivations and intentions for creating this podcast, and how people may get in touch and share their stories.