prader-willi syndrome

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.