special needs

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.  

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.