I had the pleasure of speaking with Courtney, an older sister to Max – an adult with PWS. As an adult Courtney has moved into the role of counselor, dealing with trauma and eating disorders. In out time together she spoke about growing up with a brother with special needs – how it was just a part of their life, learning to adapt, the moment she became his champion, their relationship as adults and how he has been an inspiration to her in her life.
I spoke with Emily Felt, a mother to 6 year-old Olivia with PWS. She talks about how Olivia’s birth and diagnosis affected her, the grief that came from it, and how one session with a therapist helped shift her outlook dramatically. We discuss the frustrations we have with doctor’s feeling like they need to harp on the negative aspects, what needs to be fixed or treated, without the balance of positives – what is working, what is going well. Emily is also in the process of creating something that I personally am very excited about: Food Gratitude: A Positive Psychology Inspired Toolkit for Families of Kids with PWS. This is to help families with PWS kids to create positive, anxiety-free experiences with food, how to find create a healthier relationship with food and meal time, and a more…but I’ll let Emily tell you more about it.
Without research and the knowledge gained from this research, most of our kids and adults with Prader-Willi Syndrome would face more difficulties in their lives. Thankfully, with the continued effort of the Foundation for Prader-Willi Research, there are new treatments and understandings of the challenges with PWS. This episode is an interview with Susan Hedstrom, the Executive Director of FPWR and fellow PWS mom. She speaks on the who, what, how and why of FPWR.
May is Prader-Willi Awareness Month! This episode is the start of a month long dive into the world of PWS and the ways in which families, doctors and organizations are fighting for the lives of our children. I spoke with Gen, the mother of a young girl with PWS. We share battle stories, tips for success and a few good laughs. This is a conversation between two mamas who have found themselves on similar paths and are trying to figure out which way to hold the map. This conversation is not just for PWS parents and caretakers, but for anyone trying to understand how to navigate the waters of having a child with special needs.
Laura is a dear friend and local midwife. She was with me through Freya's pregnancy and post-cesarean care. We talk about ways to emotionally process having an unexpected cesarean and the importance of having a chance to bond with your baby before a diagnosis is given, if medically safe that is. Laura tells us of her AskMidwife707 podcast that will be coming out in May, a place for women to share birth stories and information for those interested or invested in midwifery care. She closes the interview with some advice for care providers on the issue of when to tell parents about their new baby's diagnosis. For those of you listening on iTunes, I tagged on the past episode as iTunes still says it is temporarily unavailable. We'll try it this way and see if iTunes will play it.
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.
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.