Ep 41 - Ali, PWS

Ali is mother to Dean, a 10 year-old boy with PWS. She talks about his time in the NICU and what it was like to have a baby in the hospital and a toddler at home. The usual PWS suspects are here in this conversation – Gtube, surgeries, speech issues, anxiety, OC tendencies, and of course the topic of food. We also talk about the very real cycle of a special needs parent – breaking down, processing and then moving on – and the seasons we experience in our lives, the times where we dive into the resources and information, ready to tackle the next obstacle ahead, but also the times we must retreat into ourselves and our families, and the inevitable insecurity and question that rears itself at these times, “Should I be doing more?”