184: Rachel’s Story | Widowed During Pregnancy, Misdiagnoses, + Sibling Dynamics

At 28 weeks pregnant with her third child, Rachel experienced the unimaginable—losing her husband in a sudden tragedy. What followed was a whirlwind of grief, survival mode, and a cross-country move while still carrying her son, Wells. But it wasn’t until after his birth that another challenge emerged: developmental delays, medical concerns, and the beginning of a diagnostic odyssey.In this episode, Rachel shares her family’s long road to a rare diagnosis, the complicated emotions of realizing your child’s future won’t look like you imagined, and the unique challenges of raising a disabled child as a solo parent. She shares the unique challenges of raising a hyper-social child who struggles with deep friendships and the sibling dynamics that come with disability.If you’ve ever found yourself grieving what could have been while still trying to embrace what is, Rachel’s story will resonate.Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!Links:Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!Fill out our contact form to join upcoming discussion groups!Follow Rachel on Instagram @rachel_horne!Follow the JdVS Foundation on Instagram @jdvs_foundation!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!