46. Guest Interview with Amanda B - Loving THE Amazing Grace

From There, To Here

Amanda shares a special story with hosts: A story of birth, loss, and moving forward. Amanda is mom to THE Amazing Grace. Most people believe that adding to your family of two should be exciting. But after having a miscarriage, Amanda and her husband got pregnant a 2nd time only to receive devastating and scary news that the baby was measuring too small and may have a hole in their heart. After lots of prayer and giving the outcome over to a higher power, Grace was born. She was indeed born small and did have to have surgeries to fix the hole in her heart - but that was just the beginning of her journey. Genetic tests showed that Grace had a very rare chromosomal abnormality called Emanuel Syndrome. Amanda explains what Emanuel syndrome is and how it affected Grace’s development. Amanda also shares how this rare diagnosis changed her and her husband’s life - forever. Learning how to care for all of Grace’s unique medical needs, many lengthy stays at the hospital, career changes, and 24-hour nursing care are just a few of the life altering challenges you’ll hear in this episode.

At the tender age of 13, Grace's journey on earth came to an end, leaving a void in their hearts. Despite the pain of loss, Amanda speaks passionately about how her family and friends have rallied together to honor Grace's memory. Through their collective efforts, they ensure that Grace's legacy lives on, touching the lives of others and spreading awareness about Emanuel Syndrome. In sharing this story, Amanda hopes to inspire others to embrace the lessons learned from Grace's life and carry her light forward.

While listening, you will hear us refer to the following episode:
41. Guest Interview with Alexa - Mother of a Medically Complex Child

Be sure to follow From There, To Here on Facebook & Instagram.