45: The Story of Emery

Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced with countless appointments, tube feedings, and perplexing medical issues, all while being extremely sleep-deprived—Emery frequently wakes up at night due to pain. In this episode, Anna and I chat about the shift that occurred in her social circles after Emery’s arrival. She shares how she and Justen quickly became aware of their flaws and had to address them to withstand the constant stress. Anna also opens up about how the ways that Emery has made her a better person overall. Links: Our Sponsor, BetterHelp Counseling: https://www.betterhelp.com/therarelife Anna on Instagram: https://www.instagram.com/mothering_rare/ Madeline on Instagram: https://www.instagram.com/the_rare_life/