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S3E11: Medically Complex Families with Sarah Hilmer
Sarah Hilmer is a mother of three, a social advocate, a trail runner, and someone who has spent the last four years learning how to live a life that looks much different than the one she planned.
In 2021, Sarah's daughter Juju was born healthy by every visible measure. But in the months that followed, signs of a feeding problem led to a hospitalization, then an X-ray that showed something unexpected, then a surgical call that changed everything. Juju had a Type 3 laryngeal cleft, a rare abnormality where the back wall of her airway had never fully formed. Every time she swallowed, she was slowly aspirating into her lungs.
What followed was surgery using rib cartilage to reconstruct her airway, a tracheostomy, and over 15 surgeries and extensive hospitalization.
Now, as a thriving five-year-old, Juju still breathes through the trach today. In this conversation, Sarah talks about what 2022 actually looked like for her family, managing without home health care support, finding ways to create fun family memories, then slowly shifting the goal from getting the trach out to helping Juju live her life as a fun-loving kid with a big personality.
She also talks about what the medical system gets wrong when it uses the word "fix," working with Juju's specific needs, how her marriage held under the sustained pressure, and what it meant to prepare herself emotionally to bring her third child, into the same room where one of Juju's most serious emergencies occured.
ABOUT SARAH HILMER
Sarah is a mom of thre who lives, works, and adventures all around the San Francisco Bay Area. She is a social advocate, community builder, and trail runner. She is most happy when she's in the forest or at the ocean with her kids.
The Happily Never After is a podcast that features stories of big endings that led to personal breakthroughs. While endings can hurt, they also provide opportunities to heal and grow, and sometimes, they even set us free. Endings can offer an opportunity to begin anew, in a better way, and that’s what we’re here to talk about.
In 2021, Sarah's daughter Juju was born healthy by every visible measure. But in the months that followed, signs of a feeding problem led to a hospitalization, then an X-ray that showed something unexpected, then a surgical call that changed everything. Juju had a Type 3 laryngeal cleft, a rare abnormality where the back wall of her airway had never fully formed. Every time she swallowed, she was slowly aspirating into her lungs.
What followed was surgery using rib cartilage to reconstruct her airway, a tracheostomy, and over 15 surgeries and extensive hospitalization.
Now, as a thriving five-year-old, Juju still breathes through the trach today. In this conversation, Sarah talks about what 2022 actually looked like for her family, managing without home health care support, finding ways to create fun family memories, then slowly shifting the goal from getting the trach out to helping Juju live her life as a fun-loving kid with a big personality.
She also talks about what the medical system gets wrong when it uses the word "fix," working with Juju's specific needs, how her marriage held under the sustained pressure, and what it meant to prepare herself emotionally to bring her third child, into the same room where one of Juju's most serious emergencies occured.
ABOUT SARAH HILMER
Sarah is a mom of thre who lives, works, and adventures all around the San Francisco Bay Area. She is a social advocate, community builder, and trail runner. She is most happy when she's in the forest or at the ocean with her kids.
- Follow Sarah on Instagram at @sarahhilmer
The Happily Never After is a podcast that features stories of big endings that led to personal breakthroughs. While endings can hurt, they also provide opportunities to heal and grow, and sometimes, they even set us free. Endings can offer an opportunity to begin anew, in a better way, and that’s what we’re here to talk about.
- New episodes every Tuesday.
- Follow @thatheathermcg on IG for related content and discussion.
- Read The Happily Never After on Substack at https://thehappilyneverafter.substack.com/
- Learn more about Heather McG at www.heathermcg.com
View all episodes
By Heather McGinley
5
22 ratings
Sarah Hilmer is a mother of three, a social advocate, a trail runner, and someone who has spent the last four years learning how to live a life that looks much different than the one she planned.
In 2021, Sarah's daughter Juju was born healthy by every visible measure. But in the months that followed, signs of a feeding problem led to a hospitalization, then an X-ray that showed something unexpected, then a surgical call that changed everything. Juju had a Type 3 laryngeal cleft, a rare abnormality where the back wall of her airway had never fully formed. Every time she swallowed, she was slowly aspirating into her lungs.
What followed was surgery using rib cartilage to reconstruct her airway, a tracheostomy, and over 15 surgeries and extensive hospitalization.
Now, as a thriving five-year-old, Juju still breathes through the trach today. In this conversation, Sarah talks about what 2022 actually looked like for her family, managing without home health care support, finding ways to create fun family memories, then slowly shifting the goal from getting the trach out to helping Juju live her life as a fun-loving kid with a big personality.
She also talks about what the medical system gets wrong when it uses the word "fix," working with Juju's specific needs, how her marriage held under the sustained pressure, and what it meant to prepare herself emotionally to bring her third child, into the same room where one of Juju's most serious emergencies occured.
ABOUT SARAH HILMER
Sarah is a mom of thre who lives, works, and adventures all around the San Francisco Bay Area. She is a social advocate, community builder, and trail runner. She is most happy when she's in the forest or at the ocean with her kids.
The Happily Never After is a podcast that features stories of big endings that led to personal breakthroughs. While endings can hurt, they also provide opportunities to heal and grow, and sometimes, they even set us free. Endings can offer an opportunity to begin anew, in a better way, and that’s what we’re here to talk about.
In 2021, Sarah's daughter Juju was born healthy by every visible measure. But in the months that followed, signs of a feeding problem led to a hospitalization, then an X-ray that showed something unexpected, then a surgical call that changed everything. Juju had a Type 3 laryngeal cleft, a rare abnormality where the back wall of her airway had never fully formed. Every time she swallowed, she was slowly aspirating into her lungs.
What followed was surgery using rib cartilage to reconstruct her airway, a tracheostomy, and over 15 surgeries and extensive hospitalization.
Now, as a thriving five-year-old, Juju still breathes through the trach today. In this conversation, Sarah talks about what 2022 actually looked like for her family, managing without home health care support, finding ways to create fun family memories, then slowly shifting the goal from getting the trach out to helping Juju live her life as a fun-loving kid with a big personality.
She also talks about what the medical system gets wrong when it uses the word "fix," working with Juju's specific needs, how her marriage held under the sustained pressure, and what it meant to prepare herself emotionally to bring her third child, into the same room where one of Juju's most serious emergencies occured.
ABOUT SARAH HILMER
Sarah is a mom of thre who lives, works, and adventures all around the San Francisco Bay Area. She is a social advocate, community builder, and trail runner. She is most happy when she's in the forest or at the ocean with her kids.
- Follow Sarah on Instagram at @sarahhilmer
The Happily Never After is a podcast that features stories of big endings that led to personal breakthroughs. While endings can hurt, they also provide opportunities to heal and grow, and sometimes, they even set us free. Endings can offer an opportunity to begin anew, in a better way, and that’s what we’re here to talk about.
- New episodes every Tuesday.
- Follow @thatheathermcg on IG for related content and discussion.
- Read The Happily Never After on Substack at https://thehappilyneverafter.substack.com/
- Learn more about Heather McG at www.heathermcg.com
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