205: Our Relationship With Our Child’s Medical Team w/ Madeline
For medically complex families, relationships with ourchildren’s medical teams are anything but simple.
In this episode, Madeline and Alyssa dig into what makesthem so emotionally loaded: the power imbalance, the fear of being dismissed,the exhaustion of coordinating between specialists, and the pressure to keepeveryone “on your side.”
We also talk about the moments that build trust — and theones that completely break it — plus what it feels like to train providers onrare diseases and advocate in systems that weren’t built for kids like ours.
If you’ve ever struggled with the emotional…
The skinny
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