Sarah and Steve
Sarah and Steve, parents of Emerson, who died at age 16 months from Gaucher Type 2.
We were actively protecting her from things that wouldn’t be right for her.
The mother of an infant shares how electing NOT to choose medical interventions at first felt like she wasn’t actively caring for her child and how palliative care helped her understand that ‘doing things’ wasn’t necessarily protecting or helping her daughter. Reframing to see that sometimes less is more.
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We were actively protecting her from things that wouldn’t be right for her.
We are learning to be patient, rebuilding slowly.
Finding Hope
The Diagnostic Odyssey: It never occurred to me that it would be fatal.
