Theme: Goals of Care

There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.

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There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.

When the clinicians don’t give much detail: A frank telling of all the exhausting self-discovery and self-education that these parents had to do to anticipate what their child’s medical needs and care would require — by going to OTHER parents. “We had to get to the end OURSELVES. It could have been handed to us at the beginning. I felt like I was own talking to other parents on the Internet.”