The mother of a baby born with a fatal condition describes how alone and unsupported she and her husband felt having to make a ‘choice’ for hospice care for their daughter. She wishes families understood that it can be a graceful decision, an OK decision, the right loving thing.

Parents Jordan and Julia describe how their baby daughter’s diagnosis of Infantile Epileptic Encephalopathy came with a “100% failure to thrive” prognosis and how they each internalized this in their own way and own time.

Parents Jordan and Julia describe how the vague and non-specific prognostication and conversation their medical team had with them was not helpful; they wanted an honest answer and clear options. “It was only when I made it very clear [what quality of life meant to me], that was when they were able to have the conversation with me. They could see how compromised she was. Why would they offer all of this care?… To do what?”

Parents Jordan and Julia describe their baby daughter’s early arrival, beginning in the NICU, and the slow trickle of bad news leading to a diagnosis of Infantile Epileptic Encephalopathy. “The screaming in my head was so loud.”

Bereaved parents Jordan and Julia explore the ways they are finding what to focus on about their daughter’s brief life – which memories to hold on to, which to let go of, how to maintain the connection and continue the bond. Jordan reads a poem he wrought on being Avery’s father.

Parents Jordan and Julia share how they didn’t hide their baby’s daughter end of life from their two-year old son, with guidance from the child life specialist, and how he now fully brings his sister up when talking about his family. “We didn’t make it scary or dark or unspoken.”