hydrocephalus

‘Our baby’s brain hadn’t divided. Parts were missing. I prepared my 3-year-old for the chance his baby sister may not come home. Everyday interactions felt like ripping open a wound.’

“We told others to not make plans for a baby shower. I didn’t want to have to return things if my baby died. In the shower, I’d cry out with all my heart just to be able to have my daughter no matter what difficulties she might have. As the date approached, I considered planning for the possibility of a funeral.”

‘The doctor said, ‘The parents need to understand there is no chance of their daughter having a meaningful life.’ I thought, ‘My daughter has meant more to me in the last 2 days than you will EVER mean to me.’

“What would our daughter have to do to be meaningful? Would she have to talk? Would she have to be able to solve math problems or perform in the school play? Graduating? Getting a job? Getting married? At what point would the doctor say, ‘Ok, you are meaningful now.”

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