Theme: Bereavement: The Grief Experience

Bereavement: This is very isolating. You don’t wake up and forget. We are holding on to what we know.

Page: 5 of 5

Bereavement: This is very isolating. You don’t wake up and forget. We are holding on to what we know.

Bereaved parents of a child diagnosed with an Arteriovenous Malformation (AVM) in the NICU speak eloquently about grieving – “In terms of how society works, what the norms are, you view things as you put in the work, you yield the reward. And for families like us, we don’t and it’s such a conundrum, it’s such a deeply unsettling thing that makes no sense that children suffer, that they die, that people just cast it out of thought. And we don’t have that luxury because we are still living with the impact of it. You don’t wake up and forget.”