Acute Necrotizing Encephalopathy Stories

A mother’s story on reconciling your child after the trauma of Acute Necrotizing Encephalopathy.

 That original child(s) is now a ghost that lives with you every second, every minute and every hour of everyday. Our family lives with her ghost(s), the independent 3 year old that used to jump in every puddle that she saw (she can’t do that anymore), the 3 year that use to insist on pushing the grocery cart/stroller/wagon even if she couldn’t see over the handle. Bumping into people and whatever else was in the way. Testing our patience to it’s very limit. Yes, we realize that our child would’ve eventually outgrown this but we mourn that she never got a chance to be her original self. Trust me, if you’ve been through this or have lost a child, you get this. Childhood is so brief especially in this new society where everyone and everything moves so much faster. We lost her original self that first time and we got a new child that we got to know and continued to love just as much but we lost her once more.

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