Excerpts from an article by Hillary Savoie.
After a totally uneventful pregnancy, Oscar was born with a rare genetic mutation neither Smith nor her husband carry. He spent the first two months of his life in the NICU due to uncontrolled epilepsy and feeding difficulties before testing revealed his genetic mutation and doctors found medication to manage his seizures. When Oscar was discharged at 2-and-a-half months old, Smith, 33, suddenly found herself staring down life as a millennial raising a child with special needs. We came home to a complicated life we weren't expecting to live. We still don't really know what sort of prognosis he has — so having a whole closet full of kids clothes up to 2 years old, it is like: Will my kid ever get to wear this? Will my kid ever get to do a lot of things.
Hearing Smith's words, I am momentarily stunned by the memory of a time I was certain my daughter Esme, who has multiple rare genetic mutations, would not survive: Overcome with grief, I stood in her closet sobbing and throwing piles of her precious baby clothes in bags intended for Goodwill, the sight of them was unbearable to me. Six years into being Esme's mother, I still find myself relieved to know I am not alone in my responses to grief. At the same time, I am also devastated to know there are other mothers who cannot expect their children to become independent, to be healthy, to be safe, or even to survive.
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