on october 7, 2016 many lives changed. oscar dov beckman, the first child to amanda smith and ryan beckman and the first grandchild to the smiths and the beckmans, was born. he came into the world quietly and yelled minutes later. he was silent until his first seizure, which was noticed within his first day of life. oscar seized nearly 100 times a day during his first several weeks, which he lived in two hospitals. his parents read goodnight moon to their young mouse before tucking him in each of his 68 hospital nights. on december 13, 2016, oscar was diagnosed with a mutation on his scn2a gene, which was causing his intractable seizures, polymicrogyria, cortical visual impairment, hypotonia, feeding issues, among other problems; doctors said he will be profoundly disabled. the next day, oscar came home.
young mouse’s struggles and triumphs have inspired change among family, friends, and strangers. he moves people to love a little deeper; to be more empathetic; share with more honesty; to not grieve alone; to live truer lives; to find their community; to hug a little tighter; to see the world – and eachother – in a new way.
amanda smith is a new mother attempting to navigate parenting a child with profound disabilities – this new life; the after. in processing her shock, trauma, loss, and grief amanda has sought to share oscar’s story – as well as her own personal transformation – with those interested. her goals are twofold: to provide her son with a life filled with love and care as well as enrichment through sensory exploration and experiences; and to inspire people to form deeper connections with eachother by sharing their truest (oftentimes vulnerable) selves in conversations about disability, grief, mental illness, trauma, and other topics deemed taboo by many.
to balance the tough stuff, amanda also shares her two obsessions in this new life: true crime and bath products. (self care sounds trite but it’s real and it’s necessary.) consider those pages your own, personal, hand-selected aggregator!
amanda smith lives with her husband, ryan beckman; son, oscar; dog, brody; and cat, tyler, in nyack, new york. besides being a mother/caregiver/advocate, by day, she is a photo archivist and assistant director of a nonprofit arts foundation and by night, a lover of animals, (some) people, a good joke, beer, and (has a love/hate relationship) with art and art practice.