Watch: ‘My kid is human, that’s all. And that’s a lot’https://indianexpress.com/article/parenting/events-things-to-do/watch-my-kid-is-human-and-thats-a-lot/

Watch: ‘My kid is human, that’s all. And that’s a lot’

She added, “At five months old, she could not hold her head up like other babies, but she could hold this deep, intent eye contact. One friend said, ‘She's the most aware baby I've ever seen’.”

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When Heather Lanier’s daughter Fiona was diagnosed with Wolf-Hirschhorn syndrome, a genetic condition causing developmental delays, she was devastated. It took her a while, but she learn to say, “My kid is human, that’s all. And that is a lot.”

Sharing her journey, Lanier questions what makes life “good” or “bad” and challenging us to “take life as it comes”. She tells us, “Eventually, I learned that my daughter had an ultra-rare chromosomal condition called Wolf-Hirschhorn syndrome. She was missing a chunk of her fourth chromosome. And although my daughter was good — she was alive, and she had brand new baby skin and the most aware onyx eyes — I also learned that people with her syndrome have significant developmental delays and disabilities. Some never learn to walk or talk.”

She added, “At five months old, she could not hold her head up like other babies, but she could hold this deep, intent eye contact. One friend said, ‘She’s the most aware baby I’ve ever seen’.”

Initially, therapists focused on what was lacking in her child. She recalls, “I was really happy when Fiona started using her right hand to bully a dangling stuffed sheep, but the therapist was fixated on my child’s left hand.”

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She shared how one afternoon, lying on her back, her child managed to arch her back and roll over. “At first, I thought she’d gotten stuck there, but then I saw her reaching for something that her eye had been on all along: a black electric cord. She was a year old.”

Her perspective changed when she released her grip “about what made a life good or bad, I could watch my daughter’s life unfold and see what it was. It was beautiful, it was complicated, joyful, hard — in other words: just another expression of the human experience.”