After her son was born, Lindsay Vanzandt just wanted answers.
She found medical journals, with tons of terms she didn’t understand. And then she found Hope for HIE, and so many other families just like hers.
“We immediately felt at home in the Facebook group, where we got more answers and more hope than we did at the hospital,” she said.
Lindsay’s son Owen began suffering seizures shortly after birth and spent 12 days in the NICU. Around 6 months old, he started showing delays and started physical and occupational therapy. Owen was diagnosed with hemiplegic cerebral palsy at 18 months, and struggles with fine and gross motor skills and expressive language. But he is also a happy little boy, who is thriving in preschool, Lindsay said.
For Lindsay, finding fellow HIE parents taught her how to advocate for her son, challenging specialists and doctors when she disagreed with their approach, and being prepared for his IEP meetings for school.
But it also changed her, by showing her a better insight into the world of special needs families she knew so little about before she became one.
She now serves as the secretary on the Hope for HIE foundation board.
The relationships she has formed with other parents have been life changing, Lindsay said. She has found knowledge, support, and hope.
“Hope is discovering tiny moments on this journey where you see that life doesn't have to be perfect to be beautiful and clinging to them when things get hard, when you feel defeated, or exhausted,” she said.
For Lindsay, hope means looking at what her son can do, not what he can’t do. It means not comparing him to other, typical children and counting him all on his own.
“Accepting that his brain injury happened and that I can't go back in time and change it has helped change my mindset of dwelling on each missed milestone and worrying about the future. Understanding that ‘delayed’ doesn't mean ‘never,’” she said.
Her advice to parents is to accept their journey and march ahead bravely, she said.