By: Amelia S.
By: Amelia S.
Hi, I’m Amelia. This is my husband, Brandon, and our son Wilson. Wilson was born in November of 2020.
If being pregnant during a global pandemic wasn’t stressful enough, at 28 weeks, we discovered Wilson was growing at a slower rate and had a heart defect. This was the start of our adventure into a life affected by disability.
Just a few hours after he was born and whisked away to the NICU, we were invited to join rounds. In an open NICU in front of other doctors, nurses, and parents, we were informed that they thought Wilson had a genetic disorder called Cornelia de Lange Syndrome. We struggled to understand what this meant. The doctor bluntly told us, “This is bad news.” We were given a fuzzy handout listing all the challenges people with CdLS can face.
Wilson, by Amelia Simmons
We were sad and angry. Our brains could not imagine a future that wasn’t defined by struggle and limitation. Wilson was the first person in my family and community with a disability. I had no frame of reference of how a life characterized as disabled could be full of joy.
Over time, we realized our son’s diagnosis did not cause the pain we felt. The grief we experienced came from our belief that goodness and belonging were linked to ability and achievement. We clung to this fixed idea of good without knowing it. Once we loosened our grip on our version of good we began to see God’s goodness in our son and those around us.
This openness allowed the seeds of a new life to sprout. We want this community to be the warm-up to disability that 2019 Amelia and Brandon needed to prepare them for the life changes coming in 2020.
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