06/08/2026
Iāve been reflecting on a story that has sparked a lot of conversation in the Down syndrome community.
As a parent advocate, Iāve had the privilege of speaking with families at all stages of their diagnosis journey. My role is never to judge or persuade. Itās to listen, support, and meet families where they are.
Because of that, I understand the fear.
Iāve sat with it professionally, and Iāve lived it personally.
When Hudson was born and we learned he had Down syndrome, it felt like the ground shifted beneath us. Our midwives delivered the diagnosis with incredible care, but it still hit us like a freight train.
Not because of Hudson.
Because of the unknown.
Years later, during my pregnancy with Graham, we received a prenatal diagnosis of Down syndrome. During that process, a genetic counselor told me that I had been āstruck by lightning twice.ā
Iāve thought about that comment many times over the years.
By then, I already knew a child with Down syndrome.
I was raising him.
I knew the challenges. But I also knew the joy, the love, the growth, and the countless ways he had enriched our lives.
Thatās why the comment stayed with me.
Not because I believe there was ill intent behind it, but because it reflected something bigger: how often disability is still framed through fear, loss, or misfortune.
The truth is, my boys were never the scary part.
The unknown was.
And I wonder how much of that unknown exists because our society still struggles to fully embrace difference. If people with Down syndrome were more visible in our schools, workplaces, communities, and everyday lives, would the diagnosis feel quite so frightening?
I believe families deserve compassion and support as they navigate deeply personal decisions.
I also believe itās okay to acknowledge the sadness many in the Down syndrome community feel when these conversations arise.
For me, those feelings coexist.
I can hold empathy for parents facing impossible decisions while also wishing we lived in a world where disability was less feared, more understood, and more fully included.
Because the diagnosis was never the whole story.
And it never will be.