March 14th, 2021

Not long ago I heard from a couple I’d never met, parents of a child with Down Syndrome. They host a podcast called “If We Knew Then” to share useful conversations about Down Syndrome advocacy and parenting. The situation was this: in navigating the school system on behalf of their son—and also in everyday outings to the park and grocery store—they’d consistently come up against negativity, resistance, and insensitivity. They were tired of fighting society. They were frustrated and angry. They’d lost trust in the experts and institutions, over and over. Would nothing ever change? And what should they do with all these bad feelings?

I wasn’t sure how useful I could be. We had different lives. But we talked, and then we talked again. They shared their experiences and I shared mine. Along the way I realized that the circumstances didn’t really matter. Parents are parents and people are people, and we all face challenges we can’t get ahead of. Don’t you ever feel as if you are paddling alone against a tide of greater forces just because you are trying to do something good and right? Trying to make things better? We all do.

If you are advocating for a child in the school system or a family member in the healthcare system, if you are advocating for progress against a world that is standing in your way, I encourage you to listen to our conversation. At first, you might not think it applies to you, but there’s medicine in it. The medicine is love. And as it turns out, the medicine was for me too.

If We Knew Then podcast

Photo by Andrew Draper on Unsplash


  1. My friend (who has a child with Down) calls children with Down Downies. I’ve been fortunate enough to meet several Downies in my life and they were all a true joy to behold and encounter. When you meet them it can be easy to see why the people who know them love them so completely.
    Byron Katie says: “Do you want fear in your life? Get a future.” I find that in today’s world people find it difficult to look at a child (any child) and project a future onto that child. With Downies there will only ever be the NOW. It is difficult for a lot of people to be in the now and not mentally escape into the future. My heart goes out to your friends and to their child.
    My friend always says “I was born in order be my son’s mother.” and I find that an incredibly moving thought.

    Comment by Simone — March 15, 2021 @ 7:09 am

  2. PS I lost a not int the sentence: “ people find it difficult to look at a child (any child) and NOT project a future onto that child.”

    Comment by Simone — March 15, 2021 @ 8:59 am

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