Telling Penny About When She Was Born, and an Interview with Family Life

Yesterday, Penny had a two hour delay from school. We took Marilee and William to their school, ran a few errands, and then shared a snack at our local coffee shop. She jumped in a few puddles in her snow boots (we still have about 18 inches left from last week’s blizzard, along with sloppy melty stuff all over the place), and she asked if we could spell words. We talked about school that day. We told stories. As she often does, she asked me to tell the story of when she was born. I went through my normal narrative, and when I got to the point after she was born and she looked so beautiful and we just loved her loved her loved her, she said, “I don’t want to hear the next part.”

The next part is when I tell her that the doctors told us she had Down syndrome, and we felt sad and scared, until we learned more about Down syndrome, and about her, and we didn’t feel sad and scared anymore.

I don’t want to hear the next part.

I cried when Penny said she didn’t want to hear it, not because I still feel sad or scared, but because I wish that I had been prepared to welcome her without that sadness or fear. I wish I lived in a culture in which her life could be immediately celebrated as easily as my other children’s. And I hope we are making some small steps towards becoming that culture, in which we recognize that every baby’s life is fragile and uncertain, and every baby’s life could involve suffering, and every baby’s life could involve great joy.

I didn’t tell her the rest of the story yesterday. We just shared our blueberry scone and she spelled “night” and “school” and “mailbox.”

Part of the work I’m doing in response to Penny is to write and talk a lot about prenatal testing and the questions parents could ask themselves before their children are born in order to be better prepared for whoever comes into their lives. I had the opportunity to talk with Martha Manikas-Foster of Family Life Radio last week, and our conversation is now available as a podcast. She was interviewing me in response to my new ebook What Every Woman Needs to Know About Prenatal Testing, and we talked about how women can use prenatal testing to be prepared when their children arrive, and also about how women can make responsible choices to decline the testing. The podcast of our 30-minute conversation is available here.

In addition, shorter portions of our conversation will be part of Family Life’s mid-day broadcast today. You can tune in around 12:20 to hear more.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Your response to Penny – honoring her desire not to hear the next part – is a wonderful moment in being her mom, AJ. At least that’s how I see it.
    Tim

  2. Yesterday [for the first time ever] I testified at a state legislative hearing. Because I always get emotional retelling how we received our diagnosis, I planned on omitting it. That was until a friend said that part was needed to have an emotional impact. She was right, but afterward I explained how I wish those emotions weren’t so easily brought to the surface whenever I tell our story. She said she thinks that’s how it is for almost all of our families. It’s one of the most impactful things that have happened at that point in our lives–heck, just having a baby is usually cited as the biggest event or happiest day for most people. I don’t know if we’ll ever get to the point where there is celebration at that moment, but I do like all the stories that celebrate the moments throughout the lives of our loved ones with Down syndrome.


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