What I Gain from Having a Child with Down Syndrome

Once a week I compile the reflections I’ve offered on Facebook into one blogpost. Here are the thoughts from the past ten days:

Wednesday, January 3, 2018

A friend of mine who is relatively new to Christianity said to me recently, “I think I’m becoming an evangelelical. Is that how you say it?” She said, “I used to be scared of that term but you explained once that it means person who shares the good news and I’ve started to tell people about God’s love and I love it.”

I’ve written here (and elsewhere) before about why I too love the word evangelical and why I want to be someone who shares the invitation to know God’s abundant love for us. I’ve also written recently about why I have walked away from the label evangelical even though I continue to see evangelicals (and Catholics and progressives and on down the line) as brothers and sisters in faith.

Tom Gjelten wrote about the state of evangelicalism in America for a year-end piece last week, and he made mention of my piece for the Washington Post on the topic.

In the midst of all the debate, maybe I should just start calling myself an evangelelical.


Wednesday, January 3, 2018

Ever since Penny was born, I’ve spent a lot of time thinking about the idea of a “common humanity.” What are the things that we all hold in common, no matter our political, racial, religious, gender, etc. identities?

For a while, I thought three things made up our common humanity: our belovedness, our brokenness, and our limitations. I’ve come to believe that can be summarized even more succinctly: what we all hold in common is love. The love that God has for each of us, and the love we give and receive whether to God or to one another in return. That’s what makes us human and what holds the power to heal our wounds and overcome our divisions.

I write a LOT more about that in White Picket Fences, but it was on my mind today when I read David Brooks’ recent op-ed and this line in particular, “From an identity politics that emphasized our common humanity, we’ve gone to an identity politics that emphasizes having a common enemy.”

There’s a sad truth to Brooks’ analysis. I’m holding out hope for love as the answer.


Friday, January 5, 2018

“Thank you for remembering me on my birthday.”

Not only have the past two days been snow days here in Connecticut, but Penny has also had insomnia. She was up at 4 yesterday and at 5 today. The good news is that she has written all her thank you notes for Christmas and her birthday and then some. Again and again, her notes included the words, “Thank you for remembering me on my birthday.”

We surprised the kids with a trip to Florida–their big Christmas present (and ours)–for five days this year, which meant we were far away from friends and extended family when Penny’s 12th birthday rolled around. We didn’t have any physical gifts for her to open. She isn’t someone who cares much about stuff, so Peter and I were giving her a trip to a dance performance with some friends, and Marilee and William hadn’t even purchased presents yet, much less wrapped them and packed them for Florida. So I was a little worried her birthday would be a bust.

As the day went on, a few family members sent video greetings and text messages. Her best friend from elementary school sent a text too. We went to the pool, Penny’s favorite place in the world. And after lunch we decided to visit Books and Books, the local bookstore in Key West. We had heard it was owned by Judy Blume, one of Penny’s favorite authors (she has read half a dozen Judy Blume books, and all more than once). But we weren’t expecting Judy Blume to be there in person.

We spotted her as soon as we walked in, and within minutes she had walked over to us and started talking with the kids. We talked about Fudge and her voice as the narrator of the audiobooks about him and his big brother Peter. She pointed out some of her newer books that the kids didn’t know about yet. She signed the books they picked out. “Happy Birthday, Penny.” And then, with the kids a little starstruck, we took a picture.

Later in the day, Penny sat by the ocean reading her new Judy Blume book. A harpist. Yes, a harpist, began to play for the two of us. “Tell her its my birthday,” Penny whispered. A few minutes later, I got a text from Maddie.
Maddie was Penny’s first long-term babysitter. She came into our lives when Penny was one and Maddie was 16. Every summer for at least the next five years, Maddie was our go to helper in every way. We all adore Maddie. Since then, she has graduated from college with a degree in special education and now works with kids with special needs in Charleston, SC. Her boys (almost all of the kids in her classroom are African American boys) love her, and she loves them, as unlikely a pairing as they are.

Maddie texted me to ask when she could call to wish Penny a Happy Birthday. Five minutes later, my twelve-year old girl had walked away from me, my phone to her ear. They talked for a while, and she sat back down, beaming.
Penny did not open one present on her birthday. But people remembered her, and it meant the world. And honestly, as the sun set over the ocean and the harpist played Happy Birthday and I considered our encounter with Judy Blume, I couldn’t help but think that God remembered Penny’s birthday too.


Monday, January 8, 2018

I can’t remember why we were talking about the Garden of Eden last night at dinner, but in the midst of the conversation Marilee said, “Can we go visit it?”

Peter said, “No. It isn’t on a map. We aren’t sure where it was.”
Ever the English major, I chimed in with, “We aren’t even totally sure from the Bible if it was a place that they knew the location of or if it was a story that describes how all of us humans end up turning away from God.”
“I wouldn’t have listened to that snake!” Marilee said.

“We all listen to the snake,” Peter said.

Marilee frowned. Then her eyes got wide and bright. “I know! Let’s Google it!”
We assured her this plan–for all the wonders of the Internet–still wouldn’t take her to Eden.

She paused again, thinking. “I know,” she finally said. “The way to find the Garden of Eden is to follow God’s love.”


Tuesday, January 9, 2018

I had the privilege of talking with a mother who has received a prenatal diagnosis of Down syndrome with her third child today. I told her about Penny, and how I used to be afraid and now I have great hope, and I told her that my grief has turned to joy, and I told her of the gift that Penny is in my life and in our family.

At one point, she said, “Yes, everyone says that kids with Down syndrome are a gift and that they teach you to be patient and compassionate.”

“Yes,” I said, “that’s true. But it’s more than that.” I paused, trying to find the words.

And then I remembered what William said to Penny on her birthday. “I really admire the way you don’t get stressed out about time,” he said. And it’s true. Penny likes to be on time, but she doesn’t worry about time. She likes to accomplish things, but she doesn’t insist that she accomplish them immediately. She is willing to practice for years. She doesn’t hold grudges.

I said to this woman on the phone, “It’s not just that by having Penny in my life I have needed to learn how to be more patient or more kind, though that may be true. It’s not just that she has taught me things because there are challenges in having a condition like Down syndrome. When I say she has taught me things I mean that she is actually a role model to me in many ways.”
She doesn’t teach me simply by what she requires me to give her. She teaches me by what she gives me. She teaches me by who she is, not just by who she calls me to be.


Wednesday, January 10, 2018

I’ve listened to Father Greg Boyle speak a few different times, but I only recently read his books, Tattoos on the Heart and Barking to the Choir (link in comments below). Boyle is the founder of Homeboy Industries. He lives in Los Angeles in a neighborhood with lots of gang activity. Boyle himself is an older white man. He compares himself to Santa Claus in appearance. Most of the “homies” (their term) he works with are Latino or African American men and women with multiple tattoos designating their gang affiliation. In other words, at least as far as appearance goes, “G” (as he is affectionately known) looks very different from the homies.

But story after story after story demonstrates not only the love that G has for the homies, and they for him, but story after story after story also demonstrates the connection that these men have with one another.

Still, I was surprised as I was reading at how much these books resonated with me. My life could not be farther from this neighborhood in Los Angeles as far as education, socio-economic status, or race and ethnicity. But I found myself nodding my head again and again. On the one hand, Boyle is a great storyteller, and he deserves some credit for drawing me in. But I was also drawn to these stories because of the truth they contain, the truth not just about former gang members on the streets of LA, but the truth they contain about me and about every other human being, the truth that we are all longing to be accepted, to have purpose and friendship, to be known and received and loved.

In Barking to the Choir, Boyle tells the story of Andres, a boy “abandoned by his mother when he was nine years old…” Andres tells G a story: “I see an old man lying on a bench. There’s a half-full forty on the ground in front of him and the old guy, well, he’s shiverin’ cuz it’s cold. So you know my favorite sweater? Well I was wearin’ it and I took it off and I laid it over this guy. He didn’t wake or notice.” Boyle writes, “For a moment, Andres enters a sort of trance. And then suddenly he’s shaken from it. “Hey. I’m not tellin’ ya all this so you think I’m AAALLL that. Nah, I’m telling ya all this cuz I know that bench. I been on that bench.”

When we start to see ourselves not only as the people who are willing to give our favorite sweater to the guy on the bench, but as the people who have been on the bench and give the sweater not out of pride but out of humility, not out of superiority but out of solidarity, then we start to tap into the love that fuels the universe, the love that created us all.


Thursday, January 11, 2018

Have you ever struggled with how much of your family story you should tell your kids? Or how much of the hard, ugly side of American history? Or how much of the horrible things that come up on the nightly news?

I’ve wrestled with these questions for years now–how do I protect my kids in an appropriate way and yet also introduce them to the truth that the world we live in is marked by both brokenness and beauty?

I wrote about it for Christianity Today, using the Little House on the Prairie books as a launchpad. (I’m pasting the link in the comments section.) I would love to hear how you handle telling the truth to kids or how your parents handled it with you.


Friday, January 12, 2018

I posted this trailer for the film our family will be in which examines the idea of being “normal” through the lens of Down syndrome. Here it is again for those of you who didn’t get to enjoy it the first time. You can learn more at www.normiefilm.com