We lean over the pack-n-play travel crib in a dark room at their grandfather’s house. August is a newly minted seven year old whose past two weeks have been filled with swimsuits and slabs of sunscreen. We’re on an extended trip to the east coast, where the sun shines hot in the summer and grandparents and aunts and uncles seem to be waiting in every town in the mid-Atlantic states.
It’s afternoon. He’s followed me and Ace into my room where the crib is. He wants to help. I swaddle his baby brother and he sings with me a silly lullaby, the same one he sings to Ace when he cries in the car.
“Mom,” he whispers. “I want you to pray for Ace.”
“Okay.” I lay his brother down inside the crib. “What do you want me to pray for?”
August, who faces scary dreams on a regular basis, asks first that I pray that Ace won’t dream at all. (“I don’t want him to have a bad dream. And if it’s a good dream, then he might be sad it isn’t real.”)
And then he adds, “And pray for his Down syndrome.”
“What should I pray about his Down syndrome, buddy?”
“Pray that it won’t hurt him.”
When Ace was born 12 weeks ago, Chris and I weren’t sure how to tell our boys about Down syndrome. They’d never known anyone with DS. How could they understand what it would mean for their baby brother, what it would mean for their lives? When we were given Ace’s prenatal diagnosis I wept first for them, for the responsibilities they’d have to hold, for the challenges they had never asked for. How would it feel to hear some kid in their class make fun of their little brother? Which of them would feel pressure to care for their brother when Chris and I one day can’t?
We’d been reading a book lately. So when I told the older boys about Ace’s diagnosis, when I took the book’s advice and described DS as being something that would make Ace really good at some things (most flexible member of our family!) and in need of help in other things (“Crawling and walking might be harder, but we’ll cheer him on and help him learn”), the boys weren’t afraid at all.
In those early weeks, when other parents at August’s school would ask about how Ace was doing as I walked my first grader into class, August would tug on my sleeve (“Mom, tell them about the Down Sin Drum!”), excited. Something was wonderful and important about his brother.
We haven’t faced the hardest things yet. Ace was born with a healthy heart. When he was 10 days old I held his six-pound body as cardiologists strapped electrodes to his tiny chest. I sat beside him and stared at the screen while the fluttering tree of his heart’s chambers swayed from side to side. Such beauty inside him. A heart that worked.
When August asks me to pray for Ace’s Down syndrome, I think first about how grateful I am for that healthy heart. Then I think about the blood tests Ace will have every six months. It's the possibility of blood diseases that keeps me up at night.
Then I think about how it will feel to watch my friends’ babies develop typically, while my Ace struggles to sit up, or crawl, or say his first words. I worry that Ace’s speech will be difficult for the world to understand.
I think about how much I love words, how I want Ace to be able to read books and write his own stories. I think about how gentle and loving he already is, and how afraid I am that despite all the love he has to give, the world will fail to love him back.
Pray that his Down syndrome won’t hurt him, my oldest son says.
There is so much we ask in so few words, Lord. Such depth to this prayer.
My seven year old leans over the crib and says, “Have a good nap, sweet baby.” And I take a deep breath. So many deep breaths lately. So much weight for so small a life.
That it won’t hurt him. We pray that it won’t hurt him.