Chapter 21
Chapter twenty-one
It’s the day after our daughter’s birth, and I’m existing in a weird limbo of sorrow and hope, grief and joy.
I feel like we’ve stumbled into someone else’s life, a dream that we could still wake up from, and at the same time, it’s hard to remember when we weren’t living this way.
When we still believed our daughter was perfectly healthy.
When Josh told me, I simply stared at him. “What… no…”
He nodded somberly. “There were some clear markers. Obviously, they need to do some tests to confirm, but she had an extra fold on her eyelid, her features are a little flat, her limbs floppy…”
“Don’t talk about her like that,” I cried.
Josh hung his head. “I’m sorry, I’m just… I’m just trying to approach this as… as reasonably as I can.” He rubbed a shaky hand over his face as I shook my head.
Nothing about this felt reasonable. Down Syndrome.
Did I know anyone with children with Down Syndrome?
Only vaguely. I knew the generalities, the stereotypes—happy, affectionate personalities, short stature, heart defects.
That about summed up my entire knowledge, and I didn’t even know if it was accurate.
It felt like so little, like no person or condition should be condensed into a couple of pithy sentences, defined by the health of their heart or their height or what their eyes looked like.
And floppy limbs? All babies were floppy. Flat features? Wasn’t that a matter of opinion?
“Can you bring her back in?” I whispered.
He nodded, tears starting in his eyes. “Yes, of course.”
He went to get the nurse, and she brought her a few minutes later. I held out my arms, and she smiled at me as she placed my daughter in them.
I looked down into my baby’s face, studying her perfect features—the rosebud mouth, the button nose, those deep blue eyes. I saw the extra fold, and I saw how her nose looked a little flattened. When I unwrapped her swaddled blanket, I saw how her limbs became loosely splayed.
I swallowed hard. They might need to do tests, but the evidence was right in front of me, and I didn’t know how to feel about it. Anything but complete joy and thankfulness felt so wrong right now. I did not want to grieve any part of my daughter’s birth, my daughter’s person.
Yet I was fighting back tears just as Josh was, and they weren’t happy ones.
How much did this change things? What did this mean for our daughter, for our other children, for our lives?
Would there be endless medical appointments?
Would our daughter be able to live independently one day?
Would people accept and love her? Would I?
The questions kept hammering through me, and I closed my eyes, willing them away. I knew I could not handle thinking about the next twenty years when the next twenty minutes felt hard enough. They felt impossible.
I looked up at Josh. “She’s still beautiful,” I said fiercely.
He nodded as a tear slid down his cheek. “Yes,” he agreed hoarsely. “She is.”
Since then, there have been tests—a blood test called a chromosomal karyotype, the results available in one to two weeks.
She’s had an echocardiogram to check for heart defects, and thankfully, none are present.
Her vision and hearing have been tested, too, and they seem okay, and she’s nursed like a champ, which the nurse told me was impressive because, due to their low muscle tone, many babies with Down Syndrome don’t nurse very well.
We’ve been given brochures, website addresses, and phone numbers for the leaders of local support groups.
We’ve talked about next steps, with more frequent pediatric checks.
Eventually, our daughter will need physical, speech, and occupational therapy, but for now, the pediatrician told us, she’s pretty much like any other baby.
It’s all been overwhelming, as though this huge mountain has suddenly plopped itself in the middle of our lives. I can’t see over or around it; I can’t see anything but it. Everything else has faded into complete insignificance.
Of course, we had to tell the kids. Josh told them on the phone while I listened in, our daughter in my arms. There was stunned silence, then halting questions, and then Rose’s plaintive voice, loud enough for me to hear.
“But when can we see her?”
They’re coming, all four of them, in a few minutes.
My dad is manning the home front; I know he’ll be nothing but completely and lovingly accepting of this little one.
I’m excited and anxious all at once. I don’t know how the kids are going to react, and I don’t know how I’m supposed to be.
I want to be excited, overjoyed, but there’s this weight pressing down on my chest, and I can’t shift it.
I can’t pretend it’s not there, but I feel like I’m supposed to.
“Okay, guys.” Josh’s voice is pitched too jolly, like it’s Christmas, as he opens the door and ushers everyone in.
I see the uncertainty on my children’s faces—William looks stoic, Bethany anxious, Rose interested, and Jack a little sullen, which is his way of hiding his fear.
My heart fills with love for them all so much it hurts.
“Hey,” I say softly, then have to clear my throat.
“Here she is.” I step aside so they can see her lying in the bassinet, her hands curled into fists by her face, a pink and blue striped cap on her head, her body swaddled tightly in a white blanket.
Her tongue is sticking out a little, another classic sign, but I think it just looks cute.
I have no idea what my children think as they look down at their little sister.
“She’s cute,” Jack finally says, then looks up at me with an uncertain smile.
I have to blink back tears. “She is,” I agree, and clear my throat again.
“She’s really cute,” Bethany says firmly, then takes a step toward me. “Are you okay, Mom?” Her voice is so gentle that the tears spill over.
“I am okay,” I assure all my kids as I wipe my cheeks.
I know there is nothing more alarming for a child than having a parent break down in tears.
“Sorry,” I say as I wipe my cheeks again.
“I’m feeling a little emotional. It’s been a lot, but…
I’m happy. And she’s so beautiful.” My voice cracks, and Bethany puts her arms around me.
As I hug her back, William puts his arms around us both, then Jack and Rose get in on the action, and finally Josh spreads his arms wide to cover us all. I can’t remember the last time we had a group hug; maybe when my mom died. We cling to each other now, holding each other up.
I am so grateful for every single one of my children, for their love and kindness and support, and most of all their simple acceptance of their sister. When we break apart, everybody is sniffing and wiping their eyes.
“So, what does this mean?” William asks, ever practical. “Will she need special care?”
“Eventually,” I reply. “More trips to the pediatrician to check on developmental milestones, then some therapies when she starts walking, talking, all that kind of thing.”
I gaze down at my sleeping daughter. What does the future hold for her? How will the world treat her? What obstacles and challenges will she face, what joys will she know? I remember asking myself these questions when my other children were born, yet this time, it all feels so much more precarious.
But maybe all of life is fragile… it’s just at certain times we feel it. We know it.
“So, does she have a name?” Bethany asks practically.
Josh and I exchange glances. We still haven’t talked about names, but I have one in mind.
“Well, I had a name I’ve been thinking about,” Josh ventures cautiously with another questioning glance at me. I nod encouragingly, and he continues, “I was thinking of the name Faith.”
I can’t help but gasp. “That was the name I’ve been thinking about, too.”
Bethany laughs. “Sounds like we have a name,” she says and leans down toward the bassinet. “Hello, Faith.”
Faith. It feels right, because sometimes faith, both flimsy and firm like Pastor Todd said, is all we have.