Belabored Chapter 48: Emma

 “Babies are the future… What could be more compelling than a baby?” – N. Scott Adzick, M.D.,

Director of Center for Fetal Diagnosis and Treatment, Children’s Hospital of Philadelphia

           Pain. I expected it after the C-section, but there’s pain and then there’s pain.

The nurse comes in and says they’ll be removing the catheter soon, so at least I’ll be able to feel my legs again. Then I can get up and go to the bathroom myself and maybe feel a little bit like a grownup again. Maybe they’ll give me some real food, too, instead of all this liquid garbage. I know they have to let my stomach rest after the surgery, but this is getting old.

 I can’t stand having the flu, let alone this feeling of helplessness.

            The doctor's been in. He says they’re optimistic that the baby’s first surgery will go well. They have to do spinal surgery and put in a shunt, so the fluid won’t build up around his brain. I’ve read that shunts fail and have to be replaced every so often. More to look forward to.

            With everything that’s going on, it’s just as well he’s not nursing. Let the poor thing deal with healing instead of trying to learn how to latch on and all that stuff. Plus, I can have stronger painkillers since I’m not breastfeeding. Does leave me feeling full and sore, though, until I dry up. Can’t come soon enough.

           Tom comes in with Kyle. They wheel me and my bag full of pee down to the hallway outside the neonatal intensive care unit to see Matthew. He looks so vulnerable with all the equipment he’s hooked up to, poor baby. What a way to start life. 

A chatty nurse who’s just coming on duty pauses in the hall to talk to us.

“Oh, hi, Mrs. Coughlin! And you must be Mr. Coughlin! I’m Katie, I was Matt’s nurse last night. There’s your little boy. He’s a real cutie. We’re all in love with him.”

I try to come up with a smile, but feel my mouth settle into a contorted frown.

I can’t take my eyes off the size of Matthew’s head. Although covered with a blue cap, it’s noticeably larger than Kyle and Kevin’s were when they were first born.

I’m afraid to imagine what his back looks like. If I saw it last night, the anesthesia must have blocked it out. The pictures I found online of spina bifida were gruesome and frightening. 

            There’s a bank of windows in the rear part of the NICU, which are visible from the hall. I force my eyes off of Matt and onto a fluffy clump of cotton-ish clouds nestled between otherwise dark, thundery ones. The sun can’t decide whether to break through or hide.

Kyle’s excited and doesn’t understand why he can’t touch, feel, experience the baby. Tom lifts him up to the nursery window and guides his plump, mischievous hands to the glass.

“There’ll be time for real touching later, Ky. For now, we look at him this way. And when he gets home, you gotta be careful, Bud,” Tom explains. “He’s real small, even smaller than Kev, and he’s very delicate.”

“What’s ‘delicate’?” Kyle wonders.

“That means he’s not strong yet. He’s not a playmate yet.”

He looks at me.

“But someday he’ll be both those things. We just gotta wait awhile.”

I look away from Tom’s hopeful eyes.

 “Hi, Maffew,” Kyle coos. The baby’s eyes remain closed, but a fleeting smile crosses his lips.

Probably gas. 

Then he rouses with a gentle cry.

            “OK, time for us to go, big guy,” Tom says to Kyle. “Mama’s tired and the nurses have to take care of Matt. He’s cryin’ ’cause he needs something.”

            “I wanna feed Maffew!” cries Kyle.

            “No, Kyle, the nurses have to do that. For now, at least.”

            Turning to me, he adds, “I’m gonna bring Kev in next, after I drop this one home with Linda and Ted. Didn’t wanna overwhelm you. Sound good, Sweetie?”

            He really is a dear man. And he’s trying so hard. I give him a weak smile.

            “Sounds good. See ya soon.”

            Tom kisses me on the cheek and wheels me back to my room. I give Kyle a squeeze and tell him I’ll see him soon.

 After they leave, I return to my private anguish.

***

            When I sneeze, it feels like a whole gymnastics squad is doing somersaults on top of my incision. I groan. With my stomach muscles clenched, the pain gets worse; I make a mental note to hold in any future sneezes, or die trying.

            My roommate hears my agony and offers comfort.

            “Hey, is there anything I can do? I couldn’t help overhearing. Want me to call for the nurse?”

            Talking isn’t on my top ten list of activities at the moment, but I don’t want to be rude.

            “That’s OK. She’ll be in soon enough. Thanks.”

            My neighbor is undeterred by my brevity.

            “I’m Margaret Clauser. I guess we’re stuck in here together for the foreseeable future!”

            Oh, no. She wants to make friends, or at the very least, chat. I’m in no mood for banter.

            “Emma Coughlin,” I offer with what little enthusiasm I can summon.

            “Boy or girl?” she asks.

            “Boy. You?”

            “I have a beautiful little girl. Her name’s Serena. That means ‘serene,’ just like it sounds. And she really is. She’s just a joy. What’s your son’s name?”

            “Matthew.”

            “I love that name. What does it mean? Did you look it up?”

            “Yeah. It means ‘gift of God.’”

            “Oh, wow. To me, every baby is a gift of God, don’t you think?”

            This is the wrong time to ask. Between incision pain and the conflicting emotions swirling around inside me, I can’t make that call.

            “Uh huh,” I mutter.

            “Do you have any other children?” she probes. This woman isn’t going to let up.

            “Yeah. Two boys. You?”

            “Serena’s our first. We’ve been trying for a long time. Hopefully we’ll be able to give her a brother or sister in the future.”

            “I’m sure you will,” I reply out of politeness rather than interest.

            “What are your other kids’ names? I love discussing names, don’t you?”

            No. No, I don’t, not at this moment. At this moment, what I want and need is rest and time to myself. Since I can’t have either, I give in to self-pity. An involuntary tear rolls down my cheek. It’s not lost on Margaret.

            “Oh, Emma, have I upset you? You’re crying!” my new BFF exclaims. She gives new meaning to the word “relentless.”

            “No, I’m fine. Just a little emotional, I guess.”

            “I know what you mean. We’ve waited so long – three years – and she’s finally here!”

            Just then a dark-haired man with glasses pushes open the door. He comes in quietly carrying a large bouquet, which he sets down on Margaret’s nightstand. He bends down and kisses her, then asks, “How are you, Hon?”

            “Roger! They’re beautiful!” she cries, throwing her arms around his neck. “You shouldn’t have! But I’m glad you did!”

            She remembers her manners and introduces me.

            “Oh, Emma, this is my husband, Roger. Roger, this is Emma.”

            I drag myself away from my pity party long enough to say, “Hello."

            “Oh, hey,” he replies, then turns back to his wife. Lowering his voice, he says, “Margie, they wanna know if you wanna see her.”

            “Of course, I want to see her! What a question! It’s probably time to feed her! Poor baby’s probably starving! Tell them to bring her right in!”

            Roger takes on a deer-in-the-headlights look. He touches his wife’s hand.

            “Margie,” he begins, “Honey, don’t you remember?”

            “Remember? Of course, I remember! I remember that I have a blonde-haired little girl who’s ready to gobble up some of this milk that’s making me so top-heavy! Come on, let’s get her in here!”

            “Honey, don’t you remember what the doctor told us? Don’t you remember about Serena?”

            “Roger Clauser, you’d better stop all this silliness! Bring my daughter in here now! I need to feed her!”

            All of a sudden, Roger seems to remember he has an audience. I’m not trying to overhear, but these hospital rooms aren’t exactly spacious.         

            “Listen, I don’t mean to be rude, but would you mind if I pulled the curtain?” he asks apologetically. “I need to talk to my wife alone. You understand.”

            “Oh, sure,” I fumble. “Of course. No problem.”

            It doesn’t make much difference. I can still hear everything, despite how hard I try not to.

            “Margie, Honey, remember what’s going on? Do you remember about Serena, Sweetheart?”

            “Roger, what are you talking about? Where’s my baby? I want to see her!”

            “And you will, Sweetheart, but not the way you expect to. Oh, God, why does this have to be so hard? Margie, please try to remember!”

            Suddenly, Margaret lets loose with a hair-raising scream, followed by the sound of loud sobs. I can hear Roger soothing her, telling her it’ll be alright. His voice has a catch in it.

            After a while the crying subsides, and Roger says, “OK, Honey, do you think you’re ready to see her now? It’s OK if you’re not.”

            Margaret mumbles something unintelligible. A few minutes later I hear footsteps, followed by hushed voices. From the sound of things, more than one person has come in. Someone must have brought in her baby, because I hear Margaret singing in a broken voice. It’s a lullaby, but not one I know:

Sleep sound in Jesus my baby, my dear,
Angels are watching, they keep you so near;
Know for His sake you'll be safe for the night,
Sleep sound in Jesus, I'll turn out the light.

Sleep sound in Jesus, sweetheart of my heart,
The dark of the night will not keep us apart;
When I lay you down in your bed for the night,
He holds you gently till morning is light.

Sleep sound in Jesus, the angels are here,
They're keeping watch so there's nothing to fear;
Against any foe they are ready to fight,
So sleep sound in Jesus, I'll turn out the light.

Sleep sound in Jesus my baby, my dear,
Angels are watching, they keep you so near;
Know for His sake you'll be safe for the night,
Sleep sound in Jesus, I'll turn out the light.*

            After Margaret finishes singing, I hear the voice of a different woman, someone with rehearsed but sincere sounding sympathy.

            “OK, Sweetie, what would be good now? Would you like to take some pictures so you can remember her? Would that be good?”

            A muffled answer comes from Margaret. Then her husband’s voice: “I think we should, Margie. It’ll be good, y’know, later.”

            The sound of cell phones snapping photographs.

            All in all, I guess the people stay for about an hour. Margaret cries on and off, and different voices chime in to comfort her.

            I feel like an intruder.

***

            It’s about 9:00 and our room is silent. Tom and Kev have come and gone. How I wish I had thought to tell him to hold off. The last thing Margaret needs is toddler noises. Thankfully, Kevin was fussy, and Tom took him home early.

            This time I’m the one who initiates conversation.

“Margaret, um, are you OK?”

No answer.

“Margaret, um, Margie, I’m sorry about the noise earlier. I hope it didn’t disturb you.”

After a pause, she answers, “No, that was fine. You have a nice family.”

“Thanks. So do you.”

Am I going to leave it like that, with unspoken knowledge hanging between us like rotting fruit?

I have no obligation to this woman. I’m not a grief counselor or a therapist. I’m not even really in my own right mind, I’m pretty sure, what with all that’s going on. Still, you don’t just gape at the scene of a car wreck without at least offering a blanket. I screw up my courage and every ounce of caring I have for someone other than myself.

“Margie, do ya wanna talk about it?”

No answer.

I forge ahead, praying these are the right words.

“You were so sweet to me earlier. I wasn’t very talkative then. I’m sorry. But people do tell me I’m a good listener when I’m not in raging pain!”

Nothing.

“Well, listen, I’m here if you need me.”

Something I said must’ve gotten to her because after a few minutes she starts telling me some of what she and Roger are going through. The voice I heard earlier asking about taking pictures was one of the perinatal hospice nurses. They had been preparing her and Roger for this. 

That lullaby was the first and last song she would ever sing to her daughter – both a welcome and a farewell.

Margaret has a sweetness about her that draws me out. I find myself telling her about Matthew’s problems. They sound small, compared to what’s on her plate.

It’s only a matter of time before we cry together.

Two mothers, both aching, for different reasons.

“Oh, Emma, I’m so sorry you have so much to deal with!” she says, as if she’s not stuck at the other end of the grotesque continuum some heartless power dumped us on.

Emma, you don’t really believe that. Where’s your faith in God?

It’s still here, flickering. But it’s being sorely tested.

“Oh, listen, me too, but, hey, look what you’re going through! I feel so terrible about how abrupt I was earlier. If I had only known –”

“Emma, let’s don’t go there. You didn’t know. You were trying to take care of yourself, your pain.”

I can’t believe I felt so irritated with this dear woman a few hours ago. This is like rooming with Mother Teresa or Corrie ten Boom.

I decide to take a risk.

“Margaret – wait, do you prefer Margie?”

“It doesn’t matter. Roger calls me that. He thinks it’s softer. Most other people call me Margaret.”

“OK, I’ll go with Margie, if that’s OK. He’s right, it does have a softness about it. Margie, how long have you known? I mean, when did you find out about, y’know? I mean, if it’s not too hard to talk about.”

She dabs at tears and blows her nose. She’s one of those loud blowers, which surprises me. I almost laugh at the irony of this slight little woman letting out a noise like a foghorn. I force myself to refrain.

Laughing would probably hurt too much anyway.

“No, it’s OK. I don’t mind. Maybe I should. The first ultrasound showed serious problems. They tried to get me – us – to abort. They used a lot of euphemisms, but I knew what they were talking about.”

I nod. I know those euphemisms.

“Rog and I talked and prayed about it. We decided God had sent this baby to us, and only God was allowed to take her away. We prayed and prayed that she’d be OK.

"Then, when she stopped moving at 29 weeks, I prayed to feel something. Anything. Just to know she was, y’know, OK. A couple times I thought I felt something, but it wasn’t the same. It wasn’t – right.

“Sure enough, when I went in to be checked, they said all they could get was an ‘agonized heartbeat.’ They said it wouldn’t be long. After a while, there was nothing. They delivered her and – and –”

Loud, wrenching sobs rock her small frame. I wish I could get up to hold her, but my own pain is breaking through. Where’s the nurse with our medication!

“Oh, Margie, I’m so sorry!” is the best I can muster. For some stupid reason, I feel compelled to add, “My arms are around you!”

Why did I say that? It’s a ridiculous phrase my mother uses because we live so far apart. We rarely get to hug in person.

I wish Mom could be with me now. I wish Dad didn’t need her so much. I wish…

Who knows when I’ll get to see my parents again? Between Dad’s dementia and Matthew’s problems, neither of us is in any position to travel.

This is no good, Emma. Keep your mind where your feet are.

Right now, your feet happen to be propped up in a hospital bed that feels like a rack.

That’s your reality, girl. So be it.

I feel the tears starting to come again. I stifle them by making a follow-up joke.

“I mean, my arms would be around you if I could get out of this stupid bed without my whole body screaming in agony! Oh, curse pain anyway!”

She laughs at that. I laugh with her, in spite of the torment it wreaks in my poor body.

No, Emma. Don’t laugh in spite of it. Laugh to spite it!

Her next words catch me off guard.

“Emma, would you like to come to Serena’s funeral?”

I sit there like an idiot, trying to think of something to say. My silence must have answered her question.

“Oh, what was I thinking? You have two little boys at home and a sick baby who needs you!” she says through tears.

I find my voice and my conscience.

“Of course, I’ll come!” I blurt out. “Of course, I will, Margie!”

“No, Emma. Your place is with the living,” she says without any rancor. “But, listen, I do hope you’ll do me one favor. As you’re raising Matthew, I want you to think of me and Rog. Maybe you’ll pray for us.

“And think of the gift you’ve been given, even though that gift is gonna take a lot of maintenance. Thumb your nose at the people who told you – told both of us – that our children’s lives wouldn’t be worth living. Think of other lives that didn’t measure up to society’s standards. Joni Eareckson – oh, what’s her married name? Anyway, have you heard of her?”

I haven’t.

“She’s a quadriplegic. Lost all her mobility, arms and legs both, in a diving accident as a teenager. Tada, that’s her name, Joni Eareckson Tada. Y’know what she does now? She writes books and paints with her mouth! Her mouth, Emma! Holds the brush with her teeth! Some of the most gorgeous artwork you ever saw! Runs an organization called 'Joni and Friends' to help families cope with disability. She’s received awards and degrees for all the work she’s done from a wheelchair!”

She pauses to let that sink in.

“Then there’s Andrea Bocelli, the blind singer. Even I like him, and I’m not a fan of his type of music! Did you know his mom was advised to abort him back in the day? What if she had?”

Another pause.

“And don’t forget Helen Keller. She couldn’t see or hear – it took her years just to learn to talk so people could understand her! Still, she graduated with honors from Radcliffe, and then wrote books and gave lectures about disability.”

I feel compelled to add something to Margie’s monologue.

“Yes. Yeah, I know. They’re all amazing people.”

She stares at me.

“Emma, they’re more than amazing. They’re God’s vessels. What do they all have in common?”

I’m not sure if it’s a rhetorical question or if I’m supposed to answer. I wait and, sure enough, she goes on.

“They all have a voice, Emma! Whether it’s slurred speeches, or songs, or a paintbrush clenched between teeth, they all raise their voices and say, ‘We’re here! We exist and have something the world desperately needs! Don’t you see, Emma?”

Where’s the nurse with my pain meds? Where’s Tom when I need him to come strolling in?

As if she can read my mind, Margie blurts out, “Emma, I know you’re in pain, but look at me! Look at my smile!”

The ferocity of her ludicrous command startles me. I obey. For the first time, I notice a demure little overbite, almost cute.

I guess my face must register, “So what?” because she continues with fierce determination.

“See that, Emma? See that overbite? I always wanted to have that corrected, but my parents didn’t have money for braces. So, I live with it.

“It messes up the way I eat a hamburger. I always eat the bun unevenly. There’s always more of the bottom roll left when I get to the last bite – it’s ridiculous!”

What is she talking about?

“So, it makes me a little different than the 30 million people in the world with perfect smiles, but I don’t feel any less full than they do when I eat a burger.

“Don’t you see, Emma? My silly mouth gets the job done. It might look funny to some people, but at the end of the day, I’m still nourished and able to go about my business.”

“Margie, you have a very nice smile, regardless of the –”

“Emma, I’m not talking about my overbite! I’m talking about life! I’m talking about messiness and inconvenience, which is what life is, and even more so when you add disability to the mix! Welcome to the world! Welcome to life in an imperfect, upside down world!

“We’d all be a lot better off if we learned to live with the beauty of imperfection! I can’t change the craziness of life and neither can you by choosing to raise your imperfect, upside down child, but will you do the best you can with what you’ve got? Will you give Matthew all you’ve got?”

Big, wet tears roll down her cheeks and onto her blue hospital gown. Her nose is running again, but this time she doesn’t bother to blow it.

“Look, Emma, I’m just gonna say one more thing and then I’ll shut up. Lord knows, we both need rest and painkillers.

“I can’t promise you anything except that, for right now, your son is alive. He has a chance. Whether he’s productive for society depends on his innate abilities and how you raise him. What I can promise is that when you walk into eternity, you’ll be able to say, ‘I did the best I could with what I was given.’ What do you say, Emma? Is that enough for you?”

*Title track from Sleep Sound in Jesus Deluxe Edition, 1989 by Michael Card. Used with permission.