The Day Kennedy Areffi was Born

The Day Kennedy Areffi was Born – June 12th, 2002.  Four years later, she was diagnosed with autism.  This is the story of how she came into this world.

It was June. It was always cold in June, I remember thinking, groaning when the Jeep slammed back down to earth after it struck a dip in the road, going 60.

“Please, not so rough. It hurts, ” I begged weakly to my husband, Andy. He ignored my plea, gunning the engine faster. Another wave of pain hit me, making me scream in agony, while sobbing at the same time.

“Get out of the way!” he screamed at a slow moving car that pulled out in front of us. He laid on the horn with an angry blast and swerved around the offending vehicle, with a few choice words hurled at the driver. He laid his hand on my arm, stroking me gently, trying to soothe me without turning to look at me. “Don’t worry, Mel.  It’s going to be all right, sweetheart,” he told me while running a red light. He turned the wheel suddenly, and the car gave a violent lurch over the curb onto the sidewalk.  I couldn’t blame him for driving like an asshole.  I wasn’t due for another three months. We both knew something was horribly wrong.

He slammed on the brakes, threw it in ‘park,’ and hopped out of the still running car. I could dimly hear him screaming something at the people standing outside, but I just closed my eyes in surrender, in too much pain to care. My door flung open and hands grabbed me, trying to yank me out, although I was still wearing a seat belt.  “Shit!,” Andy swore as he unlatched my seat belt. The medics unceremoniously dumped me into the waiting wheelchair, and tore back through the Emergency waiting room, going straight through the double doors. Andy chased after us, our running car forgotten on the sidewalk.

Good God, why the hell do women ever have more than one, if this is what labor feels like?

Florescent lights flashed by overhead with a strobe-like effect. I grabbed my abdomen again, yelling like a banshee.  I was pretty sure I peed my pants, but was so drenched in sweat I couldn’t tell the difference, anyway.  Andy jogged alongside me, holding my hand, which I was squeezing so hard his wedding ring cut into his fingers. Overhead, I could hear the hospital PA system.

“Dr. Maxwell to Labor and Delivery, STAT. Dr. Collings to Labor and Delivery, STAT,” the disembodied voice announced, echoing down the halls.

They wheeled me into a large birthing/surgery suite, and hoisted me onto a gurney.  Suddenly, it seemed like the room was full of dozens of people, all clad in green scrubs, and all pulling, prodding or poking me. They had to work around Andy, since I refused to let go of his hand.  Monitors started beeping in a frantic pace as they hooked up my and the baby’s heart rates. A nurse with a clipboard fired questions at me.

“How far along are you?” she asked.

“I want drugs! God, give me morphine!” I hollered.

“We don’t know what’s wrong yet, Mrs. Areffi…” she began.

“I’m in fucking pain! That’s what’s wrong! Oh, God, NOOO!” I screamed. Andy started yelling at the nurses to help me and give me something for the pain over my screams.

“Who is your OB?” she asked.

“What? I’m not having the baby yet. It’s too soon. I’m due in August!” I shouted. “What the hell’s the matter with you people?”

She repeated the question. I couldn’t answer her, since I was now calling the technician a bastard, blaming him for all this.  I was so frightened, it royally pissed me off, and everyone in the room (and maybe the floor), knew it.  Andy had to answer her questions for me.

“Her OB is Dr. Anthony, but he’s not at this hospital, he’s out of Cedar’s. He told me to get her to the nearest ER when we called him,” Andy told her flatly, as if he was in shock.

I turned to look at Andy. “I’m dying. God, I’m dying. Please don’t let our little girl die,” I cried.  He slapped me. Hard. I was shocked. Andy had never so much as pinched me in anger.
“Goddamn it, Melissa! Don’t you even fucking talk like that! You will not!” he screamed, the terror in his eyes mirroring my own.

He grabbed my shoulders, shook me roughly, then enveloped me in a suffocating hug and rocked me gently, as if he could physically stop the unthinkable from happening by sheer will.  We held onto each other like a lifeline.

“I love you, Andy,” I said with quiet conviction.

“I love you, too, Melissa. Please don’t leave me,” he said softly.  “I don’t want to lose you. You’re my sun, my moon…”

“…My starlit sky,” I continued. “Without you, I’d dwell in darkness.” I tightened my grip as the white-hot pain gathered again. He tensed and shuddered in anguish, as if physically experiencing it himself.

“Mr. Areffi, we need you to move out of the way,” one of the nurses said as she forcefully maneuvered him into a chair next to the wall.  A shrill alarm from the monitors sounded. A high pitched ringing sounded in my ears, drowning out the flurry of activity as the doctors appeared, prepped for surgery.  Everyone was talking at once, so it all seemed like one long, disjointed speech.

“Get that drip going, STAT! We need 15 cc’s of…”

“BP is 250 over 140 and rising…”

“Baby’s heart rate in distress…”

“Get that on there! She’s going to stroke out…!”

“Adrenal functions failing…”

“Prep for emergency C-section…”

“Placenta abrupting, set up for blood transfusion…”

“Have the NICU and Dr. Black in neonatology standing by…”

I could dimly hear Andy talking on the phone, telling his parents to come right away.  I felt him take my hand, and I held on desperately, focusing on his litany of “I love you.”  Then the blackness took me.

The fog lifted as I opened my eyes in the darkened room. What the hell happened? Where’s Andy?  “Andy?” I called out.

“We made him go home to get a little rest when his parents arrived,” a voice answered. I could make out a blur at the foot of the bed – the nurse with the clipboard.

“What? When? I want to see him. What about my baby? Where is she?” I tried to sit up, looking around for them in the room.

She got up and gently held me down.  “Easy. You need to rest and absolutely no stimulation to your blood pressure. Your daughter is fine, she’s in the Neo-natal Intensive Care Unit, though. My name is Mary. I’m right here if you need anything.” She sat down in a chair stationed at the foot of my bed.  Good God, how bad off was I that I had a nurse pretty much sitting on my feet?  “Don’t I get to see her? Are you sure she’s all right? I want to see my baby,” I pleaded.

Mary smiled a little.  “She’s beautiful, Mrs. Areffi, and doing well.  You’re still too delicate for us to take you to see her just yet, I’ll call up there and see if they can take a Polaroid of her to send down so you can see her.”

A few minutes, a few hours, later, perhaps, since I had lost all track of time in the darkened room, someone arrived with a picture of my baby girl.  I studied it, feeling somewhat detached and impersonal.  Was this my little girl? It felt so strange to lie there holding a snapshot of a baby I’d never seen, being told she was mine.  Written in the margin were the words, ‘Baby Girl Areffi, 2 pounds, 2 ounces.’  It was awful – she didn’t even have a name.  Andy came in as I was holding the picture. He looked as bad as I think I must have. He saw the look on my face, came over and sat on the bed, and just held me while I cried, waiting until I was done.

“You’re beautiful, sweetheart,” he told me, stroking my hair. I snorted.

“Now I know love is blind. It’s not that dark in here,” I retorted.

“She’s beautiful. She looks just like you,” he told me. “I saw her before they took her away in an incubator and heard her screaming.  Definitely her mother’s daughter.”

I pinched him for the last remark, then snuggled next to him and fell back asleep. Andy told me later that I had been in the birthing surgery room for over two days; because my blood pressure had been so critical, they were afraid I would have either seizures or stroke.

The next time I woke up, I was in another room, and it was daytime.  A nurse walked in, carrying a tray of food.

“Here’s your lunch,” she said, putting the tray down on the rolling table.  “After you’re done eating, press the call button, and we’ll send someone with a chair to take you to visit your daughter.”

I looked at my lunch.  Somehow, I didn’t think it qualified as food.  I was hurriedly finishing when Andy came in with a wheelchair.

“Ready?” he asked, smiling.

“Absolutely!” I answered as he helped me in the chair.  He wheeled me down the hall. The newborn nursery came into view and I eagerly leaned forward, searching each baby.

“Which one is she?” I asked. Andy kept going, passing the nursery.  “Andy, where are you going? Our baby’s back there!” I motioned behind us to the diminishing sea of pink and blue caps, teddy bears, and over-excited relations cooing to the glass. He placed his hand gently on my shoulder and rubbed softly, as if it would stave off the tight ball of trepidation that settled on my chest like a lead weight of denial.

We stopped directly in front of two large security doors. There was no sea of fuzzy caps or new teddy bears. No windows. No families. Just a small security call box and a large red sign stating, “Please call Nurse for Admittance” and underneath it was listed the policies and visiting hours of the Neo Natal Intensive Care Unit. Dear God, it looks like a prison, I thought. I looked up at Andy and blankly shook my head at him. He leaned down and kissed me gently.

“Mel,” he began. “We will get through this. She’s absolutely fine – she just needs to get bigger. We’re a family now.  We have a beautiful daughter that looks like her mother.”

I swallowed and nodded. He picked up the phone.

“Yes. Andy and Melissa Areffi for Baby Girl Areffi.  Yes, we’re the parents. Thank you.”  The doors buzzed loudly and swung open. He hung up the phone and we glided into the unit as the doors sealed behind us.

There was nothing but an ocean of clear plastic, the undulating waves punctuated by the constant activity of countless monitors and machines, The sounds of babies crying was replaced by electronic beeps and the rhythmic hum of ventilators.  It was sterile, lifeless. Soulless. There are no babies here, I thought.  Then we stopped in front of a little plastic bed that looked more like a cake pan complete with Saran Wrap covering the bottom half. Tubes and wires snaked under the plastic.

Our baby. Oh God. She was so small and a little fuzzy – like a newborn kitten – but besieged by a mountain of wires, and the ventilator breathing for her that covered the lower half of her face. I reached out and touched the edge of the bed, right next to her hand – as close to her as I could get.  A nurse hurried over to us.

“Congratulations, Mr. and Mrs. Areffi! She’s beautiful,” she said, smiling. “My name’s Margarita, and I’m your daughter’s nurse. Let me just give you a run down of what to expect…” She then launched into what seemed like an endless list of rules and safety precautions for the unit and handling a “preemie,” – a baby born premature.  They couldn’t be overstimulated by touching them too much.  They need a lot of sleep, since that’s when babies grow, so we shouldn’t interrupt her schedule, and spend every waking minute there. We wouldn’t be able to hold her for at least another week – and even then only under supervision.  And then a stern reminder that I needed to get better, too, which wouldn’t be accomplished by not taking care of myself.  I needed a lot of rest so I would be well enough to take care of Ana when she came home. Margarita gave Andy a stern look, as if she knew he’d have to force me to take it easy.  I felt my head start to spin with the overload of information, then looked up at Andy, and saw his eyes were slightly crossed and unfocused – although he was desperately trying to pay attention. How the hell was I going to remember all this? Margarita smiled and patted my arm. “See?” she said.  “It will be all right.”  She continued on her rounds to the next incubator – which looked like one of those huge Sears Craftsman toolboxes on rollers – but with a clear plastic top.

A tiny movement caught our complete attention. Her hand was gripping the very tip of my thumb; since it was too small go actually go around it.  We both gasped in amazement.  They can do this, this tiny? Then she opened her eyes and looked at me. They were like a vast blue sea, quietly engulfing me. I was lost. She was perfect. I felt Andy draw in a quick breath beside me, then reach back down to take my hand.  It was wet.  It was only then I realized we were both silently crying in awe.

“Oh God, she’s perfect, isn’t she?” I asked him.

“Yes, she is,” he managed to choke out.

Our baby girl started flailing.  Andy and I immediately started to panic – Margarita immediately came back over and soothed us.  “Calm down. Calm down. She’s crying. It’s a perfectly normal baby thing to do.”

“But she’s not making any noise,” Andy pointed out.

“It’s because the respirator prevents it.  Trust me, she’s screaming.”

“I wish I could hear her,” I lamented.

Margarita looked at me and smiled.

“Ay mi. I will remind you that you said that in a year,” she teased. “Just because she’s small doesn’t mean she’s not tenacious.”  She smiled at the baby fondly. “This little girl already has definite opinions that she’s in charge.  She’s already pulling out her IV’s.”

“Oh God, is she okay? Does it hurt her? Is she…” I rambled.

“No, honey. She’s fine.  She just doesn’t have time to be stuck here – she’s all set to get out of here already. Don’t you worry.  That’s a very good sign, the babies that give me trouble. It means she’s a fighter.”

That night Andy snuggled with me on my hospital bed, getting ready to start a movie on our laptop computer, since the hospital’s idea of cable was having the Colonoscopy channel. I yawned widely.

“We still have to name her,” Andy said. “We can’t go on calling her ‘hey, you’ indefinitely.”

“I know,” I agreed. “But we really didn’t have much of a list yet, and although both our parents keep saying they don’t care what we name her, I know better.”

He sighed. “I know.”  Then he grinned wickedly. “We could name her Fred.”

I punched him lightly on the arm.

“Yeah. Fred Hubert. How’s that for cruel and unusual?” I retorted. “No, seriously.” I thought for a minute.

“Athena,” I said.

“Kennedy,” Andy said at the same time. We laughed.  Kennedy Athena, I thought. Yes, it fit. Our little miracle had a powerful name to match her resolve and fighting spirit, since Kennedy meant ‘helmeted warrior,’ and Athena after the Greek goddess of wisdom, arts & crafts and war strategy.   And true to form, everyone had an opinion about her name.  Of course, I couldn’t resist telling my father-in-law we decided on the name Zeus instead, just to make him blanch. For the first time in days, we really laughed.

A few weeks later, I sat with Kennedy in a rocker, singing to her softly. I looked up as Andy walked in.

“Hi, gorgeous,” Andy said, kissing me on the cheek as he pulled up a stool next to my rocker and sat down. “How’s our princess?” He pulled the makeshift privacy screen set around us closed. Kennedy’s new incubator was decorated with pictures of us, our families, our dogs, and her rubber ducky – since plush animals were prohibited.   Draped on top of it was a beautiful, Fourth of July patchwork quilt, handmade for Ana by one of the hospital’s volunteer groups.

“Demanding,” I replied, sighing. “And frustrated.”

“Why?” Andy asked.

“Because she’s probably wondering why I keep coming here just to starve her day after day,” I retorted. “I can’t even get enough milk to supplement her! What the hell good am I? I’m a complete failure as a mother!” I shouted. “I couldn’t even give her enough time to grow! She has to have a goddamned plastic box to live in because I couldn’t do it! And now I can’t even fucking feed her a couple of drops of milk! What the hell are these things for, then?” I viciously clawed at my breasts, leaving deep red marks.

Andy grabbed my wrists.  “Honey, honey. Hey, calm down! You’re not a failure! You’re a wonderful mother,” he began.

“How the hell do you know?” I bellowed. “We haven’t even taken her home yet! All we have is a part-time baby we come and feed a couple times a day – she doesn’t even live with us! We aren’t taking care of her, the nurses are! I’m…”  my voice gave out as I continued to rant in a disjointed, raspy silence. Andy kept trying to hold me, but I struggled violently against him, not wanting any comfort. I burst into violent sobs, my entire body pulverized by wrenching spasms of despair. Andy held me tight, and I could feel the hot trail of his tears wind their way silently through my hair and down my neck.

I felt like I was spiraling down an endless abyss.  It was all my fault, I thought. I knew that much, but I couldn’t figure out when or why.  What exactly did I do wrong to make Ana come so early? I wasn’t some crack mom, I didn’t smoke or drink – that’s what caused premature babies, right? Or was it? Was it that I ate too much, not enough, not the right things? I didn’t pay strict enough attention to my doctor. I didn’t get off my feet enough when he told me to. I was selfish, and got up to do things sometimes. I ran a couple of errands. Did that do it? I was too stressed and made my blood pressure get too high. It was my fault. Well, if Andy had cleaned up the fucking house once in a while, then I wouldn’t have had to. It’s his fault. He was supposed to protect me and he didn’t, the selfish bastard. Didn’t he care about me at all? Of course not – because I’m a complete failure as a woman, wife and mother! Oh God, he blames me, too. I can’t even successfully perform one vital female function: I can’t have babies, so we can’t have a family, I can’t even get milk – so what the hell are these things for?  I’m scarred and broken – and ugly and fat to top it off.  Nothing works right. How can he even stand to look at me naked? It’s repulsive. My ass is too fat to get back into my old clothes, so now I’m just fat, not pregnant. The only thing I’m good for is complaining and giving blow jobs. Why does he even stay with me? He probably feels guilty, that’s why. To our everlasting relief, I wasn’t losing my mind.  I had post-partum depression, which was quickly taken care of with a prescription of Zoloft, Dr. Anthony had explained.  Thank God.

Kennedy was doing so well.  She was progressing right on target, her doctor said. Andy and I were becoming used to the NICU and our routine of going twice a day.  It seemed like some babies just moved in and out in no time, with no real problems, unless you count their parents. I never could figure out why the parents whose babies were in the NICU for three weeks or less always seemed to drag out the drama, much more than those of us there for months.  There always seemed to be one or two moms that wouldn’t leave until the nurses actually forced them to go home – to at least bathe. The rest of us learned to ignore them, as we settled in our pace. None of the babies had had any real trauma. It seemed too good to be true.  As it turned out, it was.

The first thing I heard was subdued sobbing through the privacy screen. I peeked around and saw one of the nurses, Rhiannon, standing in front of the incubator of one of the new arrivals – a girl, around 24 weeks.

“Are you all right?” I asked.

She quickly straightened, wiping her eyes. “Yes, I’m fine,” she said, moving on to her rounds.

I didn’t think about it until a few days later, when a Social Worker came to visit baby Jane Doe. Her parents had given her up – they didn’t want the possible future problems or disabilities. I couldn’t believe it.

Two days later, Faith, that’s what the nurses named her, went into respiratory seizures, slipped into a coma, and passed away. There was no logical explanation – we all surmised it was because she had just given up, like her parents gave up on her.  Andy held me as I cried – first for the anguish of losing Faith, and then later, in rage, at the selfish bastards that denied her the one thing she needed to survive – love.

Three weeks later, we took Kennedy home. It had been just over two months since she was born. She was still barely over four pounds and dressed in doll clothes, but she was home where she belonged.

I was tucking her into her crib, when Andy stepped out of the bathroom, toweling off from his shower.

“Isn’t she amazing?” he asked.

“Yep,” I agreed. “Small, but mighty.”  She looked over at Andy, smiled sweetly, then promptly projectile vomited straight through the slats, all down his crotch. I couldn’t help it – I nearly peed my pants laughing. Andy grunted in disgust, turned around, and got right back in the shower.

“Welcome to parenthood, honey,” I teased through the door.

Two months later, I went to Dr. Anthony’s for a post-partum check-up. I was pretty sure I was coming down with the flu – I was congested and kind of queasy. I sat in the examining room, wearing my paper gown, playing with Ana while I waited for my test results. He opened the door and walked in, wearing a grave expression.

“Mel, there’s something I have to tell you…” he began.

Ten minutes later, I called Andy on his cell phone.

“Honey, I love you.”

“What did you break?”

“Nothing! Why would you think that?”

He grunted, as if that question didn’t merit a response. “What is it, honey? I’ve got a meeting in a few minutes.”

“Andy? I’m pregnant.”