Part 1 (2/2)
Quality of life is difficult to maintain for children with this chronic and life-threatening disorder; we were desperate for anything to ease Anna's pain and make it possible for her to lead some semblance of a normal life. Dr. Nurko was one of just a few doctors in the United States who were able to prescribe cisapride, a drug that had been officially taken off the market because of possible damage to the heart and liver. The regular trips to Boston were an imperative part of the balancing act between various clinical risks and silver linings.
Kevin can get into his surgical scrubs and see the science behind it all. I tend to take it more personally. As a mommy, how could I not? I mean, think about the priorities of caring for an infant, when you're focused on the basic necessities of life. You fuss about what goes in, and you monitor what comes out; these are the basic components of your baby's well-being. In order to live, your body has to properly process three things: air, blood, and food. Two outta three ain't gonna cut it. And while major malfunction of the first two would kill you with swift mercy, major malfunction of that third one is a dragging agony.
When your body gets seriously hung up on some failure in the food-processing department, any medical help available to you is humiliating at best, and at worst, it's an inconceivable a.s.sault on physical and emotional well-being. Annabel had gone a long way toward the latter end of that spectrum. This d.a.m.nable dragon bit right into the middle of her, and it was relentless, and Kevin and I couldn't slay that dragon for her, and it broke our hearts.
Through all the pain and invasion, the struggles keeping up in school and being left behind while her sisters thrived, Annabel had displayed a sort of chin-up acceptance I can only describe as amazing grace. During the first two years or so, receiving bad news and setbacks one after the other, Kevin and I developed a thick skin, receiving the latest round of test results like a pair of skeptical armadillos. Annabel, on the other hand, was optimistic about new treatment protocols and philosophical about failed ones. She endured the needles, tubes, and electrodes stoically and did her best to cooperate like a model patient 99 percent of the time. She radiated peace and joy, which was a magnet for loving-kindness. We were surrounded by a tight circle of friends and family who baked and prayed and went out of their way for us, stepping up at a moment's notice to take care of Abbie and Adelynn.
At the airport in Boston, we were greeted by our good friends Beth and Steve Harris, who never let us get off the airplane and face the city alone. We originally connected with them through the wife of the pastor who married Kevin and me. She'd been praying for our family, for Anna's struggles, and when she heard we were headed for Boston, she reached out to her good friends Beth and Steve, who never once let us arrive at the airport without someone to greet us and give us a ride to our hotel.
Beth swept Annabel into her arms, and we headed for Pa.s.senger Pickup.
”Are you ready for Christmas?” Beth asked.
”We're keeping it low-key this year,” I said. ”Family stuff.”
This was not as low-key as it sounds, of course. Beam family holidays are a whole lot of ”over the river and through the woods”: pre-Christmas with my parents (Maw Maw and Paw Paw) in Wichita Falls, Christmas Eve with Kevin's parents (Gran Jan and P Paw) in Houston, and New Year's Eve with Kevin's nonny (that's ”grandma” if you're north of the MasonDixon Line) at her condo by the sea in Corpus Christi.
”Well, that sounds like a blast, doesn't it?” said Beth.
”It is absolutely a blast,” Annabel declared. She deftly navigated the escalator with her little rolling bag, a seasoned traveler.
I caught her elbow and said, ”Anna, sweetie, stop a sec and get your coat on before we go outside.”
She was wearing a pink T-s.h.i.+rt with a sparkly b.u.t.terfly and a built-in short-sleeved jersey jacket that zipped up the front-her favorite fas.h.i.+on statement at that moment-which was perfect for a sunny December day in DallasFort Worth but not so much for Boston. As she paused to pull on her warm parka, I noticed that during the flight, the little b.u.t.terfly s.h.i.+rt had gotten tighter over her distended tummy. An uneasy feeling trickled down the back of my neck.
We arrived at the car and exchanged another round of warm hugs with Steve.
”How long are you here?” he asked. ”Will you have time to go out to dinner with us?” Steve and Beth were perfect dinner companions, familiar with the limited menu that might work for Anna when she was able to eat solid foods.
”Just overnight this time,” I said. ”Routine checkup, blood work, and EKG to make sure the meds aren't affecting her heart. Done and done.” I made a breezy gesture with my hand. ”In one door and out the other.”
I wasn't allowing any other possibility to cast a shadow on us. Not this time, because that was the plan, and Kevin and the girls were waiting for us to come home, and c'mon, Lord, it's Christmas!
Guess our pet dragon didn't get that memo.
”Annabel needs to be admitted,” I was told the next morning. ”We don't like what we're seeing. We need to see what's going on in the digestive tract. She's pale, very distended, and the indigenous migraine is another troubling issue.”
”I understand the need for further testing,” I said carefully. ”The thing is, she's been in the hospital a lot in the last two years-a lot-and she's a trouper, but she'll be devastated. And last week, she was like her normal self-what is normal for her, I mean. As good as it gets. She had the chronic pain, but she was eating and drinking, and her system seemed to be working relatively well. This was supposed to be a routine checkup. Please, if you treat the acute issue, do something about the pain and then let her go; we can follow up with Dr. Siddiqui in Austin. He was trained by Dr. Nurko. They work very closely together. And right close to home we have our wonderful pediatrician, Dr. Moses-he's been caring for Anna since she was a baby.”
I tried hard not to sound like I was begging. But I was begging. Begging this doctor, begging G.o.d-I'd have even begged the corner Santa if it would have done any good.
”They're admitting her,” I told Kevin on the phone that night. I felt his heavy sigh on the other end of the line. He knew the drill as well as I did, and so did Annabel. She'd start out NPO-non per os-which means nothing to eat or drink. IVs were started to rehydrate her and allow her intestines to rest. Next would come the preparations for the invasive upper and lower GI testing, the barium enema and colonoscopy, to make sure we weren't heading for another dangerous obstruction.
”What's her pain level?” Kevin asked.
”She says six or seven, but you know how stoic she is. She always understates it.”
”How's her spirit?”
”Not good,” I said. ”I've never seen her like this, Kevin. She's just staring at the TV, won't get up to look out the window or go to the playroom, won't talk to anyone...”
”Mommy,” Annabel whimpered, ”can I get a heating pad for my stomach?”
”Sure, sweet girl.” I handed her my cell phone. ”Here, talk to Daddy while I run down the hall to the nurses' station and get it. That'll be faster than ringing the buzzer.”
By the time I came back with the heating pad, her daddy had her giggling a little. She was still subdued, for Annabel, but my heart grasped at the sound of her soft laughter. I got her set up with the heating pad, and she handed me my cell.
”I should let you go,” I told Kevin. ”You've got an early morning at work.”
”It'll be okay, babe,” Kevin said, but I could tell he didn't believe that any more than I did. ”I love you, Christy.”
”I love you too.”
”Tell Anna I love her. I told her already, but... you know. Tell her again.”
”I will,” I said. ”Tell Abbie and Adelynn I miss them something awful.”
”They miss you too.”
”Tell them to brush their teeth. And floss. And tell Abbie to pry her nose out of her book and help you with supper.”
”I got it covered. Don't worry about it.”
We said ”I love you” once more. Maybe more than once more. I clicked off the cell, dimmed the lights, kicked off my shoes, and lay down on Anna's bed, spooning her, gathering her small, warm body against my belly as if I could still shelter and protect her there.
”The halls are all decorated with a million twinkling Christmas lights,” I said, stroking her hair away from her forehead. ”After you take a nap, we'll go for a walk.”
”I don't feel like it.” She sounded so hollowed out and sad.
”Oh, c'mon now. Deck the halls, right? This place-they got halls for days, I'm here to tell ya.”
”No, thank you.”
”Should we see if they have the Disney Channel? Maybe that show with Selena Gomez is on. Or I could read to you till you fall asleep. Would you like that?”
”No.”
”Annabel... my sweet girl...”
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