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Miracles from Heaven
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Dedicated to
The One who allowed me to be so many people and so many emotions during this journey with Annabel. The One who was patient as I was filled with anger, sadness, despair, loneliness, and silence. The One who patiently waited and continually carried me when I thought I was alone. The One who mastered everything so delicately like a well-tuned orchestra. The Creator of all good things. The Alpha and Omega, the beginning and the end. The One who reigns forever, Yahweh, redeemer, friend!
Prologue
He performs wonders that cannot be fathomed,
Miracles that cannot be counted.
Job 9:10
WHEN MY HUSBAND AND I settled down to start a family, we prayed for the ordinary miracles: healthy children, a peaceful home, a late-model pickup truck with good AC, and well-timed rain that fell plentifully on the flower beds but never on Friday night football. We expected nothing more breathtaking than a North Texas sunset, nothing more heavenly than growing old together. Our definition of paradise was a secluded plat of land outside Burleson, Texas, a small town just south of the busy Dallas–Fort Worth metroplex.
We’re churchgoing people, Kevin and I, people of faith. We’ve experienced “showers of blessings,” as the old gospel song says, “mercy drops falling around us,” like when a baby is born after a family has given up hope or strangers cross paths and some tug of the heart tells them they are already friends. We always believed in miracles, in theory. With God all things are possible, we’re told, and every once in a great, great while, I’d hear about something that defies odds and brushes fears aside.
Now I’m holding a miracle in my hands.
The nurse hands me a computer printout, two pages listing all the medications my daughter was on last time I brought her to Boston Children’s Hospital—the time she told me she wanted to die and be with Jesus in Heaven where there is no pain.
“Three years ago?” the nurse says, one eyebrow up. “Can that be right?”
That is right. The fact that it’s impossible doesn’t matter anymore.
“So, Annabel,” the nurse says, “looks like you’re twelve now.”
Anna nods enthusiastically, happy to be twelve, happy to be in Boston, happy to be alive. The nurse directs her to hop up on the scale.
“While I get her vitals, could you please go over these?” the nurse says to me, indicating the printout. “I need you to review for accuracy so I can update on the computer. Just mark the ones she’s still taking.”
My eyes drift down the list.
Prevacid (lansoprazole), a proton pump inhibitor; probiotic supplement; polyethylene glycol; Periactin (cyproheptadine), an antihistamine with additional anticholinergic, antiserotonergic, and local anesthetic agents…
It’s like looking at the surgical scar on Anna’s abdomen, just a pale white line now where she was stitched and reopened and stitched back together again.
Neurontin (gabapentin), an anticonvulsant and analgesic; rifaximin, a semisynthetic antibiotic based on rifamycin; Augmentin (amoxicillin and clavulanic acid); tramadol hydrochloride for moderate to severe pain…
For a moment, the lengthy list blurs in front of my eyes. My God, what her little body went through.
Hyoscyamine, a tropane alkaloid and secondary metabolite; Celexa (citalopram hydrobromide), a selective serotonin reuptake inhibitor…
I smile up at the nurse. “She’s not on any of these.”
“You mean, not any of these?” she says, indicating the first column with a pen.
“No, I mean these.” I hold up the two pages in my hands. “She’s not taking anything.”
“Wow. Okay.” She studies the list. “That’s really—wow—that’s…”
A miracle.
She doesn’t say it, but that’s okay. People generally feel more comfortable calling the small things coincidence or serendipity or dumb luck. Doctors use words like spontaneous remission to explain away the big-time inexplicable. A while ago, I made the conscious choice to use the M-word. I didn’t always see God’s hand in the tangled threads of my life, but now I do. He was there in our beginning and every time our world fell apart. He’s with us now and into the unknowable future.
Standing in the light of all He’s given us, in the light of all that’s happened, I can’t not tell you our story.
Chapter One
So it towered higher than all the trees of the field;
its boughs increased and its branches grew long,
spreading because of abundant waters.
Ezekiel 31:5
THE ENORMOUS COTTONWOOD TREE in the fenced cow pasture beyond our gravel drive was a natural wonder, one of those towering, craggy “only God can make a tree” trees. Take a moment to consider the baking heat and hungry borer beetles, the hard freezes that happen every few years, and the summer tornados that routinely whip across central Texas, ragged shirttails straggling out from Gulf Coast hurricanes. For a hundred years or more, that cottonwood provided a home for birds, spiders, and squirrels and watched over the sowing and reaping in the surrounding fields. It stood like a sentry as roads cut through the old oaks and houses were built on the rolling farmland.
A balding giant with sparse, heart-shaped leaves, it raised a dome of dry twigs ninety feet in the air. Around the base of the tree, raw knuckles jutted up through the scrub. Thick, sinewy roots anchored it to the ground. The circumference of the trunk was more than any one person could reach around, but three years ago, Kevin and I could have circled it if we joined hands with our daughters—eleven-year-old Abigail, nine-year-old Annabel, and seven-year-old Adelynn—and that’s basically how we took on the challenging aspects of our family life. When something came along that was too big to get one’s arms around, Kevin and I and the girls only had to reach as far as each other.
About thirty feet up the cottonwood, two massive branches cast outward like open arms. One branch formed a wide bridge to the smaller trees in the shady grove, but the other branch had been broken and lay on the ground. Some mighty rush of wind in some long-ago storm must have wrenched it away and hurled it to the earth. It smashed through the slender boughs below and landed hard, trenching the dirt. High on the broad torso of the tree, a jagged portal was exposed: an opening about four feet high and three feet wide. From the ground below, it looked like the cupped palm of a weathered hand.
The Bible speaks of God preparing a massive fish to swallow Jonah and deliver him on the other side of an angry sea. One might wonder if He began preparing that tree long before any of us were born. One might imagine God whispering into the heart of the cottonwood, Make a way. And it did.
Decades came and went, and the tree kept its secret.
IN 2002, THE YEAR Annabel was born, Kevin and I bought the thirty acres surrounding the cottonwood grove and started building a house. Abbie was a rambunctious toddler; Adelynn was a prayer we hadn’t even thought of yet. I was immersed in the joyful juggling act that happens when “the baby” becomes “the kids.” Kevin had just joined a thriving team of doctors at Alvarado Veterinary Clinic, where they treated large and small animals—everything from cows to cockapoos and even a kangaroo on one memorable occasion. He has a heart
for every creature that comes through the door, and for their owners, but every once in a while, a stray or abused pup would have to come home with him: Trinity, Shadow, wooly white Cypress, clever River, wire-haired Arnold, and dear Jack, part min-pin and part gladiator, who took it upon himself to stand watch whenever Annabel was sick.
When we moved into our new house, Kevin was thinking location, location, location. I was thinking school district, babysitters, pediatrician’s office. He was thinking about a family business; I was thinking about the business of family—which is why we make a good team. Fast-forward to 2011, and neither of us imagined that our life would revolve around hospital emergency rooms and rare disease specialists. Intubations, CT scans, biopsies, and blood draws—these are things that seem inevitable for our aging grandparents, but for a child? Unthinkable! Kevin and I planned a happy life on our picturesque homestead with our perfect children playing hide-and-seek among the old oaks, swinging from the sturdy branches of the cottonwood, and setting up housekeeping in a solidly built tree fort.
That tall cottonwood in particular was a Swiss Family Robinson adventure waiting to happen: jungle gym, fairy castle, and wild animal safari all in one. Abbie and a friend had monkey-barred up one of the smaller neighboring trees to that natural bridge, where they sat and surveyed the world and imagined all sorts of things and returned with a lovely little bird’s nest that had been left empty as winter came on. This amazing treasure fascinated Annabel and Adelynn, but Adelynn was too small to shinny up the cottonwood trees, and Annabel wasn’t feeling well enough to go out and play.
“It could be the meds giving her migraine headaches,” I said to Kevin, “but if we take her off any of that, do we risk another obstruction in her intestine?”
“Let’s not borrow trouble,” he said. “She has her regular follow-up this week in Boston. If there’s anything going on, they’ll nail it.”
Flying out of Dallas–Fort Worth, Anna and I left the city and manicured subdivisions far below. The busy traffic turned to a crawling anthill. The farms and oil fields spread out like a faded patchwork quilt. Annabel rested her forehead against the airplane window and watched it all disappear below the clouds, her thoughts far away, her eyes hazy with the familiar pain of a lingering migraine. She’d made this trip enough times to know she could charm an extra Sprite from the flight attendants with her sweet nature and ready smile. She also knew what lay ahead of her at Children’s Hospital in Boston: days of poking and prodding, blood draws and body scans, invasive tests that left her wrung out and frustrated.
“It’s just for the day,” I reminded her. “We’ll be home before you know it, and then, just like that”—I snapped my fingers—“it’ll be Christmas.”
Immediately on board for the positive spin, Annabel nodded happily and lifted my arm up and around her shoulders, and I drifted my thumb across her collarbone near the site where a PICC line—a peripherally inserted central catheter—had been placed to deliver parenteral nutrition directly to her bloodstream during the miserable episodes when pseudo-obstruction motility disorder made it impossible for her little body to process food or even water in the normal way. In simple terms, pseudo-obstruction motility disorder is when things don’t move normally from point A to point B in the intestines. Sometimes this is nerve related and sometimes it’s muscle related; Annabel’s specific issue affected her nerves’ ability to “fire” synchronically. Flare-ups often look and act very similar to intestinal obstruction. Hence the name pseudo-obstruction.
For four years, we’d been dealing with the brutal realities behind all that clinical vocabulary. We’d fought long and hard, first to get to that devastating diagnosis, then to find some kind of hope and meaningful help for our Anna. We finally found our way to Dr. Samuel Nurko, director of the Center for Motility and Functional Gastrointestinal Disorders at Boston Children’s Hospital and an associate professor of pediatrics at Harvard Medical School. He’s recognized as one of the world’s leading experts on pseudo-obstruction motility disorder, but Anna and his other patients love him for his quick, wide smile and his bright Elmo neckties. He was a life raft. We clung to him, though the expenses of the treatment and travel were bleeding us dry. This particular trip had been financed by the sale of Kevin’s upmarket, tricked out, Look, Ma, I’m a Texas animal doctor! pickup truck, which he’d paid off with great pride a few years earlier.
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 assault on physical and emotional well-being. Annabel had gone a long way toward the latter end of that spectrum. This damnable 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 Passenger 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 Mason–Dixon 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-shirt with a sparkly butterfly and a built-in short-sleeved jersey jacket that zipped up the front—her favorite fashion statement at that moment—which was perfect for a sunny December day in Dallas–Fort Worth but not so much for Boston. As she paused to pull on her warm parka, I noticed that during the flight, the little butterfly shirt 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.”