Miracles From Heaven Part 6

"What if she can't?" I asked Kevin.

"We'll cross that bridge if we come to it. She can do it. She'll do it."

The harness was lowered down to her. Annabel sat for another long moment while Mike called her name, telling her over and over to take hold of the rope, and after a while, she reached out and took it. Then she looked up at him and smiled.

"Good girl, Anna! Good girl!" Mike called over his shoulder, "Okay, y'all, she is responding. She's responding."

There was a collective exhale, and I felt Kevin squeeze my shoulder.

"Okay, Anna, we need you to put one foot into that big loop. You see what I mean? Put one foot in that big loop, and then put your other foot in the other big loop, and just pull the harness up so your legs are all the way through, and it's like you're sitting in a swing, right? See how that works? Give the rope a tug, Anna, so I know you're holding on good and tight."

Anna still didn't call out to him, but she followed his instructions and got herself securely rigged in the harness with Mike encouraging and cheering her on.

"Yes! Way to go, Anna. You got it, you got it. Okay, we're going to start bringing you up, and we're taking it nice and slow."

With the Cleburne engine still a good twenty minutes away and Anna dangling in the harness thirty feet below, they began the careful process of raising her up. We waited for what seemed like an eternity.

It should have been easier, considering all the waiting we'd done in the previous years.

ANNABEL WAS IN THE hospital for twenty-two days after that initial surgery, and during that time, we all experienced moments of intense grief and intense grat.i.tude. She was alive, and that came to mean everything. We knew the road would get rougher, but now we knew what to pack. That was something. A lot, actually. For a long time, that was something I'd prayed for: a handle, a set of words I could Google, any clue to the right questions.

When Annabel was strong enough to stand, the nurses told us we had to get her up and walking. Understandably, Anna wanted nothing to do with that. She'd just sustained this ma.s.sive insult to her little body, and she wanted to curl up in her bed with the menagerie of stuffed animals people kept bringing her.

"Anna," Kevin said as gently and as firmly as he could, "you gotta walk for us."

"No. Daddy, I can't. Don't make me."

"I'm sorry, Anna, you have to." He stood her up on the bed and looped her arms around his neck. "I've got you, okay? We can do this."

"As long as you understand," she sighed, "there's no way I can physically do this."

He lifted her down and set her on her feet, supporting and steering her as she made the terrible trip from the bed to the door frame and back again. About eight steps each way-a huge accomplishment that we celebrated with tears in our eyes.

Cook Children's had a lot of wonderful people on staff, but their child life specialist, Dani Dillard, a young woman with bright eyes and an amazing smile, made a lasting, life-changing impression on Anna. Just a few days after the surgery, she tapped on the door to see if there was anything she could bring Anna.

"A couple movies, maybe? Or some music you'd like to listen to? I have some coloring books with me. Do you like to color?"

"Yes," said Anna, "but I have this." She held up her right arm to show Dani the IVs in her wrist and the back of her hand.

"Oh, we can work around that, easy squeezy," said Dani. "Mom and Dad, maybe you'd like to go get some coffee while we work on our coloring for a little while."

Grateful for the opportunity to leave the room together for half an hour, Kevin and I left the two of them chatting over their coloring books, and by the time we came back, Anna announced, "Dani is my best friend at the hospital."

I was amazed at her infinite patience and the creative, drama-free ways she talked to Anna about everything that was going on, physically and emotionally.

"Do you understand what happened to your body, Anna?" she asked.

"I had a surgery," Anna said.

Using a baby doll, Dani showed Annabel what that meant and how the IV was feeding her just like her body was sucking on a straw, and why she had to keep getting out of bed to walk a little each day. Over the years, she got to know Anna's sisters and loved them as well. Dani became part of the routine that made the days and nights bearable for Anna during that long hospital stay, and beyond that, she showed Anna and her sisters an extraordinary ministry made up of small things that were enormously important to this tiny, vulnerable person and her exhausted parents.

We took Anna home to begin the next leg of her difficult journey, and the following Sunday was Easter. We sat in church together as a family for the first time in many weeks, and that was such an abundant blessing. I let the familiar songs and scripture lift my heart.

Why do you seek the living among the dead? He is not here. He is risen!

We had no choice but to accept the reality that Annabel was in for a lifetime of struggle with this thing, but we would never accept that she was at its mercy. Quality of life-not just for Anna, but also for our whole family-was a goal we would have to define and fight for. It would be a feat of engineering. And it would be worth it. There was no point seeking the full living of our life among the dead ideas of "normal" and "supposed to be." We would have to trust in G.o.d's grace and find a new way forward.

Kevin and I set out to learn everything we could about pediatric motility disorders while Anna relearned the simplest elements of a child's life-how to eat, how to play-and did her best to catch up with a mountain of missed schoolwork.

From the time she was four years old, Annabel had suffered horrific pain and other symptoms. Now she was six. In the months following the catastrophic double surgery, the gastroenterologist finally homed in on the true diagnosis: pseudo-obstruction motility disorder, a rare disorder that has a profound effect on the intestines, preventing the body from receiving the nutrition it needs, and antral hypomotility disorder, which is essentially a paralysis in the stomach.

The hardest words I've ever heard and spoken: "There is no cure."

Pseudo-obstruction motility disorder in children is usually congenital, present at birth. Over time, bacterial infections and malnutrition take their toll, along with a variety of issues that directly or indirectly affect almost every part of the body. The exact cause is unknown, and it is a difficult disorder to treat. At this writing, there really isn't one treatment protocol everyone agrees on, because the diagnosis can be difficult to get to, and there's so much variation between the patients.

We were told that it becomes increasingly difficult to maintain a good quality of life for kids with pseudo-obstruction motility disorder and antral hypomotility disorder. Because chronic abdominal pain is one of the main symptoms, they're frequently not able to eat, and even when they can, they don't want to, because they've learned to a.s.sociate eating with physical agony and emotional distress. In many cases, liquid nutritional supplements have to be fed through a nasogastric tube, which goes from the nose to the stomach, or a "G-b.u.t.ton" that's been surgically placed in the abdominal wall. These effectively replace the nutrition needed for survival but place an enormous burden on a kid-as it would on anyone in a society where so much socializing and celebrating revolves around food. Sometimes it's necessary to remove part of the intestines, and surgical bypa.s.s may be considered. Sometimes a colostomy bag and other extreme measures are needed. In the most severe cases, small bowel transplantation may be considered.

A certain percentage of children with pseudo-obstruction motility disorder and antral hypomotility disorder are able to stay the course after diagnosis; they stay about the same during their lifetime, and continuing treatment keeps them on a fairly even keel. Other kids go through a lot of ups and downs with symptoms in constant flux and treatment constantly being readjusted in an effort to keep up. The overwhelming majority of children with pseudo-obstruction motility disorder and antral hypomotility disorder continue a steady downhill trajectory that has already begun by the time they're diagnosed. Their quality of life erodes as the increasing need for pain control becomes a higher priority. Nutrition via IV or PICC line allows them to survive, but not surprisingly, depression is often a major issue.

As we continued our quest to get the best help for Anna, even the most optimistic doctors agreed that there was no statistically measurable percentage of children with pseudo-obstruction motility disorder and antral hypomotility disorder who fully recovered. They simply did not see patients get well and go on to live their lives free of pain and treatment. Our best hope was to make her life as comfortable and happy as possible as the disorders continued to take their toll on her little body.

A pattern began to form. One step forward, two steps back. Sometimes three steps back. Less than six weeks later, she was back in the hospital, then home again but still pale and in pain, her little belly miserably distended. We were back where we started, only now, on the days when Anna felt only moderately lousy, we felt lucky. On the nights when there was nothing else we could do for her, Kevin tucked her into bed, saying, "Maybe you'll feel better in the morning." It felt so empty when he said it, but Anna accepted it with hopeful grace.

We considered it a triumph one afternoon when she went outside to swing, but she came in just a short time later, telling me, "Mommy, I feel strange. I feel like I can't breathe right." I put her to bed with all the standard comfort measures, walking on eggsh.e.l.ls for a few days until she rebounded and felt well enough to go back to school.

We began trekking to one specialist after another, determined to find someone who could help her. One of them started her on a drug called Reglan to spur contractions in her digestive tract. The possible side effects included muscle movement problems similar to Parkinson's disease, but it was the best available option.

"The best medication, cisapride, was taken off the market," the specialist told us. "Only a handful of physicians are licensed to prescribe it. Gastroenterologists. And veterinarians, of course."

"Veterinarians?"

He nodded. "It's mostly used on cats, I believe."

Happily, I happened to have my very own veterinarian on speed dial, and Kevin dove into research on the drug, but before we had a chance to pursue it, Anna ended up in the hospital again. This time, we opted to take her to Dallas, where we'd already connected with a terrific specialist who was known for breakthrough procedures-including pediatric intestinal transplants-and a wonderful motility specialist, both of whom recognized quality of life as a priority. At this point, Annabel was on eight medications, a pharmaceutical plate-spinning act that made it possible for her system to function on a basic level. We didn't want to take her to a hospital where the doctors who understood this didn't have admitting privileges. So off to Dallas we went.

The first day, she was processed through the ER with the familiar refrain-chronic pain, severe distention, and a general malaise-and they ran the usual battery of invasive tests, which located a possible obstruction. The second day, things took an unexpected turn. An earnest young resident came in and sat down across from me.

"As we were reading the CT scan," he said, "we saw evidence of healing on the eighth and ninth ribs."

Completely missing his point (and now I understand that it was very pointed, the way he said it), I started asking questions about brittle bones and even volunteered that Anna was such a rowdy little otter when she was a preschooler, she'd broken her arm more than once. I asked him, "Do you think this means her bones are brittle? What would cause that? Could it be related to nutrition issues that come with motility disorders?"

"It doesn't appear to be the result of an accident," he said. "In cases like this, we have no choice but to have CPS investigate."

"CPS," I echoed. "You mean... Child Protective Services? You're having me investigated for..."

He curtly confirmed that, yes, indeed, that was the deal. And then he left me there, feeling accused and infuriated and very, very frightened. But as I sat there with my ears ringing, I thought of that day Anna was out on the swing and came in saying she was having trouble breathing. I'd tucked her in with Motrin, a heating pad, and a good book. She never said she was in the kind of pain a person with broken ribs would be in.

"I want to know how that happens," I raged to Kevin. "How do a little girl's ribs just break like that-and how do we keep it from happening again?"

He shook his head. "I don't know. Maybe they're seeing some artifact of the distention or something to do with the nutrition deficits she's gone through."

"The only thing they want to believe is that I abused her!"

Kevin stayed with Anna while I went out for a while. She needed clean clothes, and I needed to regroup. When I came back, I was stunned to hear that the man from CPS had been there already and interviewed Kevin at length. Meanwhile, however, the radiologist took a closer look at the X-rays and determined that the fractures had not come from an outside force.

It was a relief to have the CPS issue dropped, though an apology might have been nice, but for me, the much larger issues were, first, the fact that this could happen at all and, second, the way that Anna stoically understated-or never stated at all-the actual extent of the pain she was in.

I started talking to her about it in different ways and tried to come up with some new coping methods like "blowing the pain away." With the constant needle sticks she was subjected to in the hospital, we'd made a game out of it.

"When the needle starts to go in," I told her, "we take a biiiiiiig breath in-and then we blow it away like whooooooshhhh!"

It made her feel like she had power over it, and she was always excited to share this trick with other kids in the ward.

Anna saw the Dallas specialists every other week or so. In July, there was another hospital stay, during which they agreed on the official diagnosis: pseudo-obstruction motility disorder and antral hypomotility disorder.

"We are fearfully and wonderfully made," I always tell my girls, quoting Psalm 139. Our body does a thousand small things every moment of every day without our brain ever thinking about it, like an orchestra with all the individual instruments playing together in perfect tune. One of those things is peristalsis, which moves food through the system, but in a child with a motility disorder, that imperative neuromuscular symphony doesn't happen. The nerves misfire as the brain attempts to send messages to the intestine, which behaves as if it's obstructed, which in turn makes the risk of actual obstruction very high.

"I'm sorry to be the one confirming the diagnosis," the specialist said. "It's likely to get worse. It's a very difficult way of life for children with this disorder. Eventually they have to go on peripheral nutrition because the body can't tolerate processing food."

Reglan was the best he could do for her, even though it left her rattling with tremors and a general jitteriness that made sitting through the school day a miserable gauntlet. On the days Anna did go to school, she couldn't wait to get home. On the days she didn't go to school, she couldn't wait for Abbie to breeze in the door with a game or a story or an adventure for whatever level of activity Anna could handle, and Adelynn was right there behind them.

Our home was a happy one, despite the b.u.mpy road. We laughed, we teased, we went places. It was hard to commit to extracurricular activities, but we did our best to keep the girls involved and active. Abbie played softball and excelled in school. I enrolled all three girls in gymnastics.

Every six weeks or so, Anna landed in the hospital for a few days. It became a way of life. Kevin and I had the routine down to a science. Abigail and Adelynn could run the obstacle course, from grabbing backpacks to buckling seat belts to hopping out at their host home. Our friends and family got used to seeing our number pop up on their caller ID at any and all hours. They were there for us at a moment's notice, morning, noon, and night.

We were surrounded by so much love during those years, from the mountain of stuffed animals and strings of colorful cards in Anna's hospital room to the freezer full of ca.s.seroles and cookies at home. (I don't care if you're a master chef-you don't know a thing about ca.s.seroles compared to Baptist church ladies.) Pastor Scott cared for us like a gentle shepherd. Gran Jan and P Paw and the rest of the family never let us feel left out or let down. I hope the one thing Anna and her sisters remember about those years is that enormous wealth of love.

We maintained the plate-spinning act until the end of 2008. I was hauling out Christmas decorations when Anna suffered a terrifying dystonic reaction to the Reglan. As a misfired neurological response gripped muscles in her neck and back, her posture contorted horrifically. Her head cranked back impossibly. She couldn't speak or swallow. We seriously thought she was having a stroke. To this day, the girls refer to this harrowing night as "the stroky thing." In the car on the way to drop Abigail and Adelynn with the emergency child-care tag team, Abbie kept saying, "Mommy, something's really wrong. Anna, say my name! Say Abbie!" But Anna couldn't.

I ran into the ER, carrying her in my arms, and they rushed her into treatment immediately. The doctor told her to stick out her tongue, and it lolled sideways, swollen and pale. She was treated with a megadose of antihistamine and released the next day. We stopped to pick up the girls on the way home, and the moment she got in the car, Abbie said, "Annabel, say my name."

"Abbie," Anna said, and the next moment she was curled up asleep with her head on Abbie's shoulder.

Looking back on the experience, she sums it up with cla.s.sic Anna nonchalance: "It was very disappointing. I had saved a cracker from my Lunchables, and I was really looking forward to that." When I got home and Googled "dystonic reaction," the first website that popped up trumped her cool reaction with the understatement of the day: "Caregivers may find this alarming."

Ya think?

The plate-spinning act had come cras.h.i.+ng down. We picked up the pieces and started building a new regimen of meds-without our big gun, Reglan-wondering how long Anna would be able to endure an endless cycle of events like this-or worse than this, because now the pediatric gastroenterologist was talking about a colostomy bag and other seriously invasive measures as the next step.

"If she were my child," the motility specialist told me, "I would take her to Boston. Dr. Nurko is the number one guy. And he's one of the few people who could write her a prescription for cisapride."

When we got home, I got right to Googling and discovered that Dr. Samuel Nurko, director of the Center for Motility and Functional Gastrointestinal Disorders at Boston Children's Hospital, was also an a.s.sociate professor of pediatrics at Harvard Medical School.

"She's right," I told Kevin. "It says here he's one of the world's leading physicians in the diagnosis and treatment of pseudo-obstruction motility disorder. One of his patients says on this video, He always does what's right, not only as a physician but as a human being.' I like that."

Cisapride, I'd learned, was voluntarily removed from the market because of potentially serious side effects, but Kevin knew enough about it to know that it could be Anna's best hope. Which meant Dr. Nurko was her best hope.

It took several months and a lot of persistent prayer to get her an appointment with him, but in January 2009, Anna and I made our first trip to Dr. Nurko's office at Boston Children's Hospital. We were both nervous, waiting in the white-and-lavender exam room with all our hopes and prayers on the line. Dr. Nurko walked in with his huge smile and jolly bedside manner, credentials dangling from a bright-colored Elmo lanyard. He was positive and approachable and didn't talk down to me or to Anna. She had developed a mistrust of doctors and nurses who were condescending and dismissive, which is understandable, but she responded immediately to Dr. Nurko's easygoing style.

"Do you have any questions about that, little one?" he asked her, and of course she had many. Dr. Nurko answered them all without a whiff of the arrogance and impatience we'd gotten used to.

I felt like we'd made it to the base camp where Anna could regroup and find a new way forward. As Dr. Nurko examined her, he cracked jokes and asked her about her life, but his focus and precision never wavered.

"You have this condition," he told her without drama, "in which the muscles in the GI tract do not work. And when that happens, when you take food by mouth, the food doesn't go anywhere and you cannot absorb it. And as all of us know, when you cannot eat and get nutrition, then you cannot survive."

When he delivered this clear, concise description of pseudo-obstruction motility disorder, it was like a lightbulb lit up over her head. Even for me, after all I'd read and researched, after all the bloviating explanations and excuses I'd sat through, I found that nutsh.e.l.l explanation enormously comforting. He tamed it where others tried to beat it down. Others shook their heads; Nurko nodded.

"You're like Elmo," one of Dr. Nurko's little patients told him a while back. "You just need to paint your head red."

Anna would agree with that characterization, I think. Dr. Nurko had a wide smile and wore funny ties. His clipped Mexican accent and booming laugh stood out from all the usual bustle and chatter in the hallway, so we always knew when he was coming. His expertise brought patients to Boston from all over the world, but I had just as much appreciation for his kindness.

While Anna played, he talked with me about the risks and benefits of cisapride. On the downside, the potential side effects were very scary: cardiac arrhythmias, ventricular tachycardia, congestive heart failure. Dr. Nurko would have to closely monitor Anna personally, which meant bringing her to his office in Boston every eight weeks for blood work, EKG, office exam, and anything else he felt was necessary. We were told these were the drug company's stringent "compa.s.sionate use only" rules. No exceptions.

On the upside, cisapride was our best hope for restoring a balance that would allow her to eat and digest actual food and live a seminormal life.

"The specialist in Dallas was talking about a colostomy bag," I told him. "He wanted to implant a gastronomy b.u.t.ton in her stomach for tube-feeding and meds."

"We should be able to avoid that," he said. "It's important for the best possible quality of life."

"Oh, I agree! I'm so glad to hear you say that. I kept trying to tell them. It's not enough to survive. She needs a chance at happiness."

"Yes, yes. Quality of life."

After a lot of soul-searching and homework, Kevin and I decided to let Dr. Nurko put Anna on cisapride, even though the long-term financial and logistical commitment was about as daunting as leaping the Grand Canyon on a bicycle. The financial burden began to mount, but we never questioned that we were doing the right thing. Dr. Nurko-and cisapride-became our lifeline, making it possible for Anna to eat lunch at school, have a few bites of birthday cake, and enjoy a tiny taste of "normal."

I love seeing the b.u.mper stickers that celebrate things like "My child goes to Texas A&M!" or "My kid is a Fighting Sunfis.h.!.+" or "My Grandchild is on the Honor Roll!" You'll notice there is no b.u.mper sticker that says, "My kid is living a relatively normal life a lot of the time!" But there ought to be. I know we're not the only ones who've learned to cherish a decent night's sleep, a walk in the woods, getting down on pup level for a game of tug-of-war with a happy dog. Dr. Nurko gave those things back to Anna's life. He gave Anna back to us.

In the next three years, Anna and I made twenty trips to Boston. Usually we just stayed overnight and came back, but sometimes Anna's condition was unstable enough that she had to be admitted to the hospital. We didn't want to be there, but Dr. Nurko made it sound manageable. "Now we get you better, Anna. Okay?"

After the first year, we got the fabulous news that Dr. Anees Siddiqui, who'd been mentored by Dr. Nurko, had moved to Austin and would be able to handle some of Anna's follow-up from there. The first time we saw him, he ran a test that required him to constantly check in on Anna to see how her body reacted to small amounts of food and liquid carefully given to her over the course of about twelve hours.

"Do you see anything? Can you tell anything from that?" I plagued him with questions every time he walked through the door.

"We're getting some good information," he kept a.s.suring me.

He couldn't talk results with me while the data were still coming in, and I understood that, but on the flip side, Dr. Siddiqui understood why I had to keep asking, and he never once acted like that was a pain in his neck. He never rushed his encounters with Anna or brushed her questions aside. It was immediately apparent that the knowledge he'd gained from Dr. Nurko extended from the tummy to the person with the tummy, and beyond that to the people who love the person with the tummy.

We still had to trek to Boston periodically to maintain Anna's cisapride treatment, but in between, Dr. Siddiqui helped keep the rest of her meds in balance. They were a great team. Dr. Nurko was big and boisterously funny; Dr. Siddiqui was trim and gently good-humored. Both of them were amazingly knowledgeable and enormously kind. I guess if you think of Dr. Nurko as the Lincoln Navigator of gastroenterologists, Dr. Siddiqui would be the BMW Roadster.

Boston gave us another great gift too. On our very first trip, I was afraid to go there alone with Annabel, so my sister Angie gladly took off from work and went with us. My sweet sister is all about absorbing new opportunities and experiences; if she sees a way to help, learn, grow, or just be part of the scene, she's right there. We were in the crowded hotel restaurant the night before our appointment with Dr. Nurko, all of us a little nervous, and Annabel accidently knocked over her large drink. Our busy waiter, clearly dismayed, whisked by with a few c.o.c.ktail napkins from the bar and left us with the mess.

As my sister and I scrambled to scoop ice back into the gla.s.s and sop up the puddles, I heard a thick Boston accent over my shoulder.

"Oh my G.o.d, he does not have children! Clueless on how to clean up a mess."

And just like that, Angela Cimino-half blond bombsh.e.l.l, half Good Samaritan-stepped into our lives with a stack of paper towels and one of the biggest hearts I've ever known. Her cheeks looked warm and wind-burned, and I could tell by her eyes that she loved to laugh. By the time the table was cleared and Anna was set up with another Sprite, we were exchanging life stories. A single mom of three, she knew a thing or two about spilled milk, and like me, she's not the type who cries about it.

Over the years, we talked a lot about faith and prayer. Angela had been raised Catholic, but church was a place she hadn't been in a long while and wasn't prepared to go anytime soon. Prayer was... well, she'd seen a lot of prayer with mixed results. She didn't spend any time on it these days. Angela was about practical concerns-getting through the day-and at that moment, so was I. It was all the common ground we needed to become fast friends.