Part 10 (2/2)

”Pretty much only when I ask her. If I don't mention it, she doesn't seem to have any problem.”

He considered it for a moment and said, ”Maybe it's because normal kids pretend they have a stomachache when they need a little extra attention or don't want to do their homework.”

In effect, he was saying, Think horses, not zebras. And I was so used to thinking zebras, I didn't even know the horse when it trotted into the kitchen looking for an extra hug. I know this sounds strange-and I'm certainly not complaining-but it wasn't easy adjusting to the idea that Anna's health issues weren't the most pressing item on the agenda. She was still on a range of medications, but the daily coping and coddling were suddenly displaced by less dramatic concerns like spelling tests and math homework.

Anna had spent more than sixty days in the hospital and countless more convalescing at home on the couch, not to mention the half days or full days she spent in waiting rooms and doctors' offices or the nurse's office at school. She had a lot of catching up to do, and she was feeling well enough to do it. We hooked her up with a tutoring program and took her in every day after school. This didn't go down well initially, and for the first time in her life, we actually saw Anna exaggerating rather than minimizing phantom tummy aches. And so we proudly earned yet another b.u.mper sticker n.o.body wants on their car: ”My kid is pretending to have a tummy ache!”

We were in constant contact with her teachers, who were nothing short of astonished at the change in her-not just physically, but also academically, emotionally, and socially. Dr. Siddiqui had noted on her chart when he first started seeing her that Annabel tended to use baby talk-a common coping mechanism in children who are chronically ill, which is traumatic and casts them in a terrifyingly vulnerable position. Kevin and I did notice that her speech wasn't at the level Abbie's had been at her age, but Abbie was always way ahead of other kids her age, so we weren't super concerned.

Now her speech began to improve, and I don't just mean diction. She was communicating and socializing with a whole new spirit, really engaging with kids in her cla.s.s and at church in a way she never could before. Chronic illness can be terribly isolating for an adult, but it's a thousand times worse for a little kid who's just figuring out how to interact with others.

By the end of February, the dramatic change in Anna was undeniable. For a long time, she'd been on a rotating regimen of antibiotics, two weeks on, two weeks off. When it was time for her to start a new course, I called Dr. Siddiqui and said, ”Annabel is remarkably better. Can we skip this round of antibiotics and see how it goes?”

As the words came out of my mouth, I felt a rush of grat.i.tude.

Annabel is remarkably better.

I looked at the complicated spreadsheet that mapped out the times and dosages for her medications. Some were given on a regular schedule. Others, like the painkillers, were given as needed. For years, everything about my day revolved around the schedule for her medication and nutrition needs, which I had timed almost to the minute, including a dose that had to be administered every four hours, even at night-and many nights we'd be getting up to administer pain relievers or just sit with her while she suffered.

Now the every-four-hours medication was scaled back to every five and then every six hours. Instead of ten different medications every day, she was now taking three. And the stipulation ”as needed” had dwindled to mean ”not at all.” Annabel was keeping up with her schoolwork and-more challenging-keeping up with Adelynn and Abigail, tearing around the property, climbing, jumping, running, swinging. And Kevin and I were sleeping for six blessed, luxurious, uninterrupted hours every night.

We were nervous about the continuing step-down with the cisapride. That was our big gun, the very scary but very effective drug that had restored some semblance of normalcy to Anna's life.

During the previous two years, when she wasn't on cisapride, she hadn't been able to eat at all. Liquid diet only, which left her cranky and unsatisfied and feeling wretchedly left out and dysfunctional during family meals and school lunches. When she was on cisapride, she could eat soft, bland foods like chicken soup, soda crackers, and Jell-O. Not much better. The first thing doctors did whenever there was a flare-up was take away her food. When she was in the hospital, she was fed with peripheral nutrition through IVs or the PICC line until she could be slowly transitioned to liquids with hopes of graduating to real food. She felt singled out and punished when other kids in the cla.s.s got a Halloween cupcake or when she attended a birthday party where tacos, chips, and Frito Pie were on the menu.

We held our breath the first time we saw her eating pizza with Adelynn and Abbie two hours after skipping her cisapride. The first time she was actually able to eat a McDonald's Happy Meal, we celebrated like she'd sunk the Spanish Armada.

THE WHOLE TIME ANNA was on cisapride, we had to take her to Boston as often as every four to six weeks to see Dr. Nurko, but when the time came for her February appointment, we decided to cancel. He and Dr. Siddiqui were always in contact, and with their blessing, we took Anna off the cisapride, which meant there was really no pressing urgency for Dr. Nurko to see her. Six more weeks went by, and we canceled again, because by this time, Anna appeared to be as healthy as any other kid on the playground. Dr. Siddiqui and Dr. Moses, the pediatrician, were over the moon about the progress she'd made. But canceling that next appointment with Dr. Nurko-Anna's powerful advocate and friend-was huge. We were beginning to get comfortable with the idea that Anna was well, but the stakes were so high, and Anna's hopes had been dashed so many times before. Kevin and I thought and prayed on it long and hard. It was thrilling and terrifying to let go of our life raft and drop that last dose of cisapride into the trash.

Cisapride was the big one. The potential side effects were serious, including damage to her heart. Anyone taking this drug had to be closely monitored on a continual basis, so Anna had to have an EKG every six weeks. Blood a.n.a.lysis every four to six weeks kept track of what the drug, in combination with all the other drugs she was on, was doing to her system in general. It was a risk, but it was worth the chance at a seminormal life.

Now she was free of it. For the moment. But we still had all those other meds lined up on the pantry shelf. The antibiotics she took twice a day as part of a concerted effort to keep her out of the hospital and free of bacterial infections that could tip the balance against her. But taking all those antibiotics has an effect on the system, too, so she had to do two weeks on, two weeks off, rotating different types of antibiotics so she wouldn't develop a resistance, always looking for signs that her digestive system had slowed to a crawl or shut down completely. Good bacteria had to be ingested, because it was being eliminated along with the bad bacteria. The nerve damage in her intestines was addressed with a hefty four-times-a-day anticonvulsant, which protected her from constantly gripping pain. She took prescription-strength laxatives and reflux medication, another anticonvulsant for cramping, prescription painkillers as needed, and a rotating schedule of nutritional supplements that became more important during those periods when she wasn't able to consume any food or liquids.

Imagine paddling a canoe with your little daughter next to you, and the canoe is piled high with everything she needs to stay alive. We did not want to tip this canoe. It had taken us so long to get to this balance. But now, everything had changed. It was terrifying and thrilling at the same time. We carefully weighed each decision as we very gingerly eased her off each medication.

”Okay,” I'd say. ”We seem to be doing all right without that.”

”I agree,” Kevin would say. And finally one evening, he went so far as to say, ”She seems to be doing really great in general. Do you think maybe she really is-”

”Don't say it.” I held up my hand. ”Let's just... be here.”

He nodded. ”I agree.”

We watched. We waited, not expecting the other shoe to drop but wanting to be emotionally prepared to handle it-and help Anna handle it-if it did.

Oh, ye of little faith.

Remember that story about doubting Thomas? Jesus returned to His disciples after He was crucified and had risen again, but ol' Thomas, he just wasn't going to be that easygoing about it. He wanted to touch the wounds on Jesus's body and hands. He wanted to see some scientific evidence that, yeah, this is really happening. Jesus wasn't mad about it at all. I love that response-oh, ye of little faith-and I hear Him saying it with a smile, a sigh, because He knew that this lack of faith came from a place of having been disappointed before and a place of loving Jesus and wanting it so dearly to be true.

”You're right,” said Kevin. ”I don't want to say it out loud either, but... you know what's weird?”

”Weird-compared to getting swallowed by a tree?”

”Well, there's that”-he laughed-”but I was just thinking it was easier somehow when we were tracking all the things that were going wrong. We could write on a chart what meds she was taking. We could mark on the calendar whether or not she was able to go to school, what she ate, and what her temperature was.”

”But now we're trying to track things that aren't happening.”

”Right,” Kevin said. ”And that's more of a challenge, scientifically speaking. Empirical evidence is about showing that something exists. It's a lot harder to prove that something doesn't exist.”

He was absolutely right. Ask doubting Thomas.

BY THE END OF the school year, Anna had blossomed like a little tiger lily and was thriving in all the ways you hope your child will thrive. Her grades were up. She had friends. She had fun. She made plans. She stayed up late reading and invited friends for sleepovers. Kevin and I were able to host all the people who'd helped us over the years for backyard barbecues and be the ones volunteering to help someone else with childcare for a change. Kevin joined the teaching rotation for Homebuilders, a Sunday evening Bible study, and from then on, every other week, the whole group came for dinner at our place. It was such a joy to serve our happily extended family. Feeding our people the way they fed us felt like a great privilege.

One of the sweetest aspects of all this was how happy it made Abbie and Adelynn. The Beam sisters were a trio, as G.o.d intended them to be.

I loved seeing them at gymnastics together. I'd enrolled them the year before, just as a way to get Anna out there and involved in some kind of movement, and Abbie and Adelynn loved it, but it was hard to keep it up with the financial stress we were facing. We were able to attend so rarely, it ended up being more of a frustration than a help.

But this year, Anna was the one pus.h.i.+ng everyone to hurry, hurry, hurry out the door so we wouldn't be late for gymnastics. She had big plans for a gymnastics-themed party for her tenth birthday. Tearing around the place, she kept up with her friends and sisters, bouncing and balancing. The year before, her little leotard had stretched thin and uncomfortable across her distended belly. Now she looked just as healthy and normal as all the other little girls.

That summer, instead of remaining cloistered, pale, and in pain, watching H2O: Just Add Water on TV, Anna was out in the swimming pool with her sisters, three sunscreened mermaids splas.h.i.+ng and laughing until the sun went down. When Kevin walked in the door at the end of the day and rousted everyone out for a trip to Pirates Cove, they didn't have to beg and cajole Anna to come with them-or worse yet, leave her behind feeling left out and blue. For the first time in years, my attention was evenly divided between my three little fish, and some days, I actually had a little time for myself. I hardly knew what to do with that.

That summer went by like summers are supposed to-in a blur of bike rides and laughter and trips to the farmers' market-but beyond that, there was an intensely joyful aura about it. Autumn came and went with all the back-to-school hustle. We ventured to sign up for a full flight of extracurricular activities the girls had always begged to be involved in. It had been so hard to make a commitment to anything, knowing that Anna would miss out 75 percent of the time and Abbie and Adelynn would be forced to sit out as well unless I made a part-time job of calling around to find them rides.

Now we were all on board and busy. Anna was on track with her schoolwork from day one and never fell behind again. That alone lifted a veil of stress that I hadn't even fully recognized before. We had bigger fish to fry. Now we were frying the same fish as any other happy, healthy, overscheduled family.

In what seemed like the blink of an eye, it was December, and I started decorating for Christmas. We never start before December 2, because that's Adelynn's birthday, and I never wanted her special day to be overwhelmed by holiday doings. We make sure it's set apart as a holy, wonderful day all its own, and then we kick off the festivities.

As I unload box after box of family keepsakes, the girls hunt for their favorite treasures. Just about every single item has some special memory from years gone by. One of the favorites from when they were little was a Disney princess village, but by this time there were only a couple dolls and houses left of it. Those Disney princesses saw a lot of action over the years, so most of it ended up broken, but the Beam princesses were unwilling to let go of the few remaining pieces. The Santa collection is my thing, so they let me handle that myself, and I organize all the items according to size and function, getting everything laid out on the dining room table.

Of course, the big thing is the tree. Our Christmas tree isn't one of those carefully flocked and festooned theme trees-quite the opposite. It's an eclectic tree filled with memories, a living, changing reminder of where we came from and how we've grown and changed as a family. There are lots of mementos from Gran Jan and Nonny. Every year, ever since I was part of the family, they would send each one of us something special right after Thanksgiving-a carefully chosen ornament specifically for that person-just to get the ball rolling and let us know they're as excited about Christmas as the kids are.

The girls are endlessly fascinated by the ornaments Kevin and I made when we were little children, and I'm endlessly fascinated by the ornaments they made when they were little. They love hearing Kevin tell the stories behind all the odds and ends that were given to us as gifts. Of course, there's a heated discussion about the star: who put it up last year, who gets to put it up this year, why someone else is clearly not as well suited for this task. Ultimately, it's Kevin's call, and the lucky winner is lifted up into the air, and the star is placed with a lot of excitement and singing. Then it's time for cocoa and popcorn with Christmas carols playing through the TV.

While Kevin and the girls admire the tree, I just take it all in. The lights. The fragrance. The joy. Even during the tough times, we're able to find hope and joy at Christmas. We didn't have to work hard to find joy and hope that year. Anna was happily horsing around with her sisters, drinking cocoa and eating popcorn. As I continued to bustle around getting things done, Kevin would catch my hand every once in a while, and we'd offer each other a secret smile. But we still weren't ready to say it out loud.

The week after the tree went up, I took Anna in for a prescheduled appointment with Dr. Siddiqui. She knew the drill and stretched out on the examination table. He put his hands under the paper gown and pressed firmly around the bottom of her rib cage and across her belly.

”Does this hurt? How about here? This? No?”

It was a stark contrast to previous appointments, especially when she was very little and the palpation was incredibly painful, and she couldn't understand why she had to be hurt like that. As Dr. Siddiqui prodded and pushed at the structure of her digestive tract, she chatted happily with him about all our plans for Christmas and what she was doing in school.

”This doesn't hurt you?” he interrupted. She shook her head, and he pushed harder. ”How about this? And this? No pain here at all?”

The look on his face was what I had been waiting for, I think.

In Hebrews, Paul wrote, Now faith is the substance of things hoped for, the evidence of things not seen.

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