The Buck Stops Here (25 page)

I dug in my pocket and found a dollar coin, a Susan B. Anthony. I tossed it into his case and then continued on my way. Following the scent of something incredible, I finally found myself in front of an open-air coffee shop called the Café du Monde. I walked inside and sat at a table, surprised to see once I was there that it wasn’t really a full restaurant. The menu primarily focused on something called “beignets,” but before I even had to ask what that was, the people at the table next to me were served, and I understood. They looked like little square fried pastries topped with generous heapings of confectioners’ sugar. When the waitress finished with them and turned to me, I ordered beignets for myself, along with a decaf café au lait.

There was another group of street musicians nearby, but their music was a bit more spirited and lively than the sax player’s had been. From where I sat, I could also see several teenagers doing a sort of tap-enhanced hip-hop dance to the beat of their music. It was amazing to watch, though soon the crowd that had gathered around was so thick that I could no longer see.

When my order of biegnets came, I took one bite and simply had to close my eyes, it was that good. As I ate I seemed to recall Tom talking about these, insisting that these pastries had to rank in the top three most delicious foods in the world. At that moment, I doubted I would argue with him.

When I had polished off my entire order, I strolled a bit more, eventually ending up back at my hotel. I wished I had a canoe and a waterway so that I could work off the fat and sugar I had just consumed. I considered swimming, but the courtyard was so sedate and quiet that I was afraid a good swim might make too much noise. Finally, back in my suite, I pulled on my bathing suit and then went back outside and slipped silently into the Jacuzzi.

I leaned back and relaxed in the hot, bubbling water, looking up through the trees at the star-filled sky.

May you love my city as much as I love you
, Tom’s note had said. Had he been here right now, instead of thousands of miles away, I would have told him that even though I had only been here a night and a day, I already felt, in a very strange way, as if I had somehow come home.

Twenty-Eight

The next morning I wore another of my new suits—a gray Anne Klein with a red silk top. Veronica had said that parking at Family HEARTS was a problem, so I left my car in the hotel garage and took a taxi. Once we pulled to a stop in front of the office, however, I was a little embarrassed, as it couldn’t have been more than six or seven blocks from the hotel. Next time, I would know to walk.

I paid the driver and then tried the door of the building, which was locked. I was just trying to see inside when Veronica came rushing up behind me.

“Hi, Callie,” she said breathlessly. “I’m sorry I’m late. Tucker spilled apple juice all over my pants, so I had to change.”

I smiled at her, observing that despite a last-minute clothing change she was still stunning. She used a big, jangling set of keys to unlock the door, motioning for me to step inside. She turned lights on as we came in.

The place was definitely utilitarian, which surprised me. I would have expected someone who dressed and looked like Veronica to have invested a bit more money and effort into her surroundings. Instead, the walls were a scuffed and marred yellow, the furniture was obviously well used, and the whole office gave off a rather tired and worn air.

Still, this was a good sign. Obviously, they weren’t wasting money for fancy digs. The last few rooms were a bit better, with what looked like a well-stocked computer lab, and then the phone room, which contained a table with three phones, a television, and a big couch. Veronica’s office was at the very back, and it opened through French doors onto a courtyard. She opened those doors now, letting in the morning breeze, and I remarked that there was a similar courtyard at my hotel.

“Oh, honey, in this part of the city everybody’s got a courtyard. Didn’t you wonder why the buildings are all so close to the street? That’s because we tuck our yards out behind us, hidden away, where we can relax in private. I’m just glad it’s a cool morning. In an hour or so, I’ll have to turn on the air-conditioning.”

Workers began wandering into the building, and as the office came to life on a Monday morning, I was able to see, firsthand, the kinds of situations they were dealing with. I could almost feel a checklist in my brain, going down the row and marking items off as they happened. By the time Veronica was ready to sit and talk, there was one volunteer working the phones, another on the computer researching a disease for a family who had just contacted them, and a pharmaceutical representative meeting with someone in the front room about a new drug trial. Through it all, Veronica stayed cool, assigning people to tasks and seeing that things ran smoothly. I was very impressed.

Alone in her office, we were able to get more specific about the full range of services her organization provided. I took notes directly into my laptop, glad to see that I was quickly developing a full picture of the various ways that the company fulfilled their mission statement.

“So what’s ‘internet weeding’?” I asked, noting that that was one of the services they offered on their brochure.

She smiled, but with a sadness to her expression.

“That’s probably one of the most practical services we offer,” she said. “Especially in the beginning, when families are first given their diagnosis.”

“What is it?”

“It’s our way of guiding parents, on the web, to the sites that will do them the most good—and protecting them from the ones that will do the most harm. In this day and age, when a person gets a diagnosis for a rare disorder, one of the first things they will do is run to their computer and go online to find more information about it. Unfortunately, anyone can post anything on the web, you know. My friend Sandy was researching her daughter’s disorder when she came across one site that featured a photo on the home page, in vivid color, of a little girl in her casket.”

“Oh, no.”

“I’m sure the people who created an online memorial to their child meant well, but who would post something like that to the web? I told Sandy to stop searching, that I would do it for her and weed out bad or wrong or maudlin websites and just pass along the ones that were useful. We called it internet weeding, and in those early days, I think it’s one of the things that kept her and her husband sane while they struggled to understand their daughter’s diagnosis. Sitting down and surfing the web wasn’t a hard thing for me to do, and at least I felt like I was helping in some way.”

“It makes sense,” I said.

“A few years later, when Beth got the diagnosis of JDMS for Maddie, I did the same thing for her. It’s funny, but having two friends who both struggle with children who have rare disorders gave me an appreciation for what they go through beyond the scope of simply dealing with an illness. As my husband says, ‘If the disease is rare, people just don’t care.’ Or, at least, people don’t get it. These parents feel so lost, watching their kids suffer—and sometimes even die—from disorders that no one has ever even heard of. It’s tough. Our organization does what we can.”

I typed in a few notes and then asked the question I had been wanting to ask since the day before.

“Can you tell me about Maddie and her condition?” I wanted to know and yet dreaded the story of how such a little girl could be saddled with such a big problem.

Veronica described what had happened to Tom’s niece, how Maddie seemed perfectly healthy and normal until one day a few years prior, when a rash popped up on her elbows. Soon, the rash had spread to several other joints, as well as both cheeks. Her doctor prescribed different ointments and creams, but nothing seemed to make the rash go away. Beth noticed that Maddie was increasingly lethargic, sometimes to the point where she couldn’t even climb stairs anymore without taking breaks along the way. Fortunately, their pediatrician took all of this into consideration and ordered some extensive blood work. As it turned out, the girl had a myositis disorder, which basically meant that her autoimmune system was malfunctioning, causing her body to attack its own healthy tissue in the muscles.

“She’s doing great right now,” Veronica said. “In fact, thanks to her meds, she’s currently in remission. But the prognosis can be scary. They take it one checkup at a time. The worst part for them is every Friday night, when it’s time for Maddie’s shot. She gets methotrexate, which is a real wonder drug for keeping the symptoms in check, but it also causes about twelve hours of nausea and vomiting.”

“Every week?”

“Pretty much. I’ve been there when Beth gives her the shot. Maddie just sits there and whimpers, knowing what’s coming in the hours ahead. I tell you what, Callie, watching that child suffer like that absolutely breaks my heart. In the face of that kind of ongoing, week-in, week-out misery, if Family HEARTS can provide some hope and support and connection, then it’s worth every moment of everything we do.”

Twenty-Nine

Eventually our conversation moved on to other areas of my investigation. Once I felt that Veronica had answered most of my immediate questions, I saved the file in my computer and snapped it shut, telling her that I was thus far very impressed with Family HEARTS and with her.

“You obviously have some real talents in this area,” I said.

“Well, thank you,” she replied, a slight blush covering her cheeks. “I suppose you could say it was a long and winding road that brought me to my true calling.”

“What do you mean?”

“I was a late bloomer, business-wise. First I thought I just wanted to be a wife and mother, and then I went off on a wild tangent and tried to become a model. I finally came to my senses, returned home, and earned my MBA. Now I’ve come full circle: I’m a businessperson
and
a wife and mother. I’m glad to say I’m quite happy with the way everything in my life turned out.”

Unable to resist, I seized the natural segue and asked about her and Tom.

“You were engaged to my boss for a while, weren’t you?”

“Tommy?” she asked, her face positively red now. “Another lifetime ago. I’m surprised he even mentioned it.”

It had been unprofessional of me to bring it up, but I couldn’t help myself.

“Actually,” I said, “I asked him one time why he had never married. He said that he had been engaged, but that she broke it off. Then when I was coming here, I learned that the ‘she’ was you.”

“That was all so long ago. A lot of water has passed under the bridge since then.”

“You two grew up together?”

“We did. In high school our becoming a couple was sort of a foregone conclusion. Once we were older and engaged, I saw the path all laid out for me and freaked. I
so
wasn’t ready for that. It had nothing to do with Tommy, really. It was me. I needed to break away, to see a little bit of the world. To learn what I truly wanted out of life.”

“And did you figure it all out?”

She looked away, and I saw something flash in her eyes, an expression I didn’t understand.

“It wasn’t all smooth sailing,” she said. “I went through some painful times.”

She turned her focus back to me and forced a smile.

“But, then again, haven’t we all? What’s important is that now it feels like I have the best of everything—great husband, wonderful son, and a job that’s as flexible as I need it to be. Anyway, tell me how else I can help you in this process. Tommy just said that you would be showing up to investigate us, but I didn’t get any specifics.”

I reached into my briefcase and pulled out a blank three-page form.

“I think we should start with a basic application,” I said. “There wasn’t one in your packet, but I need it in order to obtain information and get certain permissions. I have to look into a lot of different areas of your business, and this is the best way for me to get started.”

“Sure,” she said, taking the application from me. “What else do you need?”

I pulled out my checklist and read from it.