“I don’t want to rush you,” she said as she went, “but we’ll only get about fifteen minutes of peace and quiet before they come back, so please don’t feel that we have to waste time in idle chitchat.”
“Okay,” I said, startled but not offended by her bluntness. “I’m here to talk about Family HEARTS, but I suppose we should start with your own situation first, if you don’t mind. Maybe you could tell me a little bit about your daughter.”
“Sure,” she said, pulling out a step ladder from beside the refrigerator, climbing up, and tending to the splatters on the ceiling. “Our daughter Rose has a rare disorder known as mucopolysaccharidosis. I know, that’s a mouthful. MPS for short.”
“MPS.” I repeated.
“Basically,” she explained, “MPS is a genetic disorder caused by the body’s inability to produce certain enzymes. Rose was born with it, though we didn’t even know she had it until she was in school.”
“What happened?”
Sandy told me their very sad tale, that her daughter had seemed completely normal until the middle of first grade, when she suddenly started regressing. Rose had been learning how to read, and then she slowly lost that ability. She had been perfectly well behaved, and then all of a sudden she started becoming a bit of a problem child—being hyperactive, throwing tantrums, acting out.
“It’s almost like she stopped growing up and started growing down,” Sandy said. “Little did we know, that’s exactly how the rest of her life was going to play out. Bit by bit, she has lost her use of language, memory, coordination, cognitive function, and so on. At this point, even though she is thirteen, it’s more like living with a one-year-old. A very big one-year-old.”
“Wow. That must be difficult for all of you.”
“We’ve adapted,” she said brusquely, climbing down from the ladder and putting it away. Then she paused, and her expression softened. “Listen,” she said, “what Rose gives us in return are enormous hugs and an incredible amount of unconditional love. As hard as it is to live the day to day, it’s harder still imagining what our life is going to be like once she’s gone.”
“What’s her prognosis?”
Sandy attacked the dirty table with vigor.
“Most MPS children don’t live to see their twenties,” she said. “Already, the hyperactivity has calmed down, and her coordination has grown worse. She’s not as loud or busy. These are all signs that the disorder has advanced. If I had to take a guess, I’d say we only have a few years left, maybe two or three at the most.”
“I’m so sorry,” I whispered. I don’t know what I had expected to find here, but this wasn’t it. I couldn’t imagine a more tragic or difficult disorder.
“Anyway,” she said, wiping the last of the mess, “can I offer you something to drink, Callie? Iced tea, maybe?”
“That would be fine. Thank you.”
She put away her cleaning supplies, washed her hands, and then made two drinks for us in tall plastic cups. As she did, she described a bit more of their daily life. She was so matter-of-fact about it all, but it sounded like a living nightmare to me, from the diapers to the ankle braces to the child’s inability to express the simplest needs. Apparently, whether Rose was hungry or cold or wet or in pain, it was up to her parents and siblings to anticipate or discern the problem, because Rose was unable to tell or show them. She could still repeat certain words, Sandy told me, but other than family names, she didn’t really know their meanings anymore.
Sandy handed me my tea and invited me into the living room. Once we were there, I saw that it was more like a well-padded playroom. All of the furniture had rounded edges, and there were no knick-knacks on the tables or shelves. A rubber bin held some toys in the corner, and a small TV was mounted near the ceiling, pointing downward toward a big pile of pillows. The walls were decorated with Disney posters, and though the room was clean, there were several big stains in the carpet.
I asked Sandy to tell me how she first became involved with Family HEARTS. She said she was there when the charity was just an idea on paper. Her friend Veronica had always felt a special burden for the needs of families like theirs, families who had children with disorders no one had ever heard of. According to Sandy, Veronica used to talk about the kind of organization that “ought” to exist, and then one day, she decided to bring such a thing into existence herself.
“She drove me crazy at first,” Sandy said, “but in a good way. She was always asking ‘What do you wish you had?’ and ‘How much would this help you?’ She consulted a number of families and came up with a basic list of services. As the agency has grown, that list has grown as well. Family HEARTS has been invaluable to us from a support standpoint. I also appreciate all of their efforts toward securing research dollars for rare disorders. Really, nobody cares till a star comes down with it.”
“What do you mean?”
“I mean that unless some famous person, some celebrity, is diagnosed with your disorder, then you’re out of luck. The general population will never hear about it. Donations are minimal. Research dollars are few and far between.”
I had never thought of it that way, but it made sense.
“I see that you’ve been a board member since the beginning,” I said, referring to my notes.
“Yes. It’s tough getting to the meetings sometimes, but we think it’s important. I—”
We were interrupted by the sounds of people. Suddenly, three kids came into the room, followed by a man. I stood and was introduced to them all. Rose had two perfectly healthy siblings, handsome boys who looked to be about eight and ten. The father, Monty, was tall and friendly, with a warm handshake and a ready smile.
And then there was Rose herself. Again, I don’t know what I had expected, but this wasn’t it. She was a big girl—probably 5’8” and 165 pounds—with large features, dark eyebrows, and a huge, welcoming smile. When we were introduced, she repeated my name, gave me a big hug, and then immediately walked over to my iced tea, picked it up, and drank from it.
“I’m sorry,” her mother. “Forgot to warn you. She’ll put anything in her mouth she can find.”
When Rose had had enough, she surprised me by throwing the half-empty cup across the room. Tea splashed all over the wall and the floor. Much to my surprise, the parents barely reacted at all. While Sandy handed Rose a toy to distract her, her husband retrieved some towels and mopped up the mess.
After that, the boys went up to their rooms to start their homework, and Monty popped a tape in the VCR for Rose. The Little Mermaid came to life on the screen overhead, and the big girl plopped down on the pillows to watch it. She remained there all of about ten seconds, and then she was up again, wandering around the room, fiddling with everything she could touch. Sandy pulled out a toddler-level puzzle from under the coffee table, and Rose sat on the floor and put the large wooden pieces into place. As she worked, she babbled to herself.
“One of the hardest things about Rose,” her father told me, “is that she can’t ever be left alone. We’ve got safety guards all over the place, dead bolts everywhere, even an alarm on her bedroom door in case she gets up during the night. The biggest danger, of course, is that she might accidentally hurt herself. It’s tough, not to mention exhausting.”
I had come there to learn about Family HEARTS, but I realized suddenly that this was what it was all about: families, coping the best they could. No matter what services Veronica’s agency may or may not have to offer them, at the end of the day they were still very much on their own.
In the face of all of this, some of the questions I had come prepared to ask seemed irrelevant now. I moved through the others fairly quickly, asking Sandy to tell me about the board members and to elaborate on some of the recent board decisions. I told her that I was going to recommend that the board be cut a bit in size, and she agreed that that might be a good idea, that there were several members who hardly ever showed up at all.
“Cakeit!” Rose announced, suddenly standing an
d going over to Monty. “Woopsie goodle.”
She climbed into her father’s lap and laid her head against his chest, playing with the button on his front shirt pocket. Despite the fact that she was the size of an adult, he managed to cradle her there like a child. He lovingly kissed her forehead and brushed a lock of hair away from her face. Tears sprang into my eyes, unbidden, at the tender sight. I tried to blink them away, but Sandy saw me.
“It’s okay,” she said softly, reaching out to put a comforting hand on my arm.
“It’s okay,” Rose repeated, like a parrot.
Sandy and I shared a sad smile.
“I don’t know why this happened to us,” she said softly. “But we take the good moments with the bad. These are the cards we were dealt, so to speak, so these are the cards we play.”
I wiped away my tears and smiled at her, not surprised to see that there were tears in her eyes as well now.
“Mommy,” Rose said, and then she looked at her mother and grinned.
“Yes, baby. I love you,” Sandy said.
“I love you,” Rose mimicked.
Only God knew whether they were just words or if she still understood what they meant.
Forty-Three
When I awoke the next morning, my mood was somber. After last night’s visit with Rose and her family, I felt changed somehow, as if every single thing in my life had suddenly been put into perspective. Even Bryan’s death felt different to me, and I could clearly see the good among the bad for the first time. At least he hadn’t suffered. At least I didn’t have to watch him slowly waste away before my eyes.
I had given out a lot of grants on Tom’s behalf over the past few years, but I doubted there were many that had brought quite the satisfaction to me that this one was going to bring. If we could do anything—anything—to help families like the Norrises, then I was willing to step up to the plate and ask Tom for the biggest grant he was able to give. I thought again about Family HEARTS’ mission, to provide Help, Encouragement, Advocacy, Resources, Treatments, and Services to families with children who had rare disorders. Before coming here I hadn’t known any such families myself, but between Beth Sparks and Sandy Norris, I had had a taste this week of the struggles they went through. If we could make their lives easier, if we could make their children’s disorders more well known, then I would rest assured that I had done the best for them that I could.
That was how I signed off on the report for the J.O.S.H.U.A. Foundation. As far as I was concerned, my investigation of Family HEARTS was complete. The place had passed Harriet’s financial audit with flying colors; no surprise there. Now I had a short list of changes to suggest to the board, and if they were willing to comply, then I was hoping I could talk Tom into making his donation much larger than the $50,000 he had first intended.
At 8:00 A.M. sharp, I closed out the file and prepared to call the warden at the prison in Georgia. It was hard to change mental gears back to my own investigation, but as I dialed I forced my brain into the task at hand. I reached the warden easily, and he said that my associate would be allowed a meeting in a private room, no problem. I thanked him and then called Gordo and told him to be there at 10:00 A.M., dressed to kill.
“I didn’t have much time to find a decent suit,” he replied. “I think I’ll just be dressed to maim.”
After I was finished talking to him, I decided to take a walk and clear my head. The conversation I was going to have with James Sparks today was going to be different than any conversation he and I had had thus far. This time, I had leverage. This time, he was going to give me answers.
Outside it was muggy and warm. I was glad I had worn sneakers with my slacks as I walked vigorously through the French Quarter, zigzagging my way to the Mississippi River. Once there, I strode alongside it, the murky brown water to my left and the beautiful old city to my right. I passed a giant paddlewheel boat, quiet and still in the morning light, looking perfectly at home on this river amid oil tankers and giant barges. I moved to the right, walking in the shadow of the Jax Brewery and the New Orleans Aquarium. When I reached the ferry landing at Canal Street, I was tempted to take it to the other side just for the scenery, but I didn’t know how long the round trip might take. Instead, I turned around, crossed the street, and made my way back through the Quarter toward my hotel. I passed a boutique on the way and paused long enough to go inside and buy a strapless bra and a slip to go with my evening gown for tomorrow night’s ball. A few doors down I spotted a pair of shoes that might match the dress and bought them as well.
With a half hour to spare, I was almost to my hotel when I passed a church front with a sign beside the door that said “Visitors Welcome.” I hesitated, feeling drawn to go inside.
The door was heavy, and it made a soft whooshing sound as I opened it to reveal a darkly lit entrance room lined with stained-glass windows and glowing pay candles. I stepped onto the marble floor, the door softly swinging shut behind me, and I was caught up in the hushed beauty of the place. Somehow, I could feel the comforting presence of the Lord inside.
Walking forward, I saw there were already several people there, scattered among the wide pews, kneeling and praying. I tried not to rustle my packages as I found a place of my own near the altar. I set my things down next to me and then pulled down the kneeling bench and knelt there, hands clasped together. I closed my eyes.
Truth was, God and I weren’t exactly on speaking terms at this moment. At some point during the investigation, it was almost as though a door had closed in my heart, a door of hurt and anger and shame. I thought back now, trying to trace it, and decided the situation began Thursday night at the motel in Albany, when I clutched my pillow and sobbed for all the bad things that had befallen me. Then, the next day, I committed a crime for the sake of my investigation that began a rolling snowball of sins—theft, lies, selfishness. Now, I felt convicted of those things and many more, not the least of which was hypocrisy. Not three weeks ago, I had judged my dear friend Eli for resorting to illegal methods in pursuit of an investigation of his own. I had been shocked to find him in possession of bugging equipment he had no business having for a case he was working on. Now I understood that when the stakes were personal, any of us might also cross the line at any time.
Unable to pray, I opened my eyes and looked up at the altar, where a large plaster Jesus hung in agony from a wooden cross. In my church, the crosses were all shown empty, but at this moment I think I needed this crucifix, the kind that reminded me that all of these sins had already been paid for, long ago, by one Man.
Compared to the sins of some, mine might have seemed minor, but to me they loomed large. Greatest of all, of course, was that I had shut out God. I had denied His grace. I had closed myself to His love.
“I’m sorry,” I whispered, the only words I could think of to utter.
I knew that a part of my rejection of God had come not from blaming Him for what had happened in my life, but from not trusting Him in what was yet to happen. I think I had felt safer doing this investigation completely on my own. After all, if I were to trust Him in these matters, then I would have to trust Him regardless of the outcome. And that was hard.
Yet now, in the silence of His house, surrounded by symbols of His deity, it was so simple to let go and give all of it over to Him. For I know the plans I have for you, the verse in Jeremiah said, plans to prosper you and not to harm you, plans to give you hope and a future. Somehow, trying to take everything into my own hands was a rejection of that verse and of all the promises in the Bible. God held my future in His hands. That was where I needed to place my trust.
I closed my eyes again and asked God to wash away all of my sins. Make me white as snow, Lord, I prayed, and as if in response a song came to mind: Oh! Precious is the flow that makes me white as snow, No other fount I know, nothing but the blood of Jesus.
Almost as if a dam were breaking inside of me, I thanked Him for that blood, for that sacrifice. Silently, I poured my thoughts out t
o my Creator, tears of repentance spilling down my cheeks. I thanked God that I didn’t have to do anything to receive His forgiveness except to ask for it. The blood He shed on that cross was my absolution.
Finally, knowing that time was running tight, I concluded my prayer and stood. Gathering my belongings, I slipped from the stately building and back out into the morning sunshine, feeling whole for the first time in days. I knew that part of my change of heart had come from last night’s meeting with Sandy Norris. Compared with the burden that had been placed on her and her family, mine felt relatively light.
I thought about that as I made my way to my hotel room. Of all the “ignorant” and insensitive things people had said at Bryan’s funeral, some of them were nevertheless true.
At least he didn’t suffer.
He’s with God now.
You’ll see him again in heaven.
In light of all that was going on, I needed to add one more oft-expressed thought, especially in these last few minutes before I would speak to James Sparks and learn the truths I sought:
God never gives us more than we can handle.
“Oh, God,” I whispered as I reached my room. “I really hope that one’s true too.”
Forty-Four
The phone rang at 10:15, and even though I was waiting for it, it startled me so much I nearly jumped out of my chair. Hands shaking, I answered it to hear Gordo on the other end of the line.
“Callie?” he said. “It’s Gordo. I’m here with James Sparks.”
“Any problems getting in?”
“No.”
“How’s his demeanor?” I asked.
“A little belligerent. You ready to talk to him?”
“Sure,” I said. “Give him the phone.”
I heard some rustling and then the voice of Sparks.
“The only reason I’m even talking to you,” he said, “is because I’ve been told that my life may be in danger.”
The Buck Stops Here Page 26
