Chapter 9

When McKayla told me about her disease, the conventional wisdom was that she would probably live for at least twenty more years and could possibly live for another fifty. The disease affected people at different rates and there simply wasn't enough research to predict how long we had together.

It turns out we got twelve more years together. And irony of ironies, it wasn't the Huntington's that got her.

After our wedding, we spent the next year in denial about her disease. We knew the symptoms probably wouldn't appear for several more years, so we lived from day to day, always in the moment.

The first thing we did was go to visit a lawyer. We drew up wills and a custody agreement. We assigned each other medical power of attorney and spent a lot of time, energy and money doing everything we could to become so legally entwined that we may as well have been married. It was important to both of us that the vows we took before God were also binding in an earthly sense.

If only you straight people knew how easy you have it by just signing a marriage license!

Meanwhile, our daughter grew and grew. She started walking and talking. I stopped breast feeding when Maureen began eating solid foods, and soon she started going to day care a couple of days a week. We settled into a nice domestic routine, made even nicer by the fact that we both knew that we had enough money saved up that we could both retire and live very comfortably if that's what we wanted.

But there was still something we had to come to terms with, and neither of us wanted to think about it. I always felt like I was on eggshells with the subject of McKayla's disease. I never wanted to bring it up, and neither did she.

Finally, one day we went to see her doctors and got the full scoop. We educated ourselves as best we could and sought out the best advice that was available. We joined support groups, mailing lists and discussion boards.

They physical symptoms would come first. They would start slowly, gradual involuntary jerky movements. Then they would become more frequent and spread throughout her body. She would lose weight as her body would constantly be in motion. Ever so slowly, she was going to lose control over her body.

Then her memory would start to fade. First her short-term memory. We would have to write things down. She would tell the same story over and over. Sometimes, I was going to have to give her directions three and four (or more) times.

And then it would get worse.

Only once did McKayla ever ask if I was sure I knew what I was signing on for. I looked her in the eyes. My voice was firm and direct.

"My love," I told her. "I will never leave your side. I promised before God and all our friends that I was going to love you forever, and nothing on this Earth is going to stop me from fulfilling that promise."

The look in her eyes was heartbreaking, but we both knew what we were getting in to after that night I tried to break the door down at her parents's house.

As is often the case when people get out of college, start working and have kids, the next few years flew by for us.

Maureen became the one constant delight in our lives. She may not share a single strand of DNA with McKayla, but she is definitely my wife's daughter.

They walk and talk the same way. Our daughter mimics McKayla's mannerisms. They have the same temperament. And they're both the two smartest people I know.

Like her (other) mother, Maureen is a voracious reader. We buy her books and she blows through them. When she started kindergarten, she was reading at a first grade level. When she started first grade, she was almost to third grade level. Sometimes, she's too smart for her own good, but we don't mind.

I never told Travis about his daughter and I don't intend to. She has never asked about him, and I hope she never does. Maureen has two mommies and knows we love her more than life itself.

When our daughter was three, McKayla came home one afternoon and told me that she had quit her job. I stared at her in stunned disbelief when she asked me to quit my job, too.

"What the hell are you talking about?" I said.

"You don't need to work at the warehouse anymore," McKayla said. "Let's go into business together."

"Doing what?" I asked. "Don't tell me you want to open a bar with a bunch of your friends, because only guys do that and boys are stupid."

"No, silly," she replied with a smirk. "Think about it this way: How much of my commission does the bank take off the top of my accounts?"

I shrugged.

"About twenty percent." She reached into her briefcase and laid a pad down on the table. I looked into the other room where Maureen was playing with one of her little friends from daycare to make sure everything was alright. "What if we got to keep that twenty percent?"

She turned the pad around so I could read the figures at the bottom. My jaw dropped.

"Think of it as a 25% pay increase," she winked. "We can both work from home and be here full time for Maureen."

The only thing I worried about was whether she would be able to keep all her clients. She said she would lose some of the people who wanted to stay with the bank, but her reputation was strong enough that most of them would stay with her, and she was working to pick up a few more.

After a little bit more persuasion, I agreed, went in to work the next day and tendered my resignation. My boss told me he was surprised I stuck around as long as I did and he told me I was welcome back any time. I stayed until they had hired a replacement and had her trained to the point where I was comfortable leaving. The guys at the warehouse threw me a big going-away party and McKayla and I started on a new chapter in our lives.

Like everything else, McKayla jumped into the new business feet first. We incorporated ourselves and started working. I knew nothing about financial advising, but I was a pretty good office manager. She handled the accounts, I made sure she knew where everything was.

Our first "clients" were some old friends, Allyson and her new husband J.B. She married into some money and they were very happy together. At our first "business meeting" (a cookout on the back deck), McKayla passed her one of our new custom-printed cards.

"How do you like our new letterhead?" she asked.

"It's nice," Allyson replied, taking a long pull from her margarita.

"It is, isn't it? My secretary made it up," McKayla said with a wink. She leaned in as if to let our friend in on a secret. "And just between you and me ... I'm sleeping with her."

They giggled and I rolled my eyes.

Business was good for another couple of years and the time seemed to fly on by. Maureen was an honour student in school. My lover only became more beautiful. We were making money, but that wasn't really important to us. After all, we had enough already, but we were together and doing something we both truly enjoyed.

I took lots of pictures and video of our time together. I think I wanted to make sure that if ... no, when ... McKayla started to forget, there would always be reminders of our love for each other and for our daughter.

She didn't want me to know about them, but I found out McKayla was recording messages for Maureen. She told our daughter how much she loved her and how proud she was of her. My heart broke when I accidentally came up on the DVD she had hidden in Maureen's baby book. I watched two of the files, then couldn't bring myself to see my wife face the fact that she knew she was going to be lost to us one day.

The day after Maureen turned seven, we got the kind of phone call no one should ever have to take.

It was McKayla's doctor. Her memory was fine and there were no traces of the "shakes" as we began calling them. Both of us knew that it was only a matter of time before the symptoms of McKayla's disease would manifest themselves.

There was an uncomfortable gravity in her doctor's voice as he told us he wanted her to come in and run some more tests after finding something "funny" in her blood work.

After a second batch of tests, McKayla came back with colon cancer. The doctor thought they had caught it early and after a round of chemotherapy, she had surgery, and then another round of chemotherapy.

She faced this new challenge just as she had faced every other one in her life: head-on, with a steely determination and me at her side. I think the cancer was harder on me than it was on her. At least that was the impression I got.

We didn't tell Maureen right away, but she figured it out anyway.

"It's okay, Mommy," she told me with the kind of certainty only seven year-olds have. "Jesus will look out for Mom."

So we prayed together. I put on a strong face, but there was no doubt in our daughter's mind that her mother was going to get through this. I guess faith was another thing Maureen got from McKayla, because—God knows—she didn't get it from me.

After the second round of chemo, the doctors declared her cancer-free. McKayla had lost a little bit of weight, but otherwise seemed healthy.

We continued on with our lives. After all, what choice did we have?

As we got older, I found myself in church a lot more. Maybe it was because McKayla and I both wanted our daughter to be raised in a Christian environment, but when we first were together, I went because McKayla did.

Now, when I was in church, I talked to God. Not out loud (only crazy people do that), but I prayed. Sometimes I was angry. Angry because God had given the most wonderful woman in the world a disease He did not provide a cure for. Angry because she had done nothing to deserve it. Angry because He was going to take her from me and our daughter.

Sometimes I was introspective. What was the purpose of faith? Why did He put us on earth?

And sometimes I was simply thankful. Despite all of the bitching I did, the fact of the matter was that I had found my soulmate, we didn't lack for anything and our daughter was healthy, smart and would one day have the world at her feet.

It's easy to fall into the trap of prayer. I think sometimes we convince ourselves that if we only prayed harder, God will answer them in the way we want. Of course, it doesn't work that way. He only answers prayers in the way He wants.

Many nights, I found myself praying to St. Peregrine, the patron saint of cancer victims, but McKayla only laughed teasingly at me.

"You don't pray to saints," she said one night. "You pray with saints. You ask them to intercede on your behalf with God."

"Do you pray with them?" I asked.

"I don't ask for intercession anymore," she told me.

"Why not?"

"Because God has already provided everything I need," McKayla said, taking me in her arms. "I have a wife and parents who love me. Doctors who know what they're doing. A wonderful daughter and enough money that I don't ever have to worry about providing for my family."

"Don't you wish for a cure?"

"Every day," my wife said, a wistfulness in her voice. Her raven-black hair had some streaks of gray in it and she refused to colour it out. There were some more lines around here eyes, but she was still the most beautiful woman in the world. "But I know that God won't wave His hand and make my diseases go away. He has a plan for me. He has a plan for you. He has a plan for Maureen and everyone else. We just don't know what it is. That is why we have faith. We have to trust in His will and that when it is done, it will be for the best."

She smiled sardonically, "Even if it doesn't seem that way at the time."

I continued to pray, with St. Peregrine now, but the miracle I wanted never appeared. Or did it?

Her cancer was gone. Her annual check-ups all came back clean. There was no sign of the Huntington's Disease.

We celebrated our 10^th wedding anniversary and everything seemed to be going our way. Business was booming. Our little start-up company had grown into a successful niche enterprise. We couldn't compete with the larger firms, but that was okay. Our emphasis was on personal service and we excelled. We soon outgrew the small office in the back of the house and set up shop in a new facility right up the road. We hired a staff accountant, a secretary and two associates in addition to McKayla and me.

All the while, our family also blossomed. We traveled a lot and made sure Maureen had every opportunity available to her. For a little girl who could have been spoiled rotten, she was surprisingly grounded. She took nothing for granted, she never acted like she was entitled to anything and somehow found the inner motivation to be better at everything than we expected of her. I'm sure she got that from McKayla.

That night, she went to stay with Nanna and Papaw, leaving my wife and I alone at home. We sat on our favourite spot on the beach. McKayla was behind me on one of the dunes. I leaned back into her arms and we watched the world go by.

"They started," she said softly. "Last week."

I only nodded. Of course I had noticed, but I wanted her to bring it up. Her hands were starting to twitch. Nothing major, and only for short spurts, but the early symptoms of her disease were appearing.

"What are we going to do?" I asked after a long time.

She took a deep breath. "We're going to fight it. Tooth and nail; I'm not going to let this thing beat me."

Turning my head, I kissed her gently. Her voice was defiant, but her tears betrayed the fear she felt.

We went inside and I took her to our bed. We made love all night until we were exhausted. Then we held one another, knowing that now it was just a matter of time.

"Moms," Maureen told us one day after school. "You'd better sit down."

"What is it, honey?" McKayla said, joining me and our daughter on the couch. The view out the big bay window was still breathtaking. We had the French doors open letting in the warm ocean breeze. The waves crashing against the shore was the soundtrack of our lives.