“I didn’t do it on purpose…” He’s not telling me the whole truth. No way. There’s got to be more to this story. “I’m sorry, Peter. I really am.”
Then his head snapped in my direction.
“Wait a minute. How about Claus? Were you not sleeping with him?”
And here we go. I lowered my gaze and exhaled hard. “Claus and I were trying to have a baby.”
“You’ve got to be kidding me.”
I shook my head. “Not kidding.”
“So this could be Claus’s baby?”
“It’s not.” It can’t be. “Do I look like I’m five months pregnant?” He’d never mentioned my weight gain, but I’m pretty sure he’d noticed.
Peter shrugged. “I don’t know.”
Safe answer. “What’s really going on here? Is there more to it than wanting to wait? Do you not want kids?”
“I want kids.”
“Doesn’t seem like it.”
“I want kids!” He hit the swing structure with his right fist.
I took a step back and put the palm of my right hand on my belly.
“I’m sorry.” He shook his head as if trying to wake up from a bad dream. “It’s my fault.”
“What?” I spread out my arms. “What’s going on here? I’m completely lost.”
He looked away again.
“Talk to me, Peter. I love you. Whatever it is, we will figure it out.” I approached him and placed my hand tentatively on his arm. He didn’t complain.
“It’s Huntington’s, Ana,” he muttered, covering my hand with his. “I have Huntington’s disease.” He looked into my eyes.
“What’s Huntington’s?”
“It’s a genetic disease.” He took a step back and raked his fingers through his hair. “It’s an ugly disease, with no cure. With time, you lose control of movements, forget things, can’t make decisions, can’t control emotions, can’t control anything. You become incapacitated and then you die.”
“What?” This can’t be. “Why do you think you have that?”
“It runs in my family. I got tested in my twenties, but the results were inconclusive.” He was looking away from me now.
Inconclusive. He probably doesn’t have it, and we’re stressing for no good reason. “You said it runs in your family. Is that why your mom died young?”
He nodded. “She had it.”
“Does that have something to do with your relationship with your dad?”
He nodded again. “He wouldn’t let me get tested when Mom was diagnosed. I was nine. He had to authorize testing and refused.” He pressed both eyes with the palms of his massive hands and turned to me. “I’m sorry I didn’t tell you earlier, Ana. I tried the day before the wedding, but—”
“Don’t be sorry.” I covered his mouth and remembered his pre-wedding tension. Everything makes sense now. He did try to tell me that day. “Listen, I promised to love you for better or for worse, sickness and health. I meant it. We will just deal with it if we have to.” But we won’t have to. Surely he doesn’t have this Huntington’s.
But what if he did? I touched my belly again. Could the baby have it? What’s the likelihood? It’s best if I don’t ask right now…
“Ana, we are going to get the fetus tested.”
“We can do that?”
“Yep.” He nodded, then opened his mouth as if to add something, but stayed silent.
I wasn’t sure I wanted to know ahead of time if our kid was going to develop something bad as an adult, but the topic didn’t seem up for debate.
Peter fidgeted. “And we can make sure the baby is mine while we’re at it.”
My heart sank, but I nodded sheepishly. “Does it help to know ahead of time if a baby has Huntington’s? Or do you just want our child to know, instead of growing up wondering about it like you?”
He looked at me with empty eyes that scared me.
“What?” What now?
“Ana, if the baby has Huntington’s, we are not having it.”
“Peter, don’t be ridiculous.”
“I’m not the one who decided to get pregnant.”
“I didn’t. Decide. To get pregnant. I already told you.” I took a deep breath and sat on the swing. “How could I have known any of this?”
“I already said I’m sorry.”
“So have I.”
Peter crossed his arms and leaned against the swing frame.
“You should have told me about the Huntington’s.” I massaged my temple. “And you should have told me about not wanting kids.”
“I want kids.”
“Then why are you talking about aborting this one? You’re making no sense.”
“I thought we were going to plan the pregnancy, at which point I was going to tell you about my possible HD.”
“And?” I shrugged. “What difference would that have made?”
“We would do in vitro fertilization, test the embryos, and implant one without the disease.”
“Well, that’s a lot of engineering, isn’t it?”
“It’s the responsible way.” He sounded matter-of-fact, like a doctor.
“Responsible or convenient?”
“Responsible. I happen to find the whole ordeal very inconvenient.”
“The embryos that didn’t get selected would probably agree with you on the ‘inconvenient’ part.” I crossed my arms too and wished I had a jacket. “Or do you have a responsible plan for them too?”
Peter took off his jacket and put it over my shoulders. “The other embryos?”
“Yes, the other embryos. What would you do with them in your great reproduction plan?”
He shrugged. “Keep the healthy ones for future pregnancies.”
“How about the others?”
“I don’t know.” He threw his hands up.
“Don’t kid yourself, Peter.” I pointed at my belly. “You would have them killed—some responsible plan.”
He shook his head. “I can’t have a Huntington’s baby. Please don’t be unreasonable about it.”
I’m not the one being unreasonable. “Let’s not test.” I felt a spark of optimism amid that gloomy discussion. “Let’s just go with it.”
“And hope for the best?”
“Why not?”
“I can’t. You don’t understand.”
“You’re right on that one. I don’t understand. This is all brand new to me, and it breaks my heart that you’ve dealt with it since you were nine, and that you’ve lost your mom because of it. I don’t know what that’s like. But one thing I know.” I stood next to him. “I love you, so much. And I’m glad your parents didn’t get rid of you.”
“You don’t understand, Ana.”
I shrugged. “Sorry you’re not happy.” I fought the urge to cry. “But I’m still happy that we’re having a baby.”
“We might be having a baby.”
I tightened my lips, unwilling to engage any further and knowing the baby would be born, no matter what. I am having this baby.
Peter tightened his lips too. Then he walked down to the dock, got in our little red boat, and rowed away in long strokes, gliding easily over the flat water.
I heard two groans before going back into the house, shaking my head.
From the cold beige counter of the bathroom vanity, the pregnancy test mocked me. I always come up short, no matter how hard I try.
“Ugh!” I tossed the test on the floor with violence. “What else is new?” I looked at the broken pieces of my First Response scattered all over the tiled bathroom floor reminding me of how quickly dreams can be given and taken away.
Chapter 23
Peter had been gone for an hour, and for most of that hour, I’d sat by the large living room window and looked at the still lake, waiting.
Waiting for an apology that I knew would come.
Waiting for wisdom.
Waiting to react.
Jäger followed me into the kitchen. I knelt to scratch his thick black fur
and realized I hadn’t thought about Barysh in a long time.
This hurt, too, will pass.
“Bud, you need a bath.” I washed my hands to remove the dusty feeling and the farm-dog smell. “But that can wait, I suppose. I will at least brush you tomorrow, huh?”
I fixed myself a turkey and cheese sandwich and grabbed a little bag of baby carrots from the fridge. The beer shelf had my attention, but I got a bottle of water from the pantry instead.
I took my lunch into the formal dining room and placed it by my laptop, which I’d neglected for weeks. I was about to sit when I heard Peter start the truck.
By the time I opened the door, he was far from the house.
Seriously?
Looking at the blue sky, I shook my head.
“You really don’t like me, do you, God? What do you want from me?” I looked at the bright day one more time before slamming the door shut. “Thanks for nothing. What good are you?”
I powered up the computer and sat. “Me and myself. What else is new? Here I am with my dreams falling apart again, and who’s gonna help me? A whole lot of nobody. Just me.” My head hurt. “I should be reading What to Expect When You Are Expecting, not researching Huntington’s.”
My stomach was unsettled, but I forced myself to eat and resisted the urge to apologize to God for the outburst.
Not apologizing. I’m sick and tired of watching everyone do whatever they want and end up happy. I’m trying my best here, and what do I get? This isn’t fair.
“Do you hear me? Not fair.”
I took what was left of my sandwich to the kitchen and washed my hands to get rid of the buttery smell that suddenly bothered me. Sick of it.
On my way back to the table, I spotted a book I’d never noticed before, a collection of flower paintings. I recognized the cover: Roses and Sunflowers by Vincent van Gogh, a selection of white flowers dominated by half a dozen white roses and four sunflowers. I’d seen the original in Germany with Claus at the Kunsthalle Mannheim, and we’d decided those were going to be our wedding flowers.
“Um…” I touched the cover and swallowed hard. “No. No, God. No signs. No coincidences.” I placed the book under Grant Reid’s Landscape Graphics. “No feeling sorry for myself either.”
I opened the browser and started with the basics on the heartbreaking disease that could take both my husband and my baby. I skimmed over the symptoms and studied the advances toward a cure.
Scientists seemed optimistic about finding ways to slow or stop the progression of Huntington’s in the near future, but the research on curing the disease and rebuilding a damaged brain seemed sketchy to me.
Do I want to read and watch testimonies? I need to. I need to see real people talking about their reality.
One lady’s testimony, in particular, helped me understand Peter’s anguish.
MY HUSBAND IS TRANSITIONING FROM THE INTERMEDIATE STAGE TO A MORE ADVANCED STAGE OF HUNTINGTON’S. HE STRUGGLES SO MUCH TO SPEAK, AND IT’S SO HARD FOR ME TO UNDERSTAND WHAT HE’S SAYING THAT HE OFTEN DOESN’T BOTHER TRYING ANYMORE. HE CAN STILL DRESS HIMSELF WITH HELP. HIS ABILITY TO WALK IS DETERIORATING FAST, AND HE IS READY TO START USING A WHEELCHAIR TO COVER LONG DISTANCES.
HE FALLS DAILY. SOMETIMES HE DOESN’T GET TO THE BATHROOM IN TIME. HE AGREED TO WEAR INCONTINENCE PADS, BUT THEY DON’T REALLY DO ANYTHING. I JUST HOPE IT’S A STEP TOWARD WEARING SOMETHING BIGGER. HE DOESN’T WANT TO BATHE, BUT ONCE HE IS IN THE SHOWER, HE ENJOYS IT.
FEEDING IS GETTING HARDER, AS HE STRUGGLES TO SWALLOW THE 6,000 CALORIES HE WASTES ON INVOLUNTARY MOVEMENT THAT’S EQUIVALENT TO RUNNING A DAILY MARATHON. HE LOST THIRTY POUNDS THIS YEAR, AND THE FEEDING TUBE I USED TO DREAD MIGHT ACTUALLY BE A BLESSING. WHEN WE DISCOVERED HE HAD HD TWELVE YEARS AGO, I MADE HIM PROMISE HE WOULD LET ME CARE FOR HIM AT HOME TO THE END. I’M NOT SURE IF HE FORGOT THE AGREEMENT OR IF HE’S PRETENDING TO HAVE FORGOTTEN FOR MY SAKE.
WE NEED HELP. THIS WEEK HE IS MOVING TO A NURSING HOME. HE CHOSE THE SAME ONE WHERE HIS MOTHER SPENT HER LAST TWO YEARS. I WILL BE THERE MOST OF THE TIME AND STILL DO MOST OF THE WORK. THERE IS A BEAUTIFUL GARDEN THERE WITH A LARGE POND AND A FOUNTAIN. WE’VE ALWAYS LIKED GARDENS. JOHN HAS SAID I CAN WHEEL HIM TO THE GARDEN EVERY DAY, AND THAT’S GOING TO BE OUR SPECIAL TIME—A TIME TO LOOK AWAY FROM THE BUILDING, AWAY FROM THE DISEASE, AND INTO THE LIFE AND LOVE WE CAN STILL SHARE IN THESE FINAL YEARS.
If Peter does carry the gene, how much time would we have?
No, I couldn’t think that way. I had to stay positive. We don’t know if he has it, and there are lots of smart people working on a cure.
Peter showed up at dinner time, and Jäger led him to me.
I was still in the dining room, red-eyed but okay. I didn’t feel alone anymore— there were other people out there dealing with Huntington’s. There was a community of support in place. We would handle it. I knew we would.
“I’m sorry.” He got on his knees and wrapped his arms around me while resting his head on my lap.
“I know.”
“I’m sorry about my reaction, Ana. Sorry I didn’t tell you about it sooner, and sorry I plucked you out of a perfectly good life with Claus to give you this mess.”
“I am where I want to be. Just don’t run from me ever again. I’m strong. All I need from you is a little bit of optimism.”
He nodded in silence and touched my belly with both hands before kissing it.
Our little family. Oh, this must be Peter’s baby. Please…
“Now, I’m not trying to be pessimistic,” he said, just above a whisper, “but you do realize, if the baby tests positive, that means I’m positive too, right?”
I nodded slowly. We’ve always liked gardens, the lady’s words echoed in my head as tears rolled down against my will.
“Shh. You’re right. We’ll figure this out. We just have some hard choices to make.”
“I want our baby, Peter. I don’t care what he has. There has to be a cure in his lifetime.”
“Like there is a cure for cancer?”
“Not for cancer, but today people live with AIDS. Remember how it used to be a death sentence? Scientists seem really optimistic about stopping the progression of HD in the near future. I read a lot about it.”
“Successful scientists are optimistic by nature. They are good at getting funds, and you get funds by being positive.” He sat on his heels. “More power to them. But the reality is that a cure or any useful medication is still a dream, Ana. They need a breakthrough that’s yet to happen.” He kissed my hands and looked at me. “I know your heart is in the right place, but it’s too big a gamble.”
“Don’t you think your life is worth living—even if you do develop HD one day?”
“Yeah. But the idea of dying, after years of falling apart physically and mentally, kind of puts a damper on everything. You want a baby; I will give you a baby. Just not an HD baby. I don’t like the idea of abortion any more than you do, but it happens a thousand times a day and for no good reason. We have a good reason.”
No, we don’t. I closed my eyes with a deep breath. “Can we stop talking about HD? Let’s do the test and go from there.”
“Yes. We can. I don’t want to argue either. Just, please, have realistic expectations.”
“I’m hungry, and I didn’t cook anything. I want to eat out. Can you take me to Aspen’s Mountain Grill? Or is that an unrealistic expectation?”
He stood. “That’s a fair expectation.” He pulled me up and into his arms. “I love you, Ana.”
“I love you too.”
I didn’t know if HD would ever be a reality for us. But right now, it didn’t matter. Right here, right now, my perfect little family of three was all I needed.
Three days later we went to Atlanta for the chorionic villus sampling that would determine our fate. An ultrasound would guide a catheter that would collect a sample of cells from my developing placenta.
“Can you tell when the baby was conceived?” Peter asked the doctor. I blushed.
The doctor applied warm gel to my skin. “Absolutely. That’s the first thing we’re going to do.”
I closed my eyes and breathed deeply, aware of Peter standing next to me.
The doctor moved the transducer back and forth, and then he stopped. “Ten weeks and four days. That’s where we want to be.”
Yes, that’s where we want to be. I opened my eyes, happy to squelch the small and nagging voice that had explored a far-fetched possibility.
“New Year’s at Callaway.” Peter looked at me.
I nodded, remembering how especially handsome Peter had looked that night in his dark Jack Victor suit. “Aw, look,” I said, seeing the baby’s complete silhouette appear on the screen. From the corner of my eye, I spotted Peter’s first proud-papa smile. “Is it too early to know if it’s a boy or a girl?”
“A bit,” the doctor said. “But based on where your placenta is located, I have a very strong suspicion.”
“How strong of a suspicion?” Peter squinted at the screen.
“Ninety-seven percent strong.”
Peter looked at me, and I nodded.
“What do you think it is?” Peter’s upbeat tone matched the hidden sparkle in his eyes attempting to come forward.
“A boy.”
We exchanged grins and then heard what sounded like an accelerating train.
“This is the heart.” The doctor pointed at a white moving object on the screen. “Healthy at one hundred sixty-seven beats per minute.”
Peter squeezed my hand, and I returned the gesture.
We are safe. He is not going to insist on stopping a heart he’s seen and heard—the heart of his baby boy.
The genetic counselor called five days later, saying the results of the biopsy were in and that we could still choose not to receive the information. “If you decide you don’t want to know, don’t come,” she’d said. “You don’t even need to call.”
“Can they make this thing any more dramatic?” I said, ending the call. “The results are in. The lady said we don’t have to go get it.”
“Let’s go.” Peter grabbed his keys.
We got in his truck and drove the seventy-seven miles to the clinic in less than an hour.
A Season to Dance Page 24