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.
I had avoided thinking about the disease, but knowing a result was available put me in a state of absolute agony the whole drive, an agony that only got worse in the waiting room.
We were called in after eight minutes that felt like eight hours.
I looked for concern or happiness in the genetic counselor’s expression but couldn’t read her at all.
She sat and opened our file.
“The CAG repeat size was found to be in the normal range.” Her eyes lingered on the paper for another moment.
“Yes!” Peter punched the air as if he’d just scored a goal.
“So that’s good?” I asked. “That’s what we want?”
She smiled at me and nodded. “That means your baby does not carry the genetic mutation for Huntington’s disease and is not at risk for developing the disorder.”
I covered my face and exhaled. Thank God!
“See?” Peter put his hands on my shoulders. “Everything will be all right now.”
My head bobbed as I laughed and cried, covering my mouth like a child trying to be quiet but finding it impossible.
“This is wonderful news, indeed.” The counselor looked at the file again and then at Peter. “And I don’t mean to spoil the moment, but it is my job to ask. You said you got tested back in the nineties and had an uninformative test result? Would you like to retest?”
“No,” Peter said, without thinking. “I couldn’t deal with the stress of another test, only to get a meaningless result again.”
“You are thirty-nine now.” She looked at his information. “Have you tried undergoing a neurological exam to—”
Peter lifted his hand. “I spent the first half of my life wanting to know. Now I don’t want to know anymore. I appreciate your concern, though.”
“I understand, Mr. Engberg.” She looked at Peter’s hands, and I followed her gaze.
Had she seen something unusual?
“Congratulations to both of you on the baby, and remember we’re here to help if you decide to have more children.”
“Thank you.” He shook her hand.
She looked at me briefly as she shook my hand but seemed more interested in watching Peter, her gaze on his shoulders.
Once out the door, we embraced in silent relief.
On the drive back to Pine Mountain we agreed to stop at my parents’ home. They still knew nothing about the pregnancy.
“I’ll be holding the ultrasound picture when she opens the door.” I beamed as Peter acknowledged my excitement.
“What do you think about Gabriel?”
“Who’s Gabriel?”
“As a name for the baby. Gabriel.” Peter raised his eyebrows.
“Oh. I like it. What does it mean?”
“I’m not sure. Just seems like a good, strong name.”
“Okay.” As long as it didn’t mean anything weird.
“You don’t sound convinced.” Peter twisted his lips.
“I just don’t know what it means.”
“It’s the name of an angel.”
“Okay.” I tried to sound more convincing this time. Gabriel, Michael, Mary … I didn’t really care. We were having a baby, and we were finally both happy about it. The name was not that important.
He squeezed my hand as I touched my belly. Hi, Gabriel.
“I have a little gift for you.” Peter’s eyebrows rose. “It’s in the glove compartment, under the truck manual,” he said, as I looked for something that didn’t belong.
I unwrapped Clint Black’s Greatest Hits II. I didn’t know much about Clint Black, but I liked most country artists. “Thank you.”
“Put it in.” He gave me his pocket knife. “Go to fourteen.”
“Little Pearl and Lily’s Lullaby,” I read from the back cover as a mellow melody and baby giggles filled the Silverado.
Peter upped the volume and sang an impromptu duet with Clint Black, a duet about all things baby and about preparing for a new life.
When he finished, he touched my cheek and brushed away a tear. And his smile filled my heart with lovely warmth and the promise of a new beginning.