by Maureen Lang
“And I say how can you think otherwise, given the last two generations in her family? Think, boy! Imagine yourself in ten years, with only impaired children in your nursery. I’ll forget, for the moment, the history to which your mother has just referred. Forget the long line of Hamiltons who have helped to make this empire what it is today. I’ll suggest that you consider instead all you’ll miss if you have no one to inherit your abilities and strengths, no hope to see your child do better, perform better, live better than yourself. Instead you’ll have servants coddling children who will need to be coddled all the days of their lives. You won’t know the hope that comes with children. You won’t receive their love because they’ll be incapable of giving it. Is that what you want? Do you think you’ll still love Cosima after the years have passed and you’ve lost so much?”
“I will still love her,” Peter insisted without hesitation. “I’ll love her then as I love her now, perhaps more after we’ve learned and grown together and known what it’s like to be sharpened by God’s own hand. I won’t let fear dictate to me, Father. Or you.”
“Peter!” Lady Hamilton scolded. “How can you say such a thing? The Bible you profess to believe in commands you to honor your father and mother.”
“I am no longer a child, Mother,” he said stiffly. Then he looked down at the floor and his shoulders slumped.
Cosima put her hand on one of them, those strong shoulders that bore so much tonight.
“I do wish to honor you, Mother.” Peter looked up at his father. “And you, Father. But for me to marry Cosima is not outside of God’s will, and it’s His will I seek first.”
“Peter,” Cosima said gently, her hand still on his shoulder. “They’re right.”
He looked at her, brows drawn in confusion. “What do you mean?”
“We do need to honor your father and mother.”
“Even when they’re acting without faith?”
She touched his face. “I love you, Peter. Images of being married to you far outweigh my own fears of our future. But . . . I cannot marry you.”
“What!” He turned to her fully, taking her hands in his and holding them tight. “You cannot be convinced by them.”
“Your father’s words make sense,” she told him gently. “Did you truly listen? I’ve no wish to wake up in ten years with the knowledge that I’ve brought you heartache.”
“You won’t!”
“It’s what I’ve feared all along, everything he said. It’s why I’ve fought so hard not to love you or hope that you could love me.”
“But we do love each other! You see how the hand of God must be in this, when neither one of us sought to love each other. How can you think, even for a moment, that we can abandon that love now?”
Cosima shook her head, confused. She wanted nothing more than to love him, but the fear was already returning, so soon after their proclamation. How could she ignore it?
“Listen to her, Peter.” Lady Hamilton said. “I believe she does love you enough to want what’s best for you, even if it isn’t her.”
Peter stood, facing his parents. “I think you both should go. We’ve made our statements. We understand one another’s point of view. There’s nothing more to be said.”
Cosima stood as well, placing a hand on his forearm. “Wait, Peter. There is one more thing we might consider.”
He looked at her. “If our wedding is the outcome, I’m willing to listen.”
“I don’t know the outcome,” she admitted. “But I do have a suggestion.”
Lord and Lady Hamilton both stood. “We’ll hear what you have to say, Cosima,” said Lord Hamilton, and beside him his wife nodded.
“I shall return to Ireland—”
Peter shook his head, facing her and putting both hands on her shoulders.
But she didn’t stop. “No, Peter, listen to me. If I return home and give you time to consider the repercussions of our marrying, perhaps your decision will be more logical than emotional.”
“Sounds like a reasonable plan, Son,” said Lord Hamilton.
“All right.” Peter spoke with a smile and a look of triumph in his eyes. “But I propose one small alteration. If it’s logic and information rather than emotion you wish me to consider, then there’s only one thing to be done. You may indeed return to Ireland, Cosima. It’s an excellent idea. Only I’m coming along.”
37
Talie raised her hand to knock on the door to Dana’s apartment but stopped. She looked up at Luke, who held Ben perched on his shoulders. Ben was content sucking on his finger, his posture slightly hunched over his daddy’s head.
Talie gripped Cosima’s journal. She’d finished reading it last night and knew the next person to see it must be Dana. And then perhaps Aidan, if . . .
Luke’s face was solemn, as she guessed her own must be. He waited grimly for her to carry through on the knock. She did so, because she had to.
A quick “Be right there!” sounded almost immediately.
Talie glanced at Luke again. Dana’s tone was so happy Talie wanted to savor the moment. She doubted any of them would be hearing her voice quite like that again, at least for a while.
But she didn’t have time to mention such thoughts to Luke. The door swished open and there stood her sister, smiling her own particular smile. The one that said this world was a gift full of hope and happiness.
Talie pushed away another surge of grief and anxiety. Breathe, just breathe.
“Come in!” Dana held the door wide and stepped to the side. “As soon as you called I ran down to the bagel shop. I bought some of that fancy coffee you guys like. Did you have any trouble finding a parking spot?”
Dana’s Rogers Park neighborhood was usually crowded with cars parked on the street, but this was Saturday morning and they’d had no trouble.
Talie eyed her sister closely, wishing they’d come with other news. Dana’s cheerfulness probably stemmed, in part, from wanting to cheer them up. But she still trusted the misinformation that Ben’s delays were due to autism, a condition that affected only him. Talie swallowed hard. Classic autism would have been a better diagnosis, at least as far as Dana went.
Dana neared the dining nook, where her table was set with a colorful pink-and-orange tablecloth, green glass plates, and Talie’s old white coffee cups. Beside a stack of bagels was a tub of whipped cream cheese.
Ignoring their grave silence, Dana chatted on as she poured coffee. It probably smelled good, although Talie’s stomach had ceased demanding food since the phone call two days ago. Yesterday’s visit to Dr. Benson’s office had done little to alleviate her anxiety. The doctor had armed her and Luke with information, information that had sent them here but hadn’t done a single thing to make Talie feel better. She forced nourishment upon herself only for the sake of the new baby, and even with such a pure motivation it was difficult to eat.
Since the dining nook was an open area, Ben was easily visible on the blanket Talie spread upon the living-room carpet. She surrounded him with toys—not that he played with any. She had remembered to bring the one he did know how to use and placed it in his lap. Soon classic childhood melodies announced there was a baby in residence.
“I guess you’ll be seeing Aidan tonight?” Talie asked as she took a seat.
“Sure. We’re going to a movie.”
Talie had tried to rehearse, but whatever words she’d once thought acceptable now escaped her. How could she tell her sister she was a carrier for fragile X, the same as Talie?
She must remember that nothing happened outside of God’s design. In all things, trust Him. All and whatever . . .
With her silence, Talie found Luke’s gaze. She needed him here today. She knew Ben’s diagnosis was as devastating to him as it was to her, but through his ache he remained calm—the only rock in her life these days. She’d tried depending on her faith, but Luke was the best tangible evidence of that faith.
He looked from her eyes to the journal still in her hands, a
s if reminding her about its significance in all of this.
She spoke. “Dana . . . we have something to tell you, something about Ben. And us. Us as in you and me . . . not me and Luke.”
Dana had taken the chair next to Talie. She set aside her coffee now, giving Talie an intrigued look. Her eyes looked very blue today, bright with happiness that Dana always seemed to have on hand.
Talie breathed in once deeply. “It turns out the diagnosis of autism was wrong.”
She knew she’d chosen the wrong words when Dana looked pleased. “That’s great! I always hoped this was just a delay thing, that if you give him enough time . . .”
Talie shook her head. “No, he has a new diagnosis. Results of a blood test came back positive for fragile X syndrome.”
Dana’s brows, a moment ago so hopeful, now drew together. “What’s that?”
Talie looked at Luke, who took the cue. “It’s a genetic disorder on the X chromosome,” he said. “Basically this condition is responsible for the brain not producing enough of a specific protein to function . . . to learn.”
“We spoke to a geneticist yesterday, Dana.” Talie was amazed her voice was steady. Inside she was anything but calm. “She said I’m the carrier. And that fits with what we know about our family history.”
The confusion on Dana’s face expanded to surprise. “What do we know about our family history, except that everybody is fine? Is it possible someone else has it in the family, but we never knew? Because Ben will outgrow his delays too?”
Talie shook her head, closing her eyes against new tears. “No. I’m sorry I’m not doing a very good job at explaining this. First of all, the geneticist told us that it must have come from me because Ben is what’s called a full mutation, and only mothers can produce full mutations.”
“What makes him a . . . full mutation?”
“The protein in his blood is so limited it’s indicative of what’s going on in his brain. Without the protein, he doesn’t learn. His brain will never work the way it’s supposed to.”
Talie saw Dana look at Ben. It would have been easy to think he was perfectly fine; he was still so little. But they all knew that wasn’t true. At sixteen months he couldn’t walk, couldn’t feed himself, made poor eye contact, had low muscle tone . . . the list held so many items Talie was amazed she’d been able to deny there was anything wrong for so long. Even with cousins on Dad’s side of the family being perfectly fine.
“I called Mom last night, Dana. She said she’d meet us here.”
Dana looked at Talie. “Here?”
“I told her we’d be telling you this morning.”
Confusion again. How long would it be before Dana realized this diagnosis affected her, too? Right now, other than that faint confusion, all Talie saw on Dana’s face was sympathy.
“I’m sorry,” Dana said. “I think we all wanted the diagnosis to go away. I guess it’s only changed.”
Talie nodded, knowing she had to forge ahead. “The thing is, this most likely came from Dad.” She swallowed hard, taking a sudden shift from the direction she knew she ultimately had to go. “We think Dad gave it to me because . . . well, there were others in his family like Ben, only we never met them. The baby I’m carrying now has a fifty-fifty chance of having fragile X as well.”
Dana’s eyes rounded—whether in horror or deeper sympathy it was hard to tell. Either would have been appropriate.
“Is there any way of knowing if the new baby is all right?” Dana asked. “I mean, now? Before he or she is born?”
Ben dropped the toy from his lap and fussed when it landed with a thud. Talie rose to pick him up, letting Luke take up the conversation.
“We could have an amniocentesis. The geneticist recommended it, but . . .”
“But what? Don’t you want to know? I’d be dying to find out.”
With Ben in her arms, Talie fished in the diaper bag for the juice bottle she’d brought. “We want to know too, Dana, but the more we think about it the less we’ve been able to justify it.”
“The test has a small risk to the baby,” Luke said.
Talie took her seat, putting the bottle in Ben’s willing mouth. “What if this baby is fine? And we lose it because of a test we didn’t need to take? We’re not going to have any more kids after this, not with the odds we’re dealing with. We know God made this baby, same as He made Ben. What would an amnio do for us? It’s not as if we’d act on whatever we find. We couldn’t end this pregnancy one way or another; it’s a baby God wants us to have—fragile X or not.”
“Maybe it would help prepare you . . . one way or another.”
“I’m prepared enough.” Talie’s voice sounded hard, harder than she’d ever heard from herself. She took a deep breath, hoping the edge would go away. She had more to say . . . words that would affect Dana far more personally than everything that had been said so far. Evidently Dana had forgotten the basic biology facts she’d learned in school, or she would have figured it out for herself by now.
“There is something else you need to know.” Another lump lodged in Talie’s throat. “If this came from Dad, you and I . . . we’re both carriers.”
“What?” If panic was about to erupt beside the sympathy, Dana hid it well. Except for a slight tremor in the word, she looked almost normal, only a slight dimming of the brightness of her eyes.
“It’s passed on the X chromosome. Remember biology? Women have two Xs, but men only have one. They have an X and a Y. Men give the Y chromosome to their sons, not an X. They give the only X they have to all their daughters, and if it’s affected by fragile X, then every daughter a male carrier has is automatically a carrier.”
Dana shook her head, the first hint of a frown forming. “Wait a minute; you’re talking too fast.” She leaned over, rubbing her temples with her fingertips.
“We’re all having a crash course in genetics in the worst way possible. It means both of us inherited the fragile X gene from Dad. If we’d been boys the problem would have ended because he’d have given us Ys and not Xs. But because we’re girls, he gave us the only X he had. A bad one. And we’re not full mutations because it’s never been documented that a male carrier can produce a full mutation. Only mothers can do that to their kids.” The word curse came to her lips, but she bit it back.
“Mutations . . . sounds like science fiction.” Dana gave a little laugh that sounded anything but happy. As predicted, her earlier tone had entirely disappeared. The sparkle in her eyes was fading. Talie wished there was a way to get it all back, but she didn’t have anything to use as inspiration.
“It’s just starting to sink in for me,” Talie said. “It was easier to convince myself everything was fine after talking to Aunt Virg. If it was genetic, it stands to reason their side of the family would be affected too, doesn’t it?”
“But they’re not,” Dana said, then shot Talie a suspicious glance. “Or are they?”
Talie shook her head. She deserved that question after the secrets she’d kept. “Dad’s mom must have been a carrier just like you and me. Every baby she had was born with the same fifty-fifty chance of getting her good X or her bad. The bad one doesn’t automatically produce someone like Ben. Dad got the bad X, but he was just another carrier. And Uncle Steve must have gotten the good one, since nobody in his family has a problem.”
“Lucky him,” Dana whispered.
But Talie knew her sister didn’t believe in luck any more than she did. This was all by God’s design. Talie’s heart twisted at the reminder.
Just then the doorbell rang, and Dana popped up as if the noise had startled her. Talie watched her sister walk to the door as though she were one of Ben’s windup toys, stiff and unnatural.
Oh, Lord . . . be with us now.
But instead of receiving a heavenly peace, all Talie felt was a cold, leaden weight.
Their mother stood at the door. On her face was a look Talie hadn’t seen since the day she’d returned from the hospital after Dad’s ca
ncer diagnosis.
Val entered saying nothing, passing Dana and going to Talie. Ben was finished with the juice and sitting upright. Val took the baby and patted his back as if she knew he needed to be burped and had arrived just in time. She didn’t even say hello.
“We’ll get through this, you know,” Val said over the baby’s shoulder.
Talie nodded, although she wasn’t so sure.
“Want some coffee, Mom?” Dana asked, coming up behind her.
“No, not yet.” She sat in the chair Dana had vacated.
“I called my doctor’s office this morning,” Val said. “And received very little help for the effort. The nurse hadn’t even heard of fragile X.”
“Maybe you spoke to a receptionist,” Talie said.
“When the doctor finally called me back, even he said he didn’t know much about it. Of course, he’s not a pediatrician, but aren’t there any adults with this disorder?”
“The geneticist said there are probably a lot of adults misdiagnosed, since a cheap, reliable blood test for fragile X hasn’t been around very long.”
“A doctor ought to know a bit about it, you would think.” Val sighed, shifting Ben in her lap and then looking again at Talie. “You seem to be handling this well, honey.”
Talie felt instantly closer to tears after her mother’s observation. So much for the theory that labeling something made it so.
Her mother wiped Ben’s chin; he was drooling again. “I called my friend Ronnie this morning too, while I was waiting for the doctor to phone me back. Ronnie’s been such a comfort to me, Talie; I wondered if you might welcome a visit from her.”
Ronnie, the Elmwood Park expert on grief. Talie shouldn’t be hard on her; the woman had experienced more than her share of loss, since she’d been widowed at age fifty. But that wasn’t what made her a longtime expert. She’d lost her one and only child to SIDS thirty years ago.
Talie was already shaking her head. “No, Mom, not for a while. I just want to . . . adjust, I guess. I’m not up for company.”
“But this would be more of a pastoral visit. You know, from someone who’s experienced the worst of life.”