The Oak Leaves (31 page)

“Having a child born less than perfect isn’t a sign that God doesn’t love me,” Peter said. “It only means we live in a decaying world. Perhaps He designed me for this purpose, Reg, to be a father to such a child. You said it yourself. Life has been too comfortable for me. Maybe He wants to teach me something I can learn only by facing what others would avoid if they could. If life was easy we might not think we need Him.”

Reginald shook his head. “There you are, Peter—more evidence of your delusion that God loves
you
. Loves you like an individual, as if He cares about every little detail of your puny life.”

“He does. He died for me. I’d say He loves me very individually. And you, too.”

“Me! Oh, that’s rich, Peter! God loving me? With a gun in my hand, ready to shoot someone He
does
love?” Reginald lost his smile and held the gun high. Cosima gasped. His taut hand gripped the gun as if he would use it.

Suddenly the door at his back moved—ever so slightly but unexpectedly.

Reginald turned and Peter pounced, taking advantage of the break in Reginald’s attention.

Cosima pulled at Reginald’s free arm, not strong enough to have much impact. He stretched his other arm out, as if to keep the gun from Peter. But Peter’s reach easily matched Reginald’s, and he grabbed the gun away just as the door behind them flung open and both of them nearly toppled to the floor.

A high-pitched squeal sounded. Royboy!

His noise was never so welcome. Peter thrust Reginald away, the gun now secure in Peter’s grip. Reginald fell and lodged against the half-open door.

Royboy pushed again, still unable to get in. “How do you do.”

Peter grabbed the knob, pulling the door wide enough to let Royboy enter. Reginald slid away from them, slouched with his head between his knees.

“Well-timed, Royboy,” Peter said, patting Royboy on the back.

Royboy flapped his hands, speaking words Cosima couldn’t understand. Immediate danger had passed, but she was awash in heat and ice while her limbs tingled as if the blood in her veins had stopped but now rushed to its duty.

Knowing full well her brother preferred a simple smile to any form of touch, Cosima nonetheless cast her arms around him in a hug so tight he couldn’t squirm free. His stiff response steadied her trembling. “Royboy! Well done!” She freed him, adding, “You—you saved our lives.”

“Yes, saved lives. How do you do,” replied Royboy. “How do you do.”

Peter emptied the bullets from the pistol, and they landed in his palm. He looked far calmer than Cosima felt. Her heart still beat so fast she was afraid she might fall to the floor in a heap beside Reginald.

“It’s true.” Peter smiled and placed a hand on Royboy’s shoulder. “God used you tonight, young man!”

With another squeal, Royboy flapped his hands, looking as pleased as if he had understood. And perhaps he had.

47

The doorbell rang just as Talie put Ben down for a nap. By the time she came downstairs, Luke was already headed to the front door. “Expecting somebody?”

She shook her head.

Luke opened the door to Aidan—with Dana at his side. They were holding hands. Smiling.

Talie came up beside Luke, ushering in the obviously happy guests. Her heart thumped, knowing they would be here together like this for only one reason. Aidan hadn’t taken Luke’s advice. “This is a surprise,” she said.

“Surprised that we’re here or that we rang the bell?” Dana asked.

“Both.”

“We won’t stay long; we’re on our way to Mom’s.”

“Do you want to call her and ask her to come here?”

Dana shook her head. “No, we wanted to tell you guys something and then share some of the same news with Mom—sort of a modified repeat performance. And we’re going to drop off Cosima’s journal for her, if that’s okay with you.”

“Sure. It’s her turn to read it.” Talie led them into the living room, where her offer of soda was declined.

“We just wanted to thank you for our talk this morning,” Aidan said. “It helped me put things into perspective.”

“Obviously,” Luke said, his tone skeptical.

“I suppose Aidan told you about what was said?” Talie asked Dana.

“Yes.”

“Luke didn’t want peer pressure adding to Aidan’s decision,” Talie explained.

“We thought as much,” Aidan said. “Thing is, he missed one important point. About life not being about us. Our dreams are puny compared to the plans God has for us. So He’s led us somewhere we didn’t expect to go. I don’t see any good reason either one of us should turn our back on the love God gave me and Dana for each other. We have a challenge, okay. Everybody has them. So we face them with the belief that God put us where He wants us and that His ways aren’t always our ways.”

Talie and Luke exchanged a glance.

“You’re right,” Luke said, then winked at Talie. “What was I saying about new faith . . . being the strongest kind?”

Talie laughed, feeling no need to explain the words to Dana and Aidan. She looked at her sister, knowing she had to apologize to her the way she had to Aidan earlier. “I’m so sorry, Danes. If I hadn’t been so bent on denying anything was wrong with Ben, I wouldn’t have stuffed that journal away. I was trying to control everything . . . even the truth. . . . I never should have kept it a secret—”

Dana held up a hand and Talie stopped rambling.

“You always did want to prepare me for what’s ahead in life,” Dana said. “I’ve just been too pigheaded to listen most of the time.”

“What was it you called it that day so long ago?” Luke asked Talie. “What your dad was, what the journal was to you—a call back?”

“Call back!” Dana repeated the words as if they were familiar. “You did tell me that once, when we were in high school, and I’ve never forgotten. You said you were my call back, so life would be easy for me.”

“Too bad that can’t happen,” Talie said.

“Yeah, well, life’s not supposed to be easy,” Aidan said. “Not on earth, anyway.”

“I guess we’ll have to do what Cosima’s father said: find the blessing through the burden.” Talie caught Luke’s gaze. “I think I’m learning to do just that.”

* * *

Five Months Later

Ben’s squeal rang out in sync with the baby’s high-pitched yelp. Kipp, named for his first American forebear, had found his voice—and his brother, Ben, delighted in it. Ben sat on the floor near the baby’s seat, flapping his hands and laughing over the noise.

Talie looked up from helping Dana address her wedding invitations. Even before they’d received the test results on the blood taken from Kipp’s umbilical cord, Luke and Talie had been convinced Kipp was unaffected by fragile X. His palate was wide and low, his ears small and close to his head. And though he weighed a hefty pound more than Ben’s healthy birth weight of eight pounds, the circumference of Kipp’s head measured exactly in the middle of the normal range. Most important, Kipp already made long-lasting eye contact.

Still, Talie’s gaze often fell on the envelope she’d received weeks ago. It rested on the kitchen desk, just beneath the telephone where stacks of mail tended to build. She had no intention of filing that letter away just yet.

Results from the fragile X test on Kipp Hamilton Ingram: Negative.

She was indeed blessed.

On this day, June the seventh, eighteen hundred and seventy-four, I watched my son depart for America. Kipp, my youngest, revels in the freedom that comes with being the son without a legacy. He always told me a legacy would bring only responsibility and limitation of options, and he was glad to have been born without one. He says America has the greatest resources in the world and its people are the greatest resource of all. He wants to be one of them, to help bring change to a changing world.

I have no doubt our Kipp can do it. Especially with the reminder he carries in his pocket, the sure knowledge that he can survive all and whatever—no matter what he finds in the New World.

Our other children, Branduff, Clara, and Mary, accompanied us to the dock to see Kipp off. I suppose Lord and Lady Hamilton felt this way when they saw their sons travel, wondering if they would ever see them again. My four wonderful children, together for what may be the last time.

I watched my beloved husband, still handsome though near fifty. Never has there been a man more willing to suffer for the Lord our God. And yet the Lord has sent him only blessings, even in Mary, who is simple and yet never without a smile. In her limitations we lean on God’s grace and love, and we are bound together as a family ever tighter each day.

When Mary was three years old and we began to suspect the truth about her, the Lord brought me closer to Him than anytime before. He spoke to me in the apostle Paul’s words: “My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”

I seldom think of the curse anymore. The tongues of the villagers have long since quieted. Beryl, of course, had much to do with that. Even without her early work at the school, I believe her endlessly optimistic smile would have won them over. Her letters are full of challenges and blessings to this day; she will never stop working, not until the Lord calls her to His side.

Nor do I often think of Reginald Hale, who disappeared that night both from our lives and from the society he once coveted. I still pray he will one day discover the individuality of God’s love, if he has not already.

Instead when I recall that I was once viewed as cursed, the Lord brings to mind a verse from His Word, a verse that is etched upon my heart: “The Lord thy God turned the curse into a blessing unto thee, because the Lord thy God loved thee.”

And I praise Him.

A Note from the Author

The Oak Leaves
is a book I thought I would write “someday.”
Someday
when I’d accepted fragile X in my life, in my son’s life.
Someday
when I could find something good to say about being a mom to a permanently handicapped child.
Someday
when I understood why God allows things like fragile X.

As of today, I’ve made some progress toward that someday, but I am by no means there. As I wrote
The Oak Leaves
, I did find good things to say about being a mom to a special-needs child. Like Royboy, my son and so many other fragile Xers offer the smile of God—full of grace toward others. Without fragile X in my life I would never have written this book, never have experienced the joy of expressing some of the emotions God put in all of us—love and disappointment, hope and struggle, side by side. Of course it meant revisiting some of the painful moments in my own life to give my fictional story authenticity: the denial, the diagnosis, and the reeling from that. But it is something many have faced with me. This book is for all of us who’ve survived.

I pray anyone who goes through this diagnosis or one like it will know that joy will eventually return and that you will find a great many things to rejoice in along the journey of life. Most of all, I pray you will know you are loved by the God who created you and your child.

If you would like to know more about fragile X syndrome, please visit www.fraxa.org or www.fragilex.org. I pray for the day the “curse” in this book will be made obsolete by a cure.

Maureen Lang

About the Author

Maureen Lang has always had a passion for writing. She wrote her first novel longhand around the age of ten, put the pages into a notebook she had covered with soft deerskin (nothing but the best!), then passed it around the neighborhood to rave reviews. It was so much fun she’s been writing ever since.

Eventually Maureen became the recipient of a Golden Heart Award from Romance Writers of America, followed by the publication of three secular romance novels. Life took some turns after that, and she gave up writing for fifteen years, until the Lord claimed her to write for Him. Soon she won a Noble Theme Award from American Christian Fiction Writers, and a contract followed a year or so later for
Pieces of Silver
, followed by its sequel,
Remember Me
.

Maureen lives in the Midwest with her husband, her three children, and her daughter’s dog, Bunubi.

Q & A about Fragile X

Why did you write
The Oak Leaves
?

Mostly to bring attention to fragile X syndrome and let others share in this life experience. Even though I believe one of the most difficult things in life is to face a serious diagnosis for your child, it was helpful to me to look at how it changed my life—and try to find something good to say about it. At the time of the diagnosis I questioned many things, not the least of which was why a good God would allow this to happen to those He supposedly loves (my husband, my son, my other children, our extended family, myself). Writing this book helped me to assimilate all the sermons I’ve heard about how God gave us free will in order to teach us to love. Free will brought all kinds of havoc—but without it, we’d all be robots without the faintest idea of what it means to love God or each other. And that would make the world a far different place than one in which we have to face evil and disease.

How much of the story is true? Did you find a journal from your family and learn that fragile X had been in your family for generations?

Although fragile X must have been in my family for at least three generations before it displayed itself in my son, the journal and everything else in The Oak Leaves are pure fiction. However, like Talie, I had recently found out I was pregnant again when my son was diagnosed. I went through the remainder of my third (and final) pregnancy not knowing whether I would have a healthy baby or another fragile X child. (Like Talie’s son Kipp, my new baby turned out to be unaffected.)

In the story, why did it take so long for Talie to receive Ben’s diagnosis?

This is where fact and fiction are more similar than you might expect. In my son’s case, several years ago, it took nearly ten weeks to receive the diagnosis. The test still takes a matter of weeks, although not normally the six weeks or so that it took for Ben (and rarely as long as the ten weeks it took for my son). Not all genetic screening labs do the specific test for fragile X syndrome, and those that do will often wait until they have a sizeable “batch” of blood samples and test them all at once. Another factor that can delay results is having two or three different doctors involved. In both my case and Talie’s, a lab, a geneticist, and a coordinating physician all took time to review the results before passing the information on to the parents.

I’ve met someone with fragile X, and he was much higher functioning than Royboy, the fragile X child portrayed in
The Oak Leaves
. Why did you choose to present someone with fragile X as being so limited when many fragile X children can do much more, especially with language?

I created the character of Royboy to match my own son as closely as possible, because my son is the fragile Xer I know best. But as portrayed in the book through Percy and Royboy, there are varying degrees of affectedness. Many fragile Xers attain good language skills, can read to a limited degree, and even play some sports. This unfortunately has not been the case for my son. He is considered “low functioning” on the fragile X scale.

Is it really possible that fragile X could be passed down from Cosima’s generation to Talie’s without showing up more often than it did?

Yes. Fragile X can be passed silently down through generations in a family before a child is affected by the syndrome. Essentially, there is a variable factor in the DNA of a fragile X carrier that typically increases with successive generations, increasing the risk that a carrier will produce an affected child. Occasionally, though, the factor (and risk) decreases, only to begin increasing again in a later generation.

It also depends on whether the carrier is male or female. As Talie learned, every child born to a female carrier has a fifty-fifty chance of receiving the affected gene. (The children who receive the fragile X gene might be cognitively affected or might simply be unaffected carriers.) A male carrier, like Cosima’s son Kipp, who is himself unaffected by the gene will pass on carrier status to all of his daughters. His sons will be free of the disorder altogether. It’s never been documented that a father can produce a child who is a full mutation (that is, severely affected). Therefore, any children Cosima’s carrier son (Kipp) would have had would have been cognitively unaffected. It could conceivably have taken another two or three generations for the mutation to show up again, and that is what is portrayed in The Oak Leaves: It affected Ellen Dana Grayson, then disappeared until Ben was diagnosed.