“No, she was unexpectedly detained.” Jonathan said, but did not meet the doctor’s gaze.
“This is highly unusual. Would you like to reschedule?”
“No, please. I have my wife’s medical power of attorney.” Jonathan said as he passed the form to the kindly doctor. “We are extremely anxious to know your opinion of the test results.”
“Mr. Oleson,” the doctor began when Jonathan broke in.
“Jonathan, please. I’m a teacher and only my students call me Mr. Oleson.” Jonathan stalled. Now that he was going to finally hear a member of the medical community put a name to what was happening to them he was scared.
He knew from the expression on Dr. Feller’s face that he had the answers. What his doctor would tell him would change the rest of his life.
“I think that it would be best to wait for your wife. I do have a written report here, but I don’t think it is wise that you be the one to tell her alone. If she would have questions…”
“I promise that we will call if she does. Please.” Jonathan looked up to meet the doctor’s gaze. “Please. I have to know.”
Dr. Feller took a deep breath as he carefully considered the power of attorney document Jonathan presented. “All seems to be in order with the paperwork, so if you insist, there is no reason I cannot share this report with you.” Jonathan wondered if the doctor knew his wife was probably not detained. He gave him one last out; one more chance to include his wife. But Jonathan simply nodded for him to proceed.
“Jonathan, I see from the family history you provided, you have a niece with Rett’s Syndrome.”
“Yes, Molly.”
“As you know, affected girls are considered to have normal development for the first six to eighteen months, followed by a period of abrupt regression marked in particular by loss of purposeful hand use and speech. Hand wringing, seizures and growth retardation often accompany a profound mental handicap. And her disability, would you say it was mild, moderate, severe?”
“Molly is profoundly disabled.”
“Well, that struck me initially when reading your file. I’m not sure if you have read, but recently, the gene causing Rett’s has been isolated. You and your wife are both carriers of this gene according to the genetics report in your file. When one parent is a carrier there is a fifty-fifty chance to have a healthy child. When both parents are carriers…” His voice trailed off and he gestured, palms up, with a shrug before continuing. “We could do some more comprehensive testing, but frankly it’s not necessary. As you know, females born with this condition appear normal at birth. Their condition deteriorates over time.”
Jonathan waived away the doctor’s explanation of the disorder, he was all too familiar with it, but he did ask, “I read a couple of different articles and they seem to be fairly contradictory. One study said that since Rett’s only affects females, in vitro fertilization could be used. Once the eggs are fertilized, the embryos can be checked and only male embryos can be implanted.” This was the solution Jonathan had hoped for, but there was one problem. Both of the children he and Lillie had lost had been boys.
Dr. Feller made a triangle with his fingers as he considered what Jonathan said. Thinking out loud again, Jonathan asked, “But Lillie has never been able to carry a child to term. Both of the miscarriages were boys. Rett’s Syndrome affects only girls. How could that be the problem?” At this point Jonathan was playing devil’s advocate. He knew what he had read, but he’d come to be sure.
Jonathan reached into his pocket and took out a sheaf of papers. On top was the article that had driven him here. “Dr. Feller. I read though our medical records, and I found this article on the Internet. What I really need you to do is explain it to me in a language I can understand.”
The doctor picked up the paperwork and scanned it briefly. “It seems you have it all figured out.”
“I thought I did, but I need to be sure. My marriage—my entire life is dependent upon the answer. I have to be sure.”
Dr. Feller took a deep breath and continued. “One of the reasons that it took so long to isolate this gene was because researchers focused on the sex chromosomes for exactly that reason. All of the victims of the disorder were little girls. However, the gene was not located on the sex chromosomes, and the disorder does not affect only females.”
“I’ve never heard of a boy that has been diagnosed with Rett’s.”
“That’s right. Rett’s syndrome in a male child is incompatible with life.”
“Incompatible? You mean they die.”
“I mean the male fetuses do not survive pregnancy to be born. They are most often miscarried—“
“In the first trimester, sometimes the second.”
“Yes,” Dr. Feller agreed.
Jonathan heard the door on his life slam, as he nearly whispered, “So, no chance.”
“Well, many couples facing problems with genetic abnormalities choose to use donor sperm.”
“From a sperm bank?”
“Yes, or sometimes a friend or relative, although that is less common. More parents prefer the anonymity of a random donor.”
“How would we know that person would also not be a carrier?” Jon asked. “Would there be testing involved?”
“Not usually, but that could certainly be arranged, I’d think. It is practically unnecessary as it is very rare for a donor to also be a carrier, three or four thousand to one. The odds are in your favor that the child would be fine.”
“That’s the only way?” Jonathan asked.
“No, of course not. A donor egg could be used but that is exceedingly more difficult as far as the donation process for women. They must take daily injections and undergo a surgical procedure. Eggs cannot currently be preserved, so no 'egg banks.' In nearly all cases the donor is a friend or relative.”
“What is this I hear about embryos that have been frozen for years?”
“Those are embryos, already fertilized, not eggs, if you will.”
“So in your medical opinion, there is no way for Lillie and I to create a healthy child?”
“Conceiving doesn’t seem to be a problem and assuming that Lillie could carry a healthy fetus to term, I believe that she could deliver a healthy child. But you are correct. With the current state of research, I fear there is no chance for you and your wife to both genetically contribute to a healthy child.”
Jonathan couldn’t speak. He sat opposite the doctor and blinked rapidly for a moment. Everything they’d worked for came crashing down on top of him. He sat, pinned beneath a thousand tons of broken dreams just as surely as if he had been trapped by the rubble of a large building or suspension bridge.
He’d known in his soul it would ultimately come down to this. He’d planned to adopt instead of pursuing infertility treatments, because he knew one day their lives would come to this precipice. Lillie would have to choose between him and her child, and damn it, that was not a decision anyone should ever have to make.
The kindly doctor, realizing Jonathan’s distress came around his desk and placed his hand on Jonathan’s shoulder. “Mr. Oleson—Jonathan. This doesn’t mean you will never be a father. Fatherhood isn’t sperm and genetic material. My daughter is an attorney who goes after deadbeat dads. A genetic link does nothing to instill a sense of responsibility to parenthood. Being a father is about commitment. Putting the needs of another before your own. Loving someone more than you love yourself…even more than you love your wife, but don’t tell mine I said so.” The doctor smiled.
“That’s easy for you to say. You have a daughter, the attorney.”
Dr. Feller said with a wink and a smile as he leaned across his desk and reached for a picture frame and handed it to Jonathan. Beaming, the doctor pointed at three lovely Asian women. “Laura Mai Li, Sarah Rei San, and Amanda Sun Le.”
Jonathan looked closely at the photo as Dr. Feller explained, “My daughters are from Korea. So you see Jonathan, I know everything about it so it is very easy for me to sa
y.”
“Tell that to my wife,” Jonathan answered and the doctor looked confused. The husbands were often the ones who needed convincing.
“Thank you, doctor.” Jonathan stood abruptly and offered his hand to the kindly doctor. He needed some air. He needed to digest all he had confirmed and the new information he had learned. “Do I need paperwork or something to take to the ladies in the office?”
“No, no charge. I’m just sorry I couldn’t offer you better news.”
Jon was again stunned. Genetic consultations cost thousands of dollars. “I don’t know what to say.”
“Don’t worry about it.” Dr. Feller handed him a card. “Have Mrs. Oleson call me if there is something she doesn’t understand or wants more information about.”
Jonathan thanked the doctor again and somehow found his way to his car. He glanced at his watch with a start to realize it was after four o’clock. He had told Lillie he was attending an in-service in Indianapolis, instead, he had traveled into Chicago to meet with the famous doctor. Traffic would turn the normally hour and a half hour drive home into closer to three if he didn’t hurry.
As he drove, the reality slowly began to sink in. There would be no children for Lillie and him. He would never lay his hand or his cheek on her rounded abdomen and feel his baby kick; never hold her hand while she was in labor with his son or daughter and wonder if their child would have his ears or her nose.
He didn’t know how he could ever tell Lillie. It occurred to him Lillie might view this as good news. They knew the problem and it could be solved. To an extent. Lillie would be on the phone making an appointment for inseminations before he even had a chance to digest what was happening.
He needed time. He didn’t think he could parent a child that belonged to Lillie’s alone. His mind told him it shouldn’t make a difference, but his heart—his heart screamed otherwise.
Did he have it in him to stand by her through the process, the pregnancy—knowing the child she carried belonged to someone else? Lillie would say it didn’t make any difference.
He’d been willing, even anxious to adopt a child. They would both be starting on the same page so to speak. But this? He just didn’t know. To him it mattered.
The relationship, or lack thereof, with his father had caused deep seeded chasms of doubt in Jonathan in regard to his ability to be a good father to any child. Intellectually, he knew the neglect he felt growing up, meant he would know how important it would be for him to be active in the lives of his own children. But from time to time the panic would set in and he was sure he would fail.
Jonathan noted his gas gauge was nearing the red line. He swerved his Jeep across several lanes of traffic to exit to the toll plaza combination fast food restaurant and gas station.
He filled his tank and grabbed a very late lunch which he tossed, along with the receipts onto the passenger seat with the rest of the clutter. His hamburger and fries kept his attention for a while but it wasn’t long before his mind wandered back to his wife.
For a moment he considered not sharing what he had learned from Dr. Feller and push harder for adoption instead. But he knew it would only be a matter of time until Lillie found out what he’d discovered. His wife was tenacious, and she would not stop searching until she had an answer. Moreover, Lillie would want to continue trying to get pregnant, and it would be impossible to persuade her to wait.
He knew he shouldn’t push her into adopting. It wasn’t what she wanted. She wanted a child of her own, one who was a part of her devoted father whom she had lost to a heart attack when she was in college and the mother and sister she had never really known.
If not for him and his insecurities, Lillie could have all of that. She would have the experience of her child growing within her, the excitement of the birth and the first days at home. She would nurse her child in the rocker her Grandfather made, where she herself had been soothed to sleep. Picturing it all, it almost seemed possible. Almost, except for the burning doubts that wouldn’t go away.
He tried to picture what would happen when he told her the dream of their child had ended. He could see the devastation in her eyes as he drove. Oh, he knew she would accept it eventually. They might even adopt in time, but he would have to live knowing what she had given up for him. In the end, it would be their undoing. Not Lillie’s shortcoming or lack of understanding, but his.
It would be a ticking time bomb in their marriage. He would always be waiting for the other shoe to drop. Eventually it would be too much. Only maybe by then there would be a child involved. When it came down to brass tacks, he simply would not risk treating a child as he had been treated. The price was too great and he would not subject a child to missed birthday parties and the mortification of not knowing which side of home plate to stand on like the other boys.
He pulled into their driveway, and he sat in his jeep looking at their home. He wondered if this was what it was like to find out you had a terminal illness. His life was being taken from him, and he was powerless to stop it. He wanted to spare Lillie the pain he knew he would be inflicting, and he did not want their relationship to suffer a slow painful death that would further injure them both.
He cruised into the driveway, put his Jeep in neutral and stepped on the emergency brake. He didn’t move until the streetlights kicked on, sounding like a hive full of bees and startling him from his reverie.
He looked up to see his wife framed in the front window, wondering why it was taking so long to come into the house, no doubt. Gathering his courage, he took a deep breath and trotted up the front steps to join her.
Chapter Ten
Lillie slid out of bed quietly and pulled the covers up to her husband’s chin before gently closing the bedroom door and heading to the bathroom for a quick shower. She didn’t know what time he’d come to bed the night before, except she knew the light in the den burned long in the wee hours of the morning. Although her mood was lifting, she still felt the creeping exhaustion from time to time. She’d gone to bed before eleven, in preparation for her early morning appointment to show Donna’s house. With any luck, there would be an offer and they could spend the evening celebrating.
Then the real work would begin. As a Realtor, she negotiated the contract, calculated the net return for the seller, assured the buyer qualified to purchase the home, ordered surveys and title work and somehow get both parties to the closing table within the month.
Racing down the steps with her commuter mug of coffee a half an hour later, she realized Jon’s jeep was parked behind her sedan in their single, narrow drive. Glancing at her watch, she saw there was little time to juggle vehicles. Lillie decided to drive the jeep. She did not often commandeer her husband’s vehicle as he had a penchant for driving it around town with the doors and top removed. Today, all were present and accounted for due to his trip out of town yesterday, she supposed. She decided to save the time it would take to get in and out of two cars and just take Jon’s. She was meeting the clients at the property, so she need not worry about squeezing them into the nearly non-existent back seat.
As usual, the Jeep looked like the inside of a waste paper basket. Fast food wrappers, pop bottles and sheet music littered the floorboards and passenger seat. Lillie backed quickly out of the drive. As she accelerated away from the house, she grabbed several credit card receipts before they fell off the seat and joined the mess on the floor. Her husband was notorious for using their debit card for purchases then forgetting to give her the receipts to enter into their check registry.
Lillie threatened him more than once for wreaking chaos with her meticulous record keeping. She excelled at real estate because it called on both her outgoing personality and her attention to detail in equal measure. Her reputation grew year after year because of her ability to key in on her buyers needs and match them with the right home. The wonderful recommendations of her clients brought Lillie as much work as she could ask for.
Unlike most Realtors, Lillie accepted listings
only from past clients and referred other listings to another agent affiliated with the same brokerage house, who would in turn pay her a referral fee. Most real estate agents would rather list a property and sit back and wait for another agent to sell the house, but not Lillie. She enjoyed the challenge of the hunt so she worked primarily as a buyer’s representative. This could be more labor intensive as she spent many a weekend or evening squiring buyers to and fro.
In theory, this should leave days free for children, but she barely eked out enough time for housework and most weeks called a service and hoped Jon didn’t notice. They never discussed it, but she was sure he wouldn’t care for her spending money on a cleaning crew. Not that he would object, really, he just would be hurt because he could not provide her with the cost of the help himself. Jonathan tended to be extremely insecure when it came to money. While she would not deny it if he asked her point blank, she did feel justified in hiding the issue from her husband. The way she saw it, she was busy and she liked a clean house. He would likely see it as a personal affront to his manhood, and she would rather not bring it up.
The disparity between their incomes increased year after year and her income well surpassed Jon’s. It threw him into a funk every April when they signed their joint tax return. She didn’t think he’d ever be comfortable with it. The house they were building was being paid for in part by their large savings account. Jon was old fashioned and insisted they live within his salary with the exception of her modest car and clothing which Lillie considered business expenses.
In truth, Lillie didn’t mind living simply. She didn’t want an extravagant lifestyle. She had traveled extensively as a child and teenager with her father and Aunt Catherine and Uncle Rand. She had been everywhere and seen everything. She and Jon were both out-of-doors people and preferred a canoe and a tent to a seven forty-seven and a five star hotel. They traveled often to the Boundary Waters area of northern Minnesota and had in fact honeymooned there among the ten thousand lakes and millions of pines.
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