We're excited to bring this novel by CatholicMom.com contributing author Sherry Boas to our readers, one chapter at a time. Each Sunday at 9 AM Pacific, a new chapter in Until Lily will be posted. We thank Sherry for her generosity in sharing this book here and encourage you to check out the other books in the Lily series.
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Jen never called to tell me when Lily was born. The first time I heard from her was the following Christmas. I e-mailed her a Season’s Greetings and she e-mailed me back a nativity e- card and pictures of the kids. For several years after that, we called each other on holidays and she e-mailed pictures of the kids on their birthdays. All correspondence was cordial. Jen had always built me and Jack up in the minds of the children as something special. We always tried to live up to that. Since our parents had passed away and there was no other family, it was up to Jack and me to spoil them. It wasn’t difficult. Nice children’s books were always coming into the used book store I owned, and I would wrap them up and Fed-Ex them, many times on no special occasion. I’d always include in the parcel a little something for the kids to play with and a treat to eat. Peanut M & M’s were Jimmy and Terry’s favorites and they were hardy during shipping.
One spring, Jen invited us out to Burbank for a visit. When she picked us up at the airport, I almost walked right past her. She had gotten so thin, and the children were all so big. I couldn’t believe so many years had passed, and I was the only one who hadn’t changed. Lily, a plump four-year-old, was the first to give me a hug. She had the classic Down’s features – a flat-bridged nose and small eyes slanted upward with fleshy folds of skin on the inner corners. I had always thought all people with Down syndrome looked alike, but I was struck by how much Lily looked like Jen with her round cheeks and pointed chin. She had shiny dark hair fashioned into pigtails that reminded me of Jen’s kindergarten picture, which Mom had always kept on the mantel, along with my second-grade portrait. When I say always, I mean always. The realtor who did the walk-through at the house after Mom and Dad died told us we had to take the photos down to get maximum dollar. Apparently, prospective home buyers only want to envision their own family on the mantel, and pictures of someone else’s children distract them from the fantasies you want them to have about how dreamy it would be to live in your house.
As we waited for our baggage, I watched Lily try to befriend an elderly man filling out a form, which from the look on his face, must have been a missing luggage report. She smiled at him and reached her hand toward his. He seemed to resent that she had barged into his entitled misery with her irresistible charms, but he finally conceded to her hand in his and managed a slight smile. You could no more avoid the radiance of that child’s face than you could stand blinking up at the sun and forbid its rays to warm you.
Everyone fought over who would sit next to Jack on the way to Jen’s house. We worked it out so Jack would sit in the middle of Terry and Jimmy in the back seat of the minivan. Lily got the consolation prize. She got to sit by me in the middle row. She kept looking over at me, smiling and giving me a breathy “hi,” every couple of miles. Meanwhile, Jimmy and Terry competed for airtime as Jack asked them questions. Favorite sport, favorite subject in school, favorite TV show, favorite movie. Jen sat in the front seat by herself, driving. She only spoke to interject an occasional “yeah,” or “uh-huh,” when the kids would say, “remember that, Mom?” I leaned forward a bit and noticed Jen’s crow’s feet and sagging jaw-line. I thought her skin hung quite loose for a woman of 44. She’d been running too hard.
“So, Jen,” I said. “How’s work? What have you been writing lately?”
“Oh, it’s fine. I’ve been taking some time off.” She glanced in the rearview mirror. “But I just found out I won a press award for a story I wrote last year.”
“Really? For what?” I asked.
“A feature on a woman whose husband was shot on their wedding anniversary.”
“Wow,” I said. “So you’re still covering cops?”
“No. I moved to features a few months ago. It is just a lot more manageable.”
“Congratulations on your award, Jen,” Jack said from the back seat.
“You lose!” said Jimmy, shoving Jack playfully.
There had been a lull in the conversation back there since Jack suggested playing the “quiet game” following Jimmy’s and Terry’s argument about whether pterodactyls picked the flesh off of carcasses and ate it.
“Did the award come with any money?” I asked Jen. “A whopping $100 and a wall plaque.”
“Let’s play again,” Jimmy said. “This time, whoever wins gets 100 bucks.”
“No, I don’t want to play,” said Terry.
“And how’s the store?” Jen asked.
“It’s still there,” I said. “Nothing new to report.” There was never anything new in the used-book business. “So, when am I going to be stocking my shelves with your best-selling novel?”
I’d always admired Jen’s writing genius. Maybe even envied it. She was a true wordsmith. Me, I just knew good writing when I saw it. But Jen had an innate gift, for sure. Mom used to say she’d find me with my nose in a book all the time and Jen with a pencil in her hand. She started writing a novel when she was eight, just for fun. It was a chapter book about her and our dog, Dusty, catching a robber while house sitting for neighbors. Jen and I found it in the attic after Mom passed away. We were both surprised how good the writing was. I always wondered how she knew how to write, since she hardly ever read. She had very poor eyesight and double vision and the words just wouldn’t sit still on the page. She told me when we were kids how she used to fake it in class during silent reading assignments by watching when the student next to her turned the page and then turning hers too. And she used to cheat on book reports by just reading the back cover and the first and last chapters. She never read a text book all through high school. She said that very rarely – if ever – did something that wasn’t spoken of in class show up on a test, and thus she managed straight A’s. It was not until she reached college that she had to start reading. The first semester she decided not to bother purchasing the textbooks and nearly flunked a geography class. The next seven semesters the student book store got all her money and she pulled a 4.0 every time. It required quite a time investment on her part because she was a painfully slow reader. I’d heard her say she could write faster than she could read, which might not have been much of an exaggeration, because I’d seen the quantity of work she produced on deadline in a day.
“Uncle Jack, can you and Aunt Bev take us to see Wanderloo?” Jimmy asked. We were sitting at a stoplight in front of a 16-theater AMC. “I really want to see it.”
“It’s PG-13, Jimmy,” Terry said, rolling her eyes.
“So?” he countered. “Mom let us see Indiana Jones.”
“That’s not PG-13, genius,” Terry said contemptuously.
“Yes, it is.”
“No, it’s not.”
“It’s PG,” Terry shouted.
“Drop it, you two,” Jen said, raising her eyebrows in the rear-view mirror. Then her face softened. “And how’s your job, Jack?”
“Not nearly as exciting as yours, I’m afraid,” Jack said.
“Oh, being a reporter isn’t all that exciting either,” Jen said.
“No, I was talking about your other job,” Jack said, grinning, pointing his nose at Jimmy, then Terry.
“Oh, yes, that one’s exciting,” Jen said, without a tinge of irony.
Jen and the kids showed us to Terry and Lily’s room, where we would be staying for the week. The double bed was dressed in lime-green and shared by two girls who clearly loved horses, dogs and small people. On the floor was a large pile of Polly Pockets and accessories that had just been dumped out of a canvas cube. The white shelves were cluttered with My Little Ponies, Littlest Pet shop bobbing-head animals and Equestrian books. Amidst the half-dozen horse posters, a crucifix and a picture of the Virgin Mary, I could somehow make out that the wall was baby blue.
“Honey, I asked you to make sure your room was clean,” Jen complained to Terry.
“I did,” Terry answered with a furrowed brow. “Lily made that mess.”
“It looks wonderful in here, girls,” I said. “Thanks for lending us your room. But where are you going to sleep?”
“Oh, Jen,” I said. “I don’t want to put you out like that.”
“No, no,” she said. “I enjoy sleeping with my girls. We’re going to have a slumber party, right girls?”
“Um-hmmm,” Terry said, smiling. Lily just looked at Jen, expressionless.
“No fair,” said Jimmy. “I don’t get to sleep with anyone.”
“You can sleep with us too,” Jen said.
“Mom, it’s going to be too crowded,” Terry whined.
“Oh, good grief, Terry,” Jen said. “It’s a king-sized bed.”
“And who are these little people?” I stooped down and picked up a Polly with yellow hair and hot-pink lipstick and held it out toward Lily.
She took it from me and smiled slightly. “What’s her name?” I asked.
“Lil,” she said.
“Oh, her name’s Lily too,” I confirmed. “Yeah,” she said.
“Well, where are all the cool boy’s toys, Jimmy,” Jack said.
“Oh, come on, Uncle Jack,” Jimmy said. “See my room.” The boys went to the room next door.
“I can see you still like horses, Terry,” I said. She nodded and smiled.
Jen put an arm around her. “She has always loved horses. One time, when she was just little, maybe about 4 or 5, we were driving by a pasture and I glanced back at her and she was staring out the window with these big tears in her eyes, and she said to me, 'Mom, I have horses in my soul.’"
“I want to live out in the country some day and have my own horse,” Terry said. “Mom wants goats.”
“Oh, you’re going to be a goatherd someday, Jen?” I said, nudging her arm with my elbow. “I never knew you had such high aspirations.”
“Just craving the simple life,” she said, squeezing Terry in a little closer.
The following night, after the kids went to bed, Jen set Jack up in the family room with the cable television remote and a bottle of beer. Then she brewed a pot of tea and told me she needed to talk to me. Upon taking the first sip, she blurted out three words that would eventually save my life.
“Bev, I’m dying.”
“What do you mean, you’re dying?”
“I have cancer.”
From her lips, to my stomach. The words punched me hard. “Cancer? What kind of cancer?”
“Metastatic Melanoma,” she said. “What is that?” I asked, appalled.
“Skin cancer that has spread,” she said. “To the other organs.”
Her eyes wandered around on my face and she bit her bottom lip, waiting for a response. I couldn’t respond because I didn’t believe her. Well, that’s not true. People don’t lie or joke about this kind of thing. It’s not that I didn’t believe her. I didn’t believe it. Whatever it was that was trying to create this reality – I didn’t believe it.
“Not breast cancer?” I finally said. That was the first clue that this couldn’t be true. Mom had died of breast cancer, not skin cancer. Jen and I were at risk for breast cancer. That’s what we would die of, if one of us was dying.
“No, Bev. Not breast cancer.”
“Well, what do you mean you’re dying? There’s no treatment?” See, that was another thing. People you know don’t just say they’re dying and then die. That’s what soap characters do. Real people have some sort of hope through medication or surgery.
“No, Bev. It’s spread. I don’t have long.”
“Three months, maybe six.” There you go. What a ridiculous notion. How can a disease take a perfectly healthy person that quickly? Although she did look skinny and her color was not right. I noticed it when she took her makeup off the night before. She had a gray tint to her skin.
“There’s got to be some sort of treatment they can try,” I said. “Experimental drugs. Alternative medicine. Something.”
“No, there’s nothing. The cancer has spread to my lungs and brain. That’s pretty much a death sentence.”
“How long have you known?”
She stretched her torso out and took a deep breath. “I went in a couple of months ago for a swollen lymph node. In my groin.”
I heard myself draw a long breath, but it didn’t come out. I could feel my heart beating against the walls of my chest like the space inside me had suddenly grown too small. What was I going to do without my only sister? My only remaining family member? I would be without any remnant from my childhood.
And then, something in my brain flipped a switch, and the telephoto lens that had been documenting my small world crashing in on me, zoomed out to a wider angle. There in that color-less frame, muted by the shadow of grief, stood the children.
I heard myself let out a small gasp. “Do the children know?”
“They know I’ve been sick. They don’t know the latest prognosis. I’m waiting for our pastor to return from a pilgrimage to the holy land so he can be here when I tell them. He’s the one who baptized all of them and gave Terry her First Communion. I figure he’ll be able to answer their questions better than anyone else I know. I wish Mom and Dad were still alive. I know Mom would know what to say.”
Our eyes couldn’t contain the tears any longer. I reached across the table and grabbed her hand.
“I’ve been so scared to tell them.” She forced the thin words through a crackling throat. “I’m especially worried about Jimmy. He’s been so afraid of me dying. Even when there was no reason, he would tell me he’s afraid. I’d always promised him I wouldn’t die. I hope he doesn’t hold it against me.” She began to sob and I held her head tight against my chest. “I don’t want to leave them. I would do anything to stay with them.”
“They’ll understand that,” I whispered. “They’ll know this is all out of your control.”
“I don’t know what I can tell them to make this not seem like the nightmare that it is.”
“They just have to be assured that they will be taken care of.”
I reached for a napkin and gave it to Jen for her eyes. Then I took one for myself. The picture in my head showed only the three children, stunned with sorrow. There was no one else in the frame.
“Who is going to take care of them?” I asked.
Jack and I never had kids and it never bothered us. We grew accustomed to our carefree ways and never considered adopting. We didn’t even get a dog because we didn’t want to be tied down. Jen, on the other hand, was so afraid she’d never find a man and have a family, that at the age of 35, she stood in front of a Superior Court judge and gave her life to two complete strangers, aged 1 and 2.
I know Jack and I were not ideal, not by a long shot. But as the only surviving relative under the age of 82, Jen had no choice. I had to be honest right out front and tell Jen we were not able to care for her children. We were not set up to handle Down syndrome. Heck, we weren’t set up to handle a child of any sort. Anyone who could do the math could figure that out. I was 49 and Jack was 53.
“Don’t worry about your age,” Jen said. “At least you won’t be going through menopause when the kids are going through puberty.” She was apparently trying to lighten the conversation, but I felt like my throat would burst. “Can you imagine how much fur would fly with that amount of hormonal imbalance going on?”
Because she was older than most mothers, she told me, she knew she would be going through menopause before her kids left the house. She said she had prayed in advance that she wouldn’t get moody and take it out on her children. She told God “give me hot flashes, a thick waist line, incontinence and insomnia, but don’t let me turn into a monster.” So it didn’t surprise her, when early menopause hit, that she would awake every night on wet sheets with her drenched night gown sticking to her like a newly applied layer of paper maché. Never, she said, did she experience a moment of irritability attributed to hormonal changes.
I never even asked Jack what he thought about Jen’s proposal because I knew already what I thought.
“We need to make sure to do everything we can for those kids,” Jack told me as he held me in bed that night. “Tell Jen. We’ll do everything we can.”
Jack was a good man that way. He couldn’t stand to see anyone suffer.
I had a long cry in the dark until Jack’s chest hairs were soaked.
“Bev,” he whispered into my hair. “If you’re saying no to Jen because of me, don’t say no.”
“It’s not because of you, Jack,” I said. “It’s because of me.”
I tried not to feel guilty about the decision not to take on the kids. It was, after all, Jen’s choices that had led to this point, not ours. I didn’t want to live the life she had set up. Jen was a bit hurt, I think, but she understood me. I think she knew that she and I were two different people. She was an extremely accepting person and she was able to treat my self-centeredness as if it were my – for lack of a better word – handicap. It’s like science fiction writer Robert Heinlein once said, “Never try to teach a pig to sing. It wastes your time and annoys the pig.” I think Jen knew she might as well have asked a pig to learn opera. I don’t think she cared too much about annoying the pig, but she certainly could not afford to waste any time.
Jack and I flew home three days later with the understanding that we would be back within the next few months to say good-bye. In the meantime, we would do all we could to help sort out the children’s future. As the cancer made her weaker and the day of her passing closer, Jen began to call and pressure me into taking the kids.
“Oh, Jen, Honey, I thought we had this worked out,” I told her.
“Bev, you know I wouldn’t ask this of you if there were any other way,” she said. “I just don’t know what else I can do. My kids are everything to me. I don’t like to beg, but I will for my children. I have been reduced to nothing, Bev. I have nothing to offer and only the world to ask of you. So I’m asking. I’m begging, actually. What else can I ...” If the pent up tears hadn’t choked off the sentence, I would have had more time to think. I couldn’t get the word “no” out. But I couldn’t say yes to a lifetime of misery.
“Just give me some time to think, Jen,” I told her. “I’ll come up with a solution. You know I’ll do the best I can for them. It’s not that I don’t love them. I do. It’s just that ... Just let me think, Jen. Let me figure something out.”
“Please don’t take too long.” Her voice was shaking and I could picture her hands trembling as she held the phone to her ear.
I never told Jack about the phone calls. I was afraid he would try to pressure me too. I called Jen a few days later with a plan I had devised. I could try to track down Lily’s father, who had dropped out of sight soon after she turned one. He had come to visit three times, once with a large pink teddy bear, once with a toy phone that had dedicated lines to five Disney Princesses and once with his new puppy, which provided for some great photo opportunities. He was never named on the birth certificate. Jen didn’t want to have a permanent tie to him. She wanted autonomy in raising her children the way she thought was best, and child support wasn’t worth the risk of having someone meddle in or do some kind of damage to the life she was trying to build. But now that Jen was dying, there had to be a paternal grandmother or aunt or someone who could take Lily. Raising one child, even one with Down syndrome, would not be as daunting as a sudden house full. I could take Terry and Jimmy and they could have Lily. We could keep the children in touch with frequent visits. This plan would keep everyone out of foster care. Terry and Jimmy would have each other. And Lily would have a much easier time adjusting to the loss of her family members than other children, I reasoned. Her thoughts were simpler, her memory shorter. She would quickly forget the tragedy she just stepped out of and settle somewhat smoothly into a new life. I thought it was a worthy plan. But Jen protested my trying to contact anyone on the father’s side of the family, though she wouldn’t tell me why. “It’s just not an ideal situation,” she said. “Trust me Bev. Leave it alone. Just promise me you’ll leave it alone.”
Whoever he was, where ever he was and whatever wrong he had done, I wasn’t going to find it out from Jen. She remained tenaciously tightlipped.
Meanwhile, she directed my attention to what she viewed as a large body of evidence that caring for Lily is no different from raising any other child.
“I mean, I forget that she has Down syndrome,” Jen said. “Like one time, my friend whose baby is a couple years younger than Lily told me she was worried because her baby bangs his head against the high chair during meals. I told her 'Oh, don’t worry. Lily used to do that.’ When I hung up the phone, I thought, 'Oh my goodness. How is that comforting to that poor woman?’ I had just reassured her that her child is exhibiting the same behaviors as a child with mental retardation.”
Jen and I laughed like we hadn’t together for a long time. “Yeah,” I said. “I’m sure she slept well that night.”
“Yeah,” Jen was still chuckling. “But see, to us, Lily is normal. So whatever she does is normal – at least for Lily.”
At the time, I could not figure out what Jen was thinking. Why was she bound and determined to give her kids to someone who didn’t want them? Looking back on it, I realize she had more faith in me than I had in myself. But how? How did she know I would rise to the occasion, that I even could rise? How did she trust me with her most precious treasure, knowing I didn’t value it the way she did? If I would have been her, I would have sooner taken out a classified ad in search of a stranger to take my children than to give them to someone who has made it as clear as I did that I didn’t want them. Well, it’s not that I didn’t want them. It was more that I was scared of them. I was afraid of what they would take away from me. Children don’t always bring out the best in you, but there’s no way you can get them to adulthood without making at least a few major adjustments in yourself. This I instinctively knew when I said no to those children. I wasn’t interested in self improvement.
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Copyright 2017 Sherry Boas
About the Author
Sherry Boas is author of the Lily Series, which has grown into a beloved collection of novels whose characters’ lives are unpredictably transformed by a woman with Down syndrome. The former newspaper reporter and special needs adoptive mother of four is also author of A Mother's Bouquet: Rosary Meditations for Moms, Billowtail, Victoria's Sparrows, Little Maximus Myers, Archangela's Horse, and Wing Tip. She runs Caritas Press from her home office in stolen moments between over-cooking the pasta and forgetting to dust the chandelier. Find her work at CaritasPress.org.