Warning: Almost as Long as the Last One

(To follow along in order: Preface, Part 1, Part 2. This is another long one, but we're almost at the end of the series! One more piece...)


“Of Course”

I was seven when my mom whispered excitedly to me that she had something to tell me. “I might be pregnant!” she said. Her eyes sparkled. I wasn’t to tell anyone yet, not until the doctor confirmed it. But I could read in her face that she herself was already sure.

With two brothers already, I had been praying for a sister for years. I wasn’t really surprised to hear that a baby was on the way. I had known she was coming. And this was going to be “her.” The one I had been waiting for. This baby was going to grow up into someone I would share clothes with, scream at occasionally, talk about boys with, and look out for at school. We would bond, in that special way that only sisters have. I was certain of it. After all, I had prayed.

I announced excitedly at school that my mom was going to have a baby, but everyone else’s moms had already had babies, and no one was really very impressed. Of course, they couldn’t begin to know how much this baby already meant to me, how momentous this occasion really was, so I didn’t think it was entirely fair to blame them for their lack of enthusiasm. How could they understand?

My brothers and I took “big sibling” classes at St. Luke’s hospital, learning what to expect with a new baby in the house. They gave us a little book, a baby book for siblings. It had pages to draw pictures of ourselves and our family, pages to draw pictures of the new baby when she came, and fill-in-the-blank stories to tell about how much she weighed, what she looked like, and what her birth was like. I couldn’t wait to fill it up. As each month passed, it seemed like the day would never arrive. My mom looked beautiful to me, in her home-made floral-print maternity dresses. I knew that the bigger she grew, the closer the day approached when I would see this little girl face to face.

An elderly woman from church told my parents she had a pretty good feeling about this child. “Lindsay is going to be so disappointed,” she said. “You’re in for another little boy,” she prophesied. My parents decided not to tell me.

My mom packed a suitcase. And we waited. And waited. And waited. Finally, the doctors decided to induce labor, so my parents scheduled a birthday for my new baby sister. They had already made arrangements with Pat, a friend of my mom’s, and my brothers and I packed our own overnight bags and headed over to her house to wait for the phone call from the hospital. We watched movies, and Pat let me stay up late, because she understood when I couldn’t sleep. In the morning, we made cookies, and Pat let us nibble on the cookie dough while we waited for them to come out of the oven.

Finally, the phone rang. Pat ran to answer it, and after a minute she handed it to me. My dad sounded tired, but very happy. “It’s a girl!” he announced. I jumped up and down and laughed gleefully. “Of course it is,” I thought. But I didn’t say it. “I’m going to come get you guys and you can come up here and visit your mom and your new baby sister, Rebekah Karen.” I went to wash my hands. I wanted to be ready.

When we got there, we had to wear little blue booties over our shoes, and a blue smock that tied in the back over our clothes. My mom looked more tired than I had ever seen her. They had had to take the baby by cesarean section, in the end. The petossin hadn’t quite cut it. But she was content, because snuggled in her arms was a little girl, with a perfectly beautiful button nose, tiny tiny fingers tucked in infant mittens, itty bitty toes hidden by fuzzy pink hospital booties, and silky wisps of light, coppery-brown hair. She was sleeping then, so I didn’t discover the exquisite beauty of her dark blue eyes until later.

My dad looked so happy. I can’t clearly remember a time before or since that I’ve seen him look like that, a mixture of joy, pride, and exhaustion. My mom let me hold the soft, pink bundle, and it seemed to me that she weighed practically nothing. Actually, I was later to understand that she had been a huge baby, weighing in at nearly ten pounds and measuring twenty-one inches. She looked so small in my eyes, though. I was afraid to hold on too tightly, in case she might break, and afraid to hold on too loosely, in case I might drop her. I handed her back to my dad after only a few minutes.

My brothers, aged two and four at the time, were as fascinated by her as I was. But they weren’t quite sure they understood this undersized person. They crowded in to look at her and touch her, but didn’t want to hold her. They bounced around on the hospital bed until Dad decided we all needed to go home and let Mom and the baby rest.

Rebekah moved into the tiny nursery just off of the master bedroom the next day. I was so happy. Our family seemed complete. But my mom was worried. Beginning in the hospital, Rebekah would have frightening episodes that we eventually called “choking spells” that would periodically cause her to choke and gasp for air for no apparent reason. “Something’s wrong,” my parents told the doctors. But the doctors never saw her do it, so they told my parents not to pay much attention—that she’d grow out of it. We watched as her small body stiffened, her eyes focused on some point far away, and her arms trembled. “That’s looks like a seizure,” my mom said. “Something’s wrong.” No doctor ever saw it, so no doctor would believe it. But worst of all, as the months went by, Rebekah began to look skinny. My mom went anxiously to the doctors again. “She’s not gaining weight like my other children did,” she tried to tell them. They told her all children developed differently. “I’m telling you, she’s thin,” she insisted. “Something’s wrong.” They told her not to worry.

When choking spells began to turn her face blue, my parents gave up on local doctors and took Rebekah to the research hospital at the University of Iowa in Iowa City, an hour and a half away. The boys and I stayed with Robin, another friend from church. We played all day with her children, and hardly noticed how late my parents were. My dad called and Robin said things like, “Don’t worry about it. I’ve got everything under control. Stay as long as you need to. Roger and I will be praying,” and didn’t give me the phone. I helped her make home-made noodles for a spaghetti supper. We made garlic bread and green beans and carrots too, and spent the meal laughing and telling knock-knock jokes to each other.

My dad showed up at the door at about ten-thirty that night. We had expected him around four. He looked worn out and defeated. Mom and Rebekah had had to stay in the hospital overnight. He told me that at first, the doctors didn’t know what to tell us, but as soon as one had left the room, Rebekah had started choking. They called him back in immediately, and when the spell was over, he said, “This child is not leaving the hospital tonight. Something is very, very wrong.” My mom told me what a relief it had been to have someone finally agree with her. But they were scared.

Doctors ran a battery of tests. Dad went back to the hospital, and we stayed overnight at Robin’s house that weekend. Finally, he and my mom brought Rebekah home with a diagnosis: a form of leukodystrophy, a progressive disease that attacks the white matter in the brain. They explained why she wasn’t gaining weight: the part of her brain that controlled swallowing was damaged, so she was barely getting anything down. My mom was devastated by the idea that her baby had been starving to death. They inserted a feeding tube down Rebekah’s nose and into her stomach, and my mom bought a breast pump. But after months of low consumption, she was only producing a half an ounce of milk a day. Our baby had been living on half an ounce of breast milk. Mom was beside herself. We researched the best kinds of replacement formulas.

Leukodystrophy is a terrifying disease. It comes in many varieties, but the type that Rebekah was diagnosed with gradually breaks down the white matter in the brain until the body can no longer support itself. It ends in death. And it worked quickly; doctors told us she would die within the year.

I couldn’t even process this news. It wasn’t possible. I had prayed for this baby. I had waited for her. She had come. She was perfect. She couldn’t possibly be dying. Not my sister. Please, God, not this baby.

Doctors told my parents not to hold her too much, not to get attached. “Prepare yourselves,” they advised. “Distance yourselves from her now, and her death will be less painful.” My mom thought that was stupid. She had the child now, she was not going to pretend she didn’t love her, she couldn’t pretend she was dead already. She told me later that my dad had tried. He tried so hard not to get too involved, but he couldn’t help himself. He’d spend hours holding her. One of my favorite family snapshots shows my dad asleep in a La-Z-Boy recliner with a sleeping Rebekah in his arms.

My four-year-old brother was terrified of killing Rebekah. My mom would watch from the stairway as he’d approach Rebekah’s stroller when he thought no one was looking. He’d creep toward her, put out a hand, and touch her with one finger. Then, like a frightened animal, he’d jump back and run away. The sight broke her heart.

At six months, we had a birthday party for Rebekah, because we weren’t sure she’d reach her first birthday. We had cake and ice cream, wore party hats, sang the happy birthday song; it was a regular party. I don’t know how my parents did it. They looked happy. They looked like they were having a good time. They smiled, they laughed. I had no idea how much they were hurting then, but I can only imagine now how heart-wrenching that celebration must have been, how hard they were working to keep things normal for the boys and me.

Rebekah’s first birthday came and went. Then her second. Then her third. One day my parents came home from Iowa City elated. The doctors had decided she had lived too long—it couldn’t possibly be leukodystrophy; they didn’t know what it was, but it wasn’t leukodystrophy. They were overjoyed, but I remember being fairly indifferent to the news. After all, I had decided long before now that she wasn’t dying. I had prayed. She had come. And she was going to stay, I was already sure of it. Of course she was.

My parents didn’t tell me at the time, but the doctors were actually sure of nothing. Without a diagnosis, they had no idea what her future held. “Be financially prepared for her to live to be eighty, and emotionally prepared for her to die at any time,” they had warned. Impossible of course, but none of us worried about that anymore. The death sentence had been lifted. God had come through for us.

Of course He had.