Dr. Taylor’s office was freezing, as usual. This man and his sixty-degree tundra. She never remembered to bring a sweater. At least she had her pants on now.
She stared at the old familiar walls of the exam room for what seemed like forever. The tile floor was painted with rainbows. The same cartoon characters painted on the ceiling had been there since she was a small child. Several children’s magazines and a toddler puzzle toy sat on a round wooden desk in the corner of the room. She guessed they were there to make kids more comfortable. She knew from experience that they didn’t help.
Just when she thought she’d been abandoned and forgotten, the door squeaked open, and in came feeble, gray-haired Doctor Taylor. He walked hunched over, leaning on an elaborately carved wooden cane.
“Hey, Doc, how does it look in there?” she asked.
“Hi, Carissa,” he said. “How have you been?” Without waiting for her response, he continued. “I’ve looked at your test results, and I see some things I don’t like. Are your parents here with you today?”
“Uh… no. I drove myself. Why? What’s going on?” A shiver of fear ran through her.
“Well, I compared the results from this year’s tests to those of last year, and I see some changes that may indicate a condition called tethered spinal cord syndrome. Have you heard of that?”
“No. What is it? Am I okay?” Now she was really scared.
The doctor leaned against the exam table, looking intently into Carissa’s file. He ran his fingers through what was left of his hair. “Yes and no. I want to have you go in for further testing. Your urodynamic study shows some bladder changes that are indicative of changes in your overall spinal health, and I’d rather be cautious and have a look before things get worse,” he told her. “We may be able to get on top of it.”
“On top of it? What are you saying? It’s going to get worse?”
He looked at her calmly. “It could, Carissa, but don’t worry. We’re going to look into it, and I’ll do everything I can to make sure you get the best care possible. Don’t worry. Let’s make another appointment when your mom and dad can come in, and we can all talk together.”
“Doctor Taylor, what does all this mean?” She could hear her voice starting to rise and tried to force herself to be calm. “Just tell me. I’m eighteen and I’ve dealt with spina bifida my whole life. I can take it. Just tell me what’s wrong with me!”
“Okay,” he said in calm voice, as if he hoped that would lessen her apprehension, “if you’re sure you don’t want your parents here. You are eighteen. Legally, you can take care of all this on your own, and you’re a strong girl, one of my toughest patients.” He paused, gazing at her thoughtfully. “Carissa, tethered cord syndrome is a condition in which the damaged part of your spinal cord is attaching and being pulled on by other structures inside your body, most likely, in your case, scar tissue from your original closure. What this means is there’s a possibility of further bowel and bladder issues, and the loss of what little leg movement you still have intact. You would have a harder time transferring to and from your chair, and you may experience some severe pain if this is allowed to continue. Now, I’m not saying you have it, but your bladder is showing some definite warning signs, and I want to set you up for a MRI and a consult with a neurosurgeon here at the hospital.”
“Neurosurgeon? Surgery? I need surgery again?” she blurted. She couldn’t believe this was happening, had thought all the surgery was behind her. From the original back closure, to the various leg surgeries, and countless bowel and bladder operations, surgery had followed Carissa through her whole life. She just wanted to be done.
“Maybe, Carissa, maybe. I’m not sure yet. Let’s just take a look and see what the MRI says.”
“Okay…” she agreed, unconvinced.
* * *
Carissa sat in her car and cried for a long time. She couldn’t do this again. Another surgery? She had already had thirteen surgeries. She felt like a human lab rat. Did this ever end? Was she ever just going to be stable? “God, please, I can’t do this!” she cried out.
The drive home was long. She wished she had brought her mother to the appointment with her. She had been going through an independent streak since turning eighteen three months ago, but maybe she wasn’t so grown up after all.
She pulled up in the driveway and stopped. How was she going to tell her parents? They’d already been through so much with her. It seemed like she was constantly putting them through some new worry. She hated this for them as much as she hated it for herself. They didn’t deserve this any more than she did.
But it was time. She couldn’t sit here forever. She got out of the car and went inside.
Her mother was at the kitchen table, arms folded in front of her, fingers interlaced.
“Honey, Dr. Taylor called and told me. Are you okay?” It looked like she wouldn’t have to break her mother’s heart after all. Dr. Taylor had already done it.
“Mom, I don’t think I can do this, not again. I can’t let them cut me again! I’m so scared!”
“I know, honey. I know. But you’re so strong. You’re my girl. You can do this. God will carry you. And we don’t even know for sure yet. Don’t borrow trouble. I love you. We’ll get through this.” Sarah fidgeted in her chair, trying to convince herself to follow her own instruction. There was no need to panic about another operation until they had all the information. She knew that but, as she looked at her scared daughter, she could hardly hide her own fear.
“But, Mom, Kayla had surgery and never came off the table! What if…” Carissa had met Kayla at spina bifida camp when they were six. They had become fast friends, and had been attached at the wheels ever since. Kayla had gone in for a routine exploratory laparoscopy last year and had died during surgery. The autopsy revealed that Kayla had too much scar tissue in her abdomen, and one of the tools used during surgery had pierced a bit of intestine that was not where it was supposed to be, and intestinal fluid and acid leaked into her abdominal cavity. It ate at her organs before doctors found it, and she could not be saved.
“Honey, that will NOT happen to you,” Sarah assured her. She got up from her seat at the table and went over to wrap her arms around Carissa. “There is no chance of that happening to you. They aren’t even going into your stomach. It won’t happen. You’ll be fine.”
“Okay, Mom. I just wish Kayla was still here. I miss her so much. I need her here with me.”
“I know, baby. I know you miss her. She’s here, though, in your heart, for always, until you see her again in Heaven.”
When Jim got home that evening, before dinner was served, they gathered as a family to pray. Jim and Sarah laid their hands on Carissa’s body and prayed against tethered cord syndrome, against surgery, against harm, and against further deterioration. They ended the prayer by giving the whole situation over to God. If Carissa had to have surgery, they would trust Him. He was their hope in everything, and He was in control.
Carissa loved when her parents prayed over her. There was nothing like it. It brought her such peace. When she went to bed that night, she was totally relaxed about whatever God decided.