by Misty Boyd
Betty took a drink of the lemonade, resting her spoon on the bread plate next to her bowl. “So there was a lot of pushback, people saying all these laws were unnecessary, and we were just asking to be treated special. That wasn’t true, though. We were just asking for equal opportunity, just to be able to be out in the world and struggle less. That’s all we wanted, but we had to fight for it.”
She gazed at Carissa intently. “Whatever’s in that mind and heart of yours, I know you and I know it’s good, but you’re in for a fight. Nothing good comes without a strong fight. I can put you in touch with some of the people I fought next to. Maybe they can help you.”
“I’d love that.” Carissa reached out for Betty’s hand, and felt the solidarity of it all. “It’ll be nice to have people in my corner who already know the ropes. And I’m willing to fight for what’s important to me, and for those babies.”
“Good,” Betty told her. “You need to keep that passion. It’ll serve you well when you get tired… and you will get tired!”
They finished up dinner and, while Betty gathered some phone numbers and emails, Isaac and Carissa cleared the table and carried things into the kitchen. Isaac put the left-over stew in a plastic container and the bread in a Ziploc bag, and Carissa rinsed dishes and silverware and put them in the dishwasher.
Betty rolled back into the kitchen, carrying a piece of notebook paper. “Here’s some contact information for people you can reach out to,” she said, handing the paper to Carissa. “And now, I hate to run you off, but I’d better send you on home before it gets too late. I know your parents are being pretty cautious right now until you get on your feet a little better.” She winked at Carissa. “You better get home to them before they start calling hospitals. Isaac, walk her out. You two can see each other tomorrow. And the next day. And the day after that. You know you will. Love birds. Carissa, we’ll see you next time.”
“Thanks so much.” Carissa hugged Betty, truly appreciative of her efforts. “Bye, Betty. Thank you for the wonderful dinner, too.”
“You give those people a shout,” Betty told her. “Whatever you’re up to, if it’s in the disability rights realm, those are your people. They’ll point you where you need to go.”
“I’ll get in touch with them,” Carissa promised.
Isaac walked Carissa out. He stopped at the car door, opening it so she could move from her chair into the driver’s seat. Leaning down, he said, “I don’t know what you’re up to, but I’m excited for you. Whatever this is, I want to be with you when you accomplish it.”
“Just saving the world. No big deal,” she replied.
“Sounds like a big deal to me.” He put her chair into the passenger side, then came around and kissed her.
“Well, maybe it will be someday.” She returned the kiss, then smiled up at him. “Your support is much appreciated.”
Carissa went home with a fire in her heart, excited for what the future might hold. Surgery recovery had been long and hard, but she finally felt like her head and heart were back in the game. It was time to get this thing moving. It was time to change the world, if only her tiny corner of it. Seeing that baby, and talking with his mother, had changed something inside her. She could never un-know what she knew now, and she had to do something about it. Maybe the people Betty told her about could help.
When she pulled into her driveway, she texted Isaac to let him know she was home safe. “I’m home. Loved dinner. Thank you both.” She got out of the car, rolled up the sidewalk, and went into the house.
“Hi,” she called. “I’m home!”
“We’re in the bedroom,” Sarah answered, “watching one of your dad’s infamous movie picks.”
“Okay,” Carissa said. “I’m going to get ready for bed.”
She went to her room. It was too late to make any phone calls, but she could email some of the people Betty had told her about. She started at the top of the list, and worked her way down, telling everyone on the list about the ideas she had. She didn’t even know how to get into politics. That was why she had gone pre-law in the first place, to learn her way around the system. For now, though, school was on hold, and she had to find another way in. She volunteered for politicians. She asked to be allowed to attend meetings, and she asked for anyone to volunteer to hear her heart.
Finally, she shut down her laptop and prayed. “God, I feel You talking. I feel Your pull. That boy in the nursery… I heard his story, and it changed me. No human life should ever be treated the way he was treated. Use me to make sure it doesn’t happen again.”
* * *
When Carissa had been in the hospital, she had run into the tiny baby and his mother during a rehabilitation session, wheeling around the hospital for endurance. She had stopped to look at the babies and seen him in his incubator. She could tell he had spina bifida by the way the gauze was wrapped around his back lesion. His mother had come out of the nursery at about the same time Carissa spotted him.
She gazed down at Carissa in her chair. “You know,” she said, “they say my boy will be in a wheelchair, too. I don’t know what to expect. My doctor encouraged me to abort every time I went in for a check-up.” Tears started running down her face, and her eyes took on a haunted look. Carissa reached for the woman’s hand and held onto it.
“But you didn’t,” she said softly.
“I couldn’t do that to my baby,” the woman said. “I told her I wouldn’t do it. She just kept pushing. It was like she thought his life wasn’t worth living, almost like he was a piece of garbage that needed to be thrown out. She just kept pressuring and pressuring. Told me and my husband this wasn’t what we wanted, that we could start over with a new, healthy baby. That it would be easier. That he would never walk, talk, or feed himself. That he’d be dependent on us for everything, if he even lived at all.”
She sobbed, her shoulders shaking by the force of her emotion. “But this was my boy! I couldn’t do it. I don’t know what happens from here, but I know I want THIS baby. I would never have aborted him. That’s my son. I wish that doctor could see him now, my boy. He’s a beautiful baby. I wish she could just see.” The mother turned toward the nursery window, love pouring from her.
“He has spina bifida?” Carissa asked.
“Yes. They aren’t sure what he’ll be capable of yet. All the doctors here say it’s just wait and see, but the prognosis is so much better than my doctor gave. They say he will likely be of normal intelligence, that eating may be a challenge, based on some other complications he could have, but that he’ll probably be able to do it. Walking is up in the air. They say he’ll just have to show us.” She looked back to Carissa, and smiled through her tears. “But it’s so much better than what we thought. So much better. I’m so glad I didn’t abort him. He’s so beautiful.”
“He really is,” Carissa replied. “What did you name him?”
“Christopher,” the mother said. “I just wish my doctor had told me the truth. I’m not even sure she knew the truth. She acted like my baby was some sort of mutant. Like he wouldn’t be normal. Like he wasn’t even a baby. I thought I was giving birth to a monster, but look at him. He’s just a little boy. He has some challenges, but we’ll deal with them. That’s my boy in there.”
Carissa shook her head. “It’s hard for me to believe they’re still telling parents all that stuff. I have friends with spina bifida whose parents were all told the same things. Some of them walk; some of them don’t.” She smiled up at this mother, knowing she was confused and full of questions. “But we’re all pretty independent and normal, outside of that. I understand why they said it about us. They just didn’t know what we could do, and things looked pretty bad back then. There wasn’t all the same medical technology, and I just don’t understand why they’re still saying that when my generation has clearly proven it false. I’m so sorry you went through that. I wish you’d been told the truth from the beginning.”
The other woman agreed. “I do, too. It would have m
ade my pregnancy much easier. I was sure I was carrying a dying baby inside me. It was so scary. But look at him. He’s really okay!”
“Yes, he’s really okay,” Carissa reassured her. “This is a good life. I just want you to know that. I know you’re probably still scared of how he’ll do in the world, but it’s good on this side, chair or not. He’ll be fine.”
“Thank you.” Christopher’s mother leaned down and hugged Carissa. “Thank you so much.”
* * *
Carissa left that conversation feeling angry and helpless, but maybe there was something she could do. She was just one person, but she still had a voice. That little baby in there didn’t, and she knew there were thousands more babies like him who also needed a voice to speak for them.
She wasn’t sure how she’d do it, but she had to do something. What she heard could not be unheard. That beautiful boy could not be unseen. Once she was sure she could do no more tonight, she climbed into bed and texted Isaac. “Turning in now. I love you and goodnight.”
“Okay. Goodnight, I love you, too,” he texted back.
She snuggled down in her pillow. She was so happy with Isaac, but not happy about those children like Christopher. But she’d find a way to make things better, with God’s help and the help of anyone else who wanted to join her on her quest.
Chapter 36
Annabelle Jenkins started her work day by checking her email. She deleted almost every one as spam, or some over-zealous idiot text-screaming at her about things she had no control over. She loved the citizens of her state, but sometimes they got a little rowdy for her. After all, she wasn’t the governor. She was only an assistant in his office. She had no power. She didn’t know what they expected her to do about their concerns. If the governor wasn’t doing what they thought he should be doing, they should email him. That’s why his email address was public. She didn’t have the power or the time to do anything about their complaints, especially with the amount of paperwork the governor put on her desk every day. She had complaints of her own.
She got to the very last email in her inbox, and almost deleted it, too, until she read the word “Spina Bifida” in the title. Her five-year-old daughter Isabella had spina bifida. When Annabelle was pregnant, the doctors told her all the horrible things that would happen to her unborn child. She’d never walk. She’d be mentally retarded. She’d be incapable of a normal life. They had pushed her to abort and, with all the pressure and such a bad prognosis, she almost had. But she hadn’t, and it was the best decision of her life.
Her daughter had exceeded all expectations. She walked, did all of her own self-care except putting on her leg braces. They were working on that issue, and Isabella would enter kindergarten this year in a normal classroom. So much for that bad prognosis.Her girl had taken those words and tossed them in the garbage!
Annabelle opened the email, and what she found inside both saddened and excited her. Carissa was a young woman born with spina bifida, and it looked like she was passionate about making some real change. Now this, Annabelle could get behind. She re-read the email.
Dear Ms. Jenkins,
I am a young woman born in the ’90s with myelomeningocele spina bifida. I’m a friend of Betty Carter, who you worked with to start the Americans with Disabilities Act in the 1980s.
First of all, I would like to thank you for all the work you did back then to make it easier for those of us born in this generation to navigate the world. I’m sure the disabled before my generation did not have it as easy, so thank you. I don’t know if you’re disabled or not, but you sure had a hand in making my life less challenging than it might have been.
I wanted to talk about playing my part in disability rights. I believe it’s time for my generation to take over the torch and make what you did even stronger and better. I believe we can go further in protecting our rights as people, but I need some help. I want to make sure that doctors who are giving out a diagnosis of lifelong disability are required to tell the honest, full truth about the disability they are diagnosing. It is my belief that many babies are needlessly killed based on disability, when the prognosis for that particular child is simply untrue, due to lack of physician knowledge and education. It is my understanding that physicians are handing out a prognosis based on literature that was written as far back as the 1950s. Medical research has come too far to rely on those sources to predict accurate futures for these children.
Doctors are still handing out the same bleak prognosis that was handed to my parents when I was born, and it wasn’t true or accurate even then. Babies are losing their lives over false information. This isn’t a pro-life or pro-choice issue. This is a truth issue.
Doctors should be required to keep themselves up to date on the latest research and treatments these babies are receiving if there is any chance they’ll be handing out this type of diagnosis. They should be held to a higher standard of education and knowledge, starting with the textbooks they learn from in school and continuing on throughout their whole careers. No family should have to face the idea of aborting their child because of false information.
In fact, no parent should be offered an abortion based on a false prognosis. It should be illegal to offer an abortion before having all of the current medical statistics on hand and ready to show these mothers and fathers. I don’t believe in abortion at all, but abortion based on false evidence of disability is a whole other playing field. It’s wrong and unfair to both the parents and the babies. Parents deserve the truth, and these babies deserve it too. Please help me help them.
Sincerely,
Carissa Schultz
Annabelle Jenkins put her head down on her desk, almost in tears. This had happened to her and her baby, too. She almost lost her sweet girl, not because she wanted to abort, but because the picture painted for her had been so bleak that she thought she might have no other choice. She thought the only choice she had as a good mother was to let her child stop suffering. She was so glad she hadn’t had the strength to go through with the abortion. To see her daughter now, she saw no suffering. She saw a little girl conquering. She had to help Carissa.
She picked up the phone and called the only person she could think of, Connie Peterson. Connie was the leader of a statewide spina bifida parents’ support group. They met in chapters once a month to have a meal and discuss issues, and sometimes just to feel like normal parents. In a group of moms and dads facing the same things you faced every day, sometimes the stigma of raising a disabled child got pushed to the back burner. Her local chapter was Annabelle’s lifeline. If anyone could gather the numbers together to make this happen, it was Connie. Connie could get this done.
The phone rang three times before Connie picked up. “This is Connie Peterson. How can I help you?”
“Connie! Hey, this is Annabelle, out of the southeast Texas chapter. I got an email this morning that I think might interest you. A young woman with spina bifida has a fire lit under her butt and wants doctors to tell the truth about spina bifida and other birth defects. Imagine that! Doctors finally telling the truth. Can I forward you the email? If anyone can get enough heads together to help this girl out, it would be you.”
“Annabelle, you think too highly of me, but send the email on. I’ll take a look.”
“Thank you!” Annabelle said. “You’re the best.”
Connie laughed out loud. “I am the best. That’s why you called me, right?”
“You know it. Bye, Connie!”
Annabelle hung up the phone and forwarded the email, then emailed Carissa back, telling her what the plan was.
Chapter 37
Carissa woke up early the next morning, eager to check her email. She knew it was a long shot, but she hoped she had grabbed the heartstrings of someone out there who could help her. She popped out of bed, opened up the laptop on her desk, and logged on. There was an email from one of the people on Betty’s list, Annabelle Jenkins.
“Oh, wow. This could be it. Or, you know, it could
be one of those stock emails, saying ‘Thank you for emailing. We don’t care. Vote for us next year!’ or something worse,” Carissa told herself, trying unsuccessfully not to get too excited. She clicked the email to open it.
Dear Ms. Schultz,
Thank you so much for inquiring about this matter. I have a daughter born with spina bifida myself, so your cause is near and dear to my heart. I think I may be able to help you. I’ve forwarded your email to Connie Peterson, who leads a state-wide support group for parents of children with spina bifida. If she sees fit, she will forward your email and ideas to all the local chapters of her group. If anyone can get the ball rolling, she can. She can gather enough bodies to make Congress hear us, and I, for one, plan to be one of those bodies. I look forward to working with you on this.
– Annabelle Jenkins
Carissa’s heart pounded. She had done it! Someone had listened to her. God had made a way. Nothing was impossible with God. What were the chances that the person on the other side of that email address had a daughter born with spina bifida? This was big stuff. Carissa could feel it. Something big was coming, but all she could do for now was wait to hear from this Connie person. She hoped Connie would be on board.
She signed out of her email and went out to see if Mom had anything for breakfast. She was not disappointed.
“Hey, honey, want some scrambled eggs and sausage?” Sarah asked, looking up from the stove.
“Do I? Of course I do! Have I ever rejected sausage? Ever?” Carissa asked.
“Not since you grew teeth,” Sarah replied. She brought a skillet full of eggs and sausage over to the table, scooped Carissa some, and then helped herself. Setting the skillet back on the stove, she poured two cups of coffee and carried them to the table, giving one to Carissa and putting the other one next to her own plate.