Chapter Text
For the first several years, Steve didn't think his life was all that different from anyone else's. The opportunity to thoroughly compare his daily routine to another kid's never arose, and even if it did he wouldn't have taken advantage of it. As a toddler, he had much more important things to do than wonder if other kids had to do all the same things he did.
The important words were already engrained in his vocabulary by the time he was old enough to string a sentence together. Enzymes. CPT, or chest physical therapy. Cough, deep breathing, mucus, medicine. All related to the big word, the one that he learned pretty early on defined him almost as much as being a person did. Sixty five roses. At least, that's how he said it. The grown-ups said cystic fibrosis, but that was a big, confusing word for a little mouth to say. Steve didn't really know what it meant, but he did manage to draw a connection between it and many of the things he did every day.
Anytime he ate, his mom first cut open a little pill and poured the beads on applesauce for him to eat. If he didn't finish it, he wasn't allowed to eat, so he always did. Besides, he liked applesauce. He took other pills too that helped him with things like opening his airways and fighting infections. Between those and the enzymes, he took more than twenty pills every day. On Sundays he and his mom counted them out and put them in his pill containers for the week, and he knew all of them by name by the time he turned four. Twice daily, before breakfast and before dinner, he did his inhaled medications through the nebulizer mask and they did CPT. Steve didn't particularly enjoy it, but his parents made up the rule that he could only watch Paw Patrol during CPT, so if he squirmed away he wouldn't get to watch. Mostly Daddy did it since Mommy worked, but they both knew the routine by heart. Steve just had to sit or lie down in a bunch of different positions while Daddy worked his back and chest to get him to cough up mucus. Steve's only jobs were staying still and deep breathing when Daddy said so. One of his doctors taught him how to deep breathe and he got lots of practice. He liked to think he was pretty good at it.
They visited doctors a lot, every three months when he went to clinic. Most of them were really nice, but they used a lot of words he didn't understand. Sometimes they poked him with needles and pulled blood out, X-rayed his chest and abdomen, and listened to his lungs with a stethoscope. Every time, they asked him to cough and then stuck a swab so far back in his throat that he felt like he was choking. They explained the throat culture was meant to look out for germs that might hurt him, but that didn't make him hate it any less. The most exciting thing he ever got to do was blow as hard as he could on the special machine for his PFT, pulmonary function test. After he turned five, they moved to a new apartment in Brooklyn so he could meet Dr. Erskine and bunch of other new doctors. He liked Dr. Erskine; the man sounded really cool when he talked and he always included Steve by explaining the big words in ways he could understand.
But the best part about moving to Brooklyn was meeting Bucky.
Steve and his parents visited the Barnes for dinner and he had so much fun playing with Bucky that he didn't want to leave. The two of them had countless playdates since they lived so close together, and Steve got to know him better than he'd ever known another kid before. It was great, but with that friendship came the realization that Bucky lived very differently than Steve. He didn't do CPT, he didn't take enzymes—which Steve's mom now made him swallow whole—and his parents didn't freak out if he didn't finish his dinner. Steve asked his parents one day why Bucky didn't do these things, and they explained that Bucky didn't have cystic fibrosis like Steve did. Only then did Steve truly understand that CF made him different than all the other kids.
That was okay, though. It was just a thing.
But after his first extended stay at Gravesen, he realized it was a thing that made him sick.
Gravesen was a hospital, That much he knew just by looking at it. He normally went just to see Dr. Erskine and the rest of his team and returned home the same day, but this time was different. This time, they put him in a room on a hallway with a bunch of other rooms just like it. He'd never been to this part of the hospital before, and it scared him. Other kids occupied some of the other rooms, but they were all way older than Steve. A lot of things happened that first day.
He met Nurse Peggy, who explained, while sticking him with a needle to draw blood, that he was going to get a tube placed in his arm so they wouldn't have to stick him with more needles. Steve thought that sounded like a great idea until he understood exactly what that would entail. They gave him medicine to make him go to sleep so they could insert the line and also stick a tube down into his lungs to see the most congested areas better than an X-ray could. He woke up with his throat numb, a patch of his arm covered in a clear dressing, and a tube just hanging there. It was terrifying. However, he didn't get stuck with any more needles after, which was awesome. They put all the medicine in and took blood samples out through the tube, apparently called a PICC line, and he didn't even feel it.
Steve stayed at Gravesen for two weeks, which he didn't like one bit. Mommy or Daddy was always with him, but he missed his home and his toys and his bed. The first night he cried for an hour at bedtime because he didn't want to sleep here in this unfamiliar place. Every day, he got medicine through the tube. It hung from bags on a pole he could roll around with him if he walked around the ward. He also breathed in other medicine, and did exercises for his chest and ribs with a man named Dr. Pym. Those parts weren't so bad, but Steve did not like the way they did CPT here. Not at all.
At home, it happened twice a day and that was it. Here, a respiratory therapist visited him four times a day. He wasn't nearly as gentle as Daddy, and he made Steve cough so hard that his whole body hurt. More mucus came out of his lungs than ever before, and it tasted horrible on its way out.
It wouldn't have been that bad if he had company, but Bucky could only visit once during Steve's entire stay, and he was too scared of everything in here to do much playing. The other kids all knew each other already and made no effort to include Steve in any of their big kid games. Steve did learn their names, though. Logan, Charlie, Max, and Jean.
After two weeks, they removed the PICC line, he picked out a Paw Patrol band-aid to cover the spot, and he got to go home! He'd never been more excited to walk through his own front door. "I never want to do that again," he proclaimed as Mommy helped him get ready for bed that night.
"I know it wasn't fun, but don't you feel better than you did right before?"
"I guess so." He had been coughing more than usual and didn't want to eat very much. But that wasn't as bad as two weeks in the hospital. "But I don't wanna go there again."
"I know, buddy, but sometimes we have to do things we don't want to, and for you that means going to Gravesen sometimes. We need to everything we can to keep you healthy."
"Okay," he sighed.
The next time he went to see the doctor, they seemed very happy with how his lungs were working. However they were not happy with his height and weight. "At his age we should be seeing a gain of about five pounds and two inches a year, but over the last six months there's been no increase in either. He actually lost significant weight after the exacerbation."
"They told us that might happen," his mother sighed. Steve understood what they were talking about, but he didn't see why it was such a big deal. They talked for a long time about things like calories and supplements, but Steve stopped paying attention and returned to his coloring.
After that, his parents got a lot stricter about how much he ate, to the point where sometimes he ended up crying when they pushed him to clean his plate even when he was full. They made him drink these things that looked like milkshakes but didn't taste nearly as good, but they also let him have real milkshakes so often that he found he didn't really want them anymore. He could never finish one anyway.
~0~
Steve and Bucky started kindergarten that fall, and they were in the same class. They'd never been so excited for anything in their lives. Mom and Dad talked to his teacher and a bunch of other people at the school about his CF and other needs. Though Steve didn't remember this, when he was three he had a severe asthma attack from exposure to a cat at his mom's friend's house. They had him tested and found he was allergic to dogs and dust mites too, so he needed to avoid them. The school didn't currently teach any students who utilized service animals, so they were all clear in that respect. His only real accommodation would be visiting the nurse's office before lunch every day to take his enzymes.
For the first week, his teacher accompanied him, but she soon delegated that responsibility to Bucky. The lunchroom was very close to the nurse, so Steve could've easily gone alone, but the buddy system was apparently mandatory, and Bucky didn't mind tagging along. Steve loved everything about kindergarten. He got to see Bucky five days a week for almost the entire day, and sometimes he came over after school to play for even longer. Steve was elated to start reading some of his own bedtime stories instead of letting Mommy or Daddy do all of it. Now, they only had to help him with the big words.
On a Friday in October, Bucky slept over for the first time because Mr. and Mrs. Barnes were going to a wedding upstate. They talked about it nonstop all day at school. When they got to Steve's after school, they dumped their backpacks and dashed off to Steve's room to play with a rushed "hello" to Mr. Rogers.
"Steve, did you finish your lunch today?" his dad asked from the other room.
"Yeah!" he called.
"Why does the inside of your lunchbox tell me otherwise?"
Steve sighed. He'd forgotten that he'd only drank half of his supplement today. Dad brought the bottle into the room and handed it to Steve to finish.
"It's warm now. They taste gross warm."
"Fine. I'll put it in the fridge for half an hour, and then you have to finish it, okay?"
"Okay."
Thirty minutes later, their game was interrupted by Steve's dad returning with the drink, a dose of enzymes, and enough apples and peanut butter for both of them. It wasn't the first time Bucky had been over after school, but he almost always commented, "Your parents make the best snacks." Personally, Steve thought the snacks at Bucky's house were just as good, if not better, but he didn't argue. Dad stayed to ensure Steve finished everything he was supposed to, then left them to their games. They spent hours building a track out of books and blocks and driving cars around it, occasionally disrupting them with attacks from a dinosaur. Just after their most magnificent crash, Steve's mom returned from work and called them out to say hi. Steve barreled into her arms for a hug while Bucky hung back a few paces. "Hi Mrs. Rogers," he said.
"Hi Bucky, how are you?"
"Good."
"Do you want to see our racetrack?" Steve asked eagerly.
"Maybe in a little bit. I'm gonna go change clothes and then do your CPT while Dad makes dinner."
"Do we have to do it? Bucky's here and I wanna play with him."
"Yes, we have to. You know that." She kissed his forehead and headed to her room. Steve pouted, but he pulled himself together for Bucky's sake.
"So, your parents are going to a wedding?" he asked.
"Yeah," Bucky replied.
"Who's getting married?"
"My dad's old friend. They went to sleepaway camp together every summer."
"Cool."
"I wasn't invited. They said it was boring for kids," Bucky explained.
"A sleepover is more fun than a wedding."
"Yeah."
"Alright, you ready?" Mom asked, reemerging in regular clothes instead of her scrubs.
"No," Steve grumbled.
"What are we doing?" Bucky asked confusedly.
"Steve and I will show you."
Reluctantly, Steve grabbed his pillow and sat down in the chair his mom moved in from the kitchen. Mom explained all about CPT to Bucky while she went through the motions. Steve couldn't really talk normally with the vibration resonating through his chest and intermittent coughing, so he just listened. Bucky caught on pretty quickly to the idea and accepted this as a part of CF just as he had with the enzyme pills. Afterwards, they ate dinner; Steve's dad made homemade pizza dough and let them help put on toppings. That was always Steve's favorite part. Bucky and Steve got to stay up late, much to their delight. The Barnes ended up staying for two hours when they came to pick him up because he and Steve didn't want to part. Fortunately, the Rogers and the Barnes got along just as well as their sons.
~0~
At Steve's next doctor's appointment, he sensed they were not pleased. The discussion dragged on and on until Steve nearly fell asleep from boredom. In the days after, his parents were incredibly tense, having whispered conversations in the kitchen and giving him even more hugs and kisses than usual—which was a lot. Something was going on, but he couldn't put his finger on what. Eventually, he found out.
Steve grabbed the Knuffle Bunny book off the shelf and eagerly presented it to his mother. She took it, but instead of opening it to read she cast it aside. "I want to read a new book tonight," she explained to him. Steve was really in the mood for Knuffle Bunny, but he thought it was fair to let Mom choose tonight since he chose all the time. He crawled under the covers as she picked up the new book and sat next to him.
Steve was learning to read, so he could decipher most of his books on his own, but he liked it more when Mom read to him. He looked at the cover of the book and read aloud, "My Belly Has Two Buttons." The title didn't make much sense to him. Neither did the picture on the cover, which had two hands making a heart around a blue button and a weird-shaped white thing. "What does that mean?"
"Why don't we read the book and find out?"
Steve leaned in closer to Mom as she began to read about Nico, a little boy with a tube in his stomach to give him food, water, and medicine. In the middle, he found himself running a hand over his stomach to make sure he still only had one belly button. While he enjoyed the story, it was no Knuffle Bunny, and Steve had no idea why his mother wanted to read this so badly.
"What did you think?" Mom asked after she closed the book. She showed him the picture on the back, a real photo and not just a drawing, of one of the white tubes sticking out of a person's stomach. Honestly, it freaked Steve out a little bit.
"Knuffle Bunny is better," he said matter-of-factly. "Can we read that too?"
"No, we're going to talk about this a little longer, okay? It's very important."
"Why?"
"Because very soon, you're going to get a button just like in the book."
"No!" Steve immediately curled around his stomach as if protecting it from someone sticking a tube in there.
"Yes, sweetheart. The doctors say you need one to help you grow."
"But I can eat normal!" The boy in the book wasn't allowed to eat anything with his mouth, which is why he got a tube, but Steve could do that. He ate every day, just the same as all the other kids.
"I know you can, and you will still eat normally after the tube. It's just there so we can give you the extra food that you need, does that make sense? I've told you before that CF means you have to eat more than other kids your age, and this is going to make it so much easier for you to do that. You won't have to eat more than you want to anymore."
"But I don't want it!"
She ran a comforting hand through his hair. "I know, but you'll get used to it so fast that you'll hardly remember what it was like before."
"I don't want to get used to that. I don't want any tubes."
"Steve, I know it's scary, but you have to trust me and trust the doctors, okay? Having more nutrition is going to make you feel better."
"But I don't feel bad."
"That doesn't mean you can't feel even better," she assured. "How does that sound?"
Steve had to admit that seemed pretty cool, but he didn't know if it was worth it. "Can I take it out if I don't like it?" he questioned.
Mom hesitated before starting to answer. "No, Steve. Once it's in it has to stay there until the doctors say it can come out, okay?"
"How does it even get there in the first place?"
"Well, that's the easy part," she told him. "They put it in while you're asleep so you don't feel anything."
"What do they do while I'm asleep?" At this point, he was genuinely curious.
"They put a tube down your throat with a teeny, tiny camera so they can see what they're doing inside your stomach," she explained. Steve listened with wide-eyed fascination. "And then they make a small cut where the tube is going to go and pop it into place. That's all there is to it."
"That sounds scary," he said warily.
"You don't have to worry about that because you'll be sleeping."
"What happens when I wake up?"
"Daddy and I will be there, and nurses are going to make sure you're doing okay and show us how to take care of the tube."
"Will you help me take care of it?"
"Of course. But you're going to learn too so you can help me and do some of it all by yourself, okay?"
Steve still wasn't sure about the whole concept, but he didn't want to make Mom mad by arguing. Plus, she sounded kind of excited for this, and he wanted her to be happy. "Okay," he acquiesced. She wrapped him up in a great big hug and kissed his temple. Then, she picked up Knuffle Bunny and read that book too. Steve listened attentively, but he started to doze by page seven and was fast asleep before she even finished.