Timmy Morrison arrived at the United States Capitol on Tuesday morning with a big grin, a bright orange shirt, Velcro-strap shoes, and a vague understanding of what senators do.

The 6-year-old boy was on the Hill to do what hundreds of other people were there to do (though usually not in Velcro): lobby Congress.

Over the course of a taxing day, Timmy and his mother snapped photos with senators and scored an elusive meeting with the office of a crucial Republican swing vote on the pending bill to repeal and replace the Affordable Care Act. But their time on the Hill would prove vexing — they found it was difficult to lobby on a health care bill that they expect to affect them massively, but also haven’t seen.

Timmy has a deeply personal stake in the health care debate, which could come to a Senate vote as early as next week, even though Republican leaders still have not released the text of their bill. He was born seven weeks premature and spent the first six months of his life in the hospital. He still has significant health issues due to a rare genetic disease. He has been under anesthesia more than 45 times.

Before Obamacare, many health insurance plans (including Timmy’s) had lifetime coverage limits. They would cap how much one person could spend on medical care, often at $1 million.

Obamacare banned those limits six days before Timmy was born. He went on to spend more than $2 million during his first hospital stay.

Republicans typically say they support leaving this ban in place. Still, the House-passed American Health Care Act would allow big employers to reinstitute lifetime limits. The Morrisons have no idea how they’d handle a situation like that — their livelihood depends on this one small part of Obamacare remaining intact.

The Affordable Care Act is brimming with provisions like these: small parts of the law that are hugely consequential for the people who rely on them. If Republicans repeal the law, some of these provisions will survive, and others won’t.

“We are constantly thinking about it,” Michelle, Timmy’s mom, says. “I’d like to say we’re planning, but we’re not, because how do you even plan? It’s not like I can set aside all kinds of money.”

Last Sunday night, Michelle got together with two other parents of medically fragile children. They sat around the kitchen table eating leftover birthday cake. They came up with a plan: They would lobby Congress. They would take their kids, their strollers, their bulky bags of medical equipment, to make clear what was at stake. They would knock on doors and, as Michelle described it, go “trick-or-treating for health care.”

They would not grind the Senate health care debate to a halt — Michelle was clear-eyed about that. But she felt, with so much on the line, that she had to do something. She and Mark, Timmy’s dad, felt like they might be able to make the debate a bit more human.

“There’s the completely unrealistic goal of getting this thing stopped,” she said. “But the main thing we’re wanting to do is to slow things down, to let us see the bill before anything. I’m not under any illusion that we have any meeting with one aide and then suddenly everything changes, but we’ll try.”

“Trick-or-treating for health care”

It is hard to take care of a 6-year-old with complex medical needs. It is even harder to take that 6-year-old to lobby Congress.

Timmy breathes through a tracheotomy tube in his throat, which requires constant monitoring and cleaning. A heavy blue backpack full of medical supplies travels with him wherever he goes. This makes it hard for these kids and their families to have a voice in political debates.

“These are kids who are vulnerable, but their families don’t have any free time,” Michelle says. “A lot of these kids, their families are either living on the verge of bankruptcy or if one ball drops, the whole thing falls apart. You are nonstop, 24/7 taking care of your child. Political advocacy is the last thing you can make time for.”

Michelle took off Tuesday from work. So did parents of two other children with complex medical needs, who met them at the Capitol. The group included 18-month-old Josephine, a little girl with a big giggle who relies on a ventilator attached to her stroller to breathe. Her parents estimate she has spent more than $4 million on care in her short life. She relies on Medicaid for coverage, which the House bill cuts by $880 billion.

The group also included Xiomara, nearly 3, who wore pigtails and a white dress — and whose favorite activity seems to be trying to wriggle out of her stroller. When one senator tried to shake her hand, she extended her foot out from the stroller and offered it instead.

“She’s starting school in the fall, she’s going five times a week, and she’s doing so great despite those 169 days in the NICU,” her mother, Elena Hung, says. “And it’s because we have insurance and because we have Medicaid.”

Several Democratic senators — who roundly opposed the repeal bill — made time for the group. Sen. Chris Van Hollen (D-MD) sat with the family in his office conference room. The parents introduced themselves, while Timmy sat in a stiff, blue-backed chair fidgeting with something underneath the long wooden table.

Sen. Elizabeth Warren (D-MA) bumped into the group in the hallway. She immediately began taking photographs with them, brushing aside aides’ reminders of another meeting she had to get to. Sen. Chuck Schumer (D-NY) invited the group to visit his offices right outside the Senate chamber and popped out for a minute to thank them.

The meetings were often quick. They followed a formula: Senators would thank the families for their work, ask them to visit Republican offices, and take a group photo. And the families would wonder: Did this actually make a difference? Would it shape the debate at all, meeting with senators who already agree with them?

Michelle and Elena had collected more than 100 stories from other parents of medically fragile children all over the country. They handed out copies of those stories to the senators who might use them to fight for the Affordable Care Act.

They mostly wanted to talk to Republican senators — but those meetings were a lot harder to get.

Advocacy groups have struggled to get meetings with Republican Senators. Timmy did too.

Advocates have struggled to wield influence over the Senate’s secretive health care process. Noam Levey of the Los Angeles Times reported that Senate Majority Leader Mitch McConnell (R-KY) had declined meetings with health groups including the American Heart Association, the American Lung Association, and the March of Dimes.

“A representative from McConnell’s office told them staff schedules were too busy,” Levey wrote.

Mark Morrison tried to call McConnell’s office Wednesday morning but couldn’t get through; the message box said it wasn’t accepting more voicemails.

The Morrisons focused their outreach efforts on Republican senators’ offices but didn’t have much luck. They corresponded with an aide in Sen. Mike Lee’s (R-UT) office but were unable to pin down a meeting. They had some families from Pennsylvania try Sen. Pat Toomey (R-PA) — they even faxed him a letter — but that didn’t work, either.

They were able to wander into Sen. Dean Heller’s (R-NV) office without a meeting on the books. They talked to a staff member, who told them if the vote had been that day, the senator would have voted against.

The Morrisons also secured one scheduled GOP meeting, with the staff of Sen. Rob Portman (R-OH). Timmy lives in Maryland now but was born in Ohio, and they still have family left in the state.

Many consider Portman a vote to watch in the Senate debate. When the House passed the AHCA last month, he quickly put out a statement denouncing the bill’s cuts to Medicaid. But he’s also shown an openness to ending the Medicaid expansion, just on a longer time frame.

Portman sent a staff member to meet with the families. It was 2:30 pm and Timmy was getting a bit restless, so Michelle let him play iPad games as they talked about Medicaid and lifetime limits.

The Morrisons asked that I not attend this meeting. They wanted to make the best impression they could, and didn’t think bringing a reporter would set the right tone. We caught up afterward, and I asked Michelle how she felt it went.

“He was very happy to listen, happy to hear our concerns, very ‘we’re on your side,’” she said. The aide listened attentively and nodded.

But they felt it was hard to actually talk about the substance of the Senate bill precisely because there was no Senate bill to discuss. It is vexingly difficult to lobby against a health care bill that they expect to have massive effects on their lives — but also haven’t seen.

Timmy and his little sister Ivy thought the meeting went well: They both came out with lollipops that staff had given them.

By this time, it was nearly 4 pm. The families had spent six hours lobbying, lugging medical equipment from one Senate office to another. The group was getting tired, but decided they should hand out some photocopied stories to the offices that didn’t take meetings. Sen. Mike Lee’s office was right down the hall.

“We could stop by and say, ‘Hey we have these stories to drop off,’” Michelle suggested.

“I think it’s worth it,” Mark agreed.

Timmy played a game called Robot Factory on his iPad. He was done lobbying, and back to being 6 years old.

Additional reporting by Carly Sitrin.