A last minute thought to drop into a local public forum with her US congresswoman launched a sequence of events that ended with resident Bridget Sclafani winging down to Washington, DC, to sit in on the 2020 State of the Union address at the Capitol.

The trip also provided Ms Sclafani an opportunity to share with federal officials some of the frustrations and setbacks she and her late husband, Paul, experienced as they struggled through his five year journey after being diagnosed with brain cancer.

She told The Newtown Bee upon her return that the experience helped her better appreciate stories she heard from her father, who served in the Honor Guard following the death of former President Dwight D. Eisenhower.

“It all started January 21 when I decided to go to [Congresswoman Jahana Hayes’] Town Hall meeting at the Community Center,” Ms Sclafani said. “I kept thinking I had so many concerns about health care that I was just going to go to hear what she had to say.”

After hearing a review of the legislation the 5th District lawmaker had been working on, Ms Sclafani’s name was one of the last ones picked from a list of attendees who wanted to ask a question.

“So instead of having a question, I just told her that over the last six years my husband was ill, and I was really frustrated with the health care system, the cost of prescriptions, and how my husband had since passed away,” Ms Sclafani said. “So after she gave us a little overview of health care issues, I went up to her and gave her a little coin I had brought that had the word ‘HOPE’ on the back and told her I hoped she would be successful in making a difference in Washington.”

Little did the Newtown resident know, but that coin coincidentally reflected part of a motto Rep Hayes espoused when she was a Waterbury high school teacher who was named National Teacher of the Year in 2016.

“She looked at me and said ‘How did you know that was my slogan?’ — and she said that in her classroom she talked about hope all the time,” Ms Sclafani said. “She said for her, it stood for ‘Help Ordinary People Everywhere,’ and I had no idea. But I told her without hope, I would not be here today. That’s what kept me going through all of the challenges with Paul.”

After embracing and leaving the lawmaker with a few bracelets embossed with her Paul Sclafani Memorial Foundation logo, Ms Sclafani returned home.

Getting The Call

“And it was about five days later I got a phone call and it said it was coming from the US Capitol,” she said, “but I thought it was coming from [a similarly named credit card company], so I ignored it at first. But the next morning I decided to call the number back, and it turned out to be the congresswoman’s office calling, inviting me to be her guest at the State of the Union.”

Ms Sclafani said she was “initially in shock.”

“I always thought they bring really important people to this address — or big contributors. But in a follow-up note she said she was just really moved by my story, and that she was committed to fighting for me. So I agreed,” Ms Sclafani said. “I didn’t agree to go for any political reasons, though. It’s because I am really concerned about the state of the country’s health care system.”

The Newtown guest said through the whirlwind experience, Ms Sclafani heard President Donald Trump commit to fighting for citizens who had pre-existing conditions who were able to qualify for health care coverage under the Affordable Care Act.

“So I was happy to hear that,” she said, “and he mentioned something about lowering the cost of drugs — which is an issue Congresswoman Hayes said she is fighting for, too. I remember telling her about just one drug that Paul was on that cost $25,000 every two weeks. Back then I was told not to worry about it because it was covered by insurance, but I still had to meet the high deductible of our health plan and that drug was part of it.

“I guess I was lucky because I went directly to the drug company and eventually got them to pay for it,” she said. “But much like a lot of the other issues around Paul’s coverage and care, I told Jahana that I was a mom handling the bulk of caregiving for Paul while raising two daughters, and I was on the phone for hours every day fighting to get him the coverage that was promised on his policy.”

That level of commitment and devoted care helped extend what was originally predicted to be six months of survival, to nearly six years.

“I did the right thing by getting and paying for a very expensive health care policy, and doing everything we were supposed to do, and I still ended up devoting more time than a full-time job just fighting for the coverage we were supposed to get according to the policy,” Ms Sclafani said. “When you’re caring for a family that includes a dying father and husband, you just shouldn’t have to do that.”

Even when Paul Sclafani qualified for Medicare, his widow said she was initially told “he was not sick enough to qualify for hospice coverage, so I had to self pay for that initially.”

“Then once he got on to hospice, they said Medicare would not cover the specific drugs that he found were specific to helping him control seizures he was having. So every day I would drive to the pharmacy and pay the $50 each for those two pills. And then I’d drive them to hospice and give them to the nurses to give to him . . . every day.”

A Whirlwind Visit

Upon her arrival in Washington ahead of the address, Ms Sclafani met Congresswoman Hayes at her office and spent about 30 minutes talking with her and her staff about her experiences.

“Then she and I walked through a tunnel to the Capitol for the address, and came out right into the rotunda,” Ms Sclafani recalled. “For me, it felt like I was on the red carpet. And I was reminded of how my dad talked about being part of the Air Force Honor Guard when President Eisenhower was lying in state there. So I could almost feel his presence, too, which was neat.”

After taking her seat, Ms Sclafani took her seat — right next to Vice President Mike Pence’s sister-in-law.

“That was interesting because she was up and down every time the President made a comment that reflected her ideals. But she was really nice and talkative. She really helped make the night exciting, too,” Ms Sclafani said.

From her seat, the Newtown resident could easily see the president, as well as Speaker Mitch McConnell, and Senator Mitt Romney.

“It was great because at the pre-event reception I got to meet and talk with [Connecticut] Congresswoman Rosa DeLauro, and a number of other lawmakers and their guests. But once it was all over, Jahana walked me back to her office and from there I went back to my hotel room where I was able to watch the whole thing over on television, which felt like a whole different experience. I saw things I didn’t see when I was there because you get so wrapped up in the spectacle and the excitement of the moment.”

The next day, Ms Sclafani returned to Newtown. Upon reflecting on her brief visit to Washington, Ms Sclafani said she had no regrets.

“I just really hope that lawmakers can get along, and that they and the Congresswoman can do the things that our country needs to have done right now,” she said. “And I think I’ll probably engage a little more in politics, so I can better understand the political process. The way things are going in the country right now, I’m feeling like I need to get more involved.”