OPINION — I have spent so much time chasing Sen. John McCain around the Capitol that I joked my kids could recognize his voice from the womb. I regularly grabbed him in the Senate basement or outside the chamber to ask about overruns on the F-35 fighter jet or progress on the massive annual Pentagon policy bill.
He was usually more than happy to oblige. My beat, after all, was his sweet spot: oversight of the country’s massive security apparatus.
When I first set out covering McCain as a cub reporter 15 years ago, I never could have imagined he would save my son’s life — and never even know it.
When I was in the early stages of labor with my middle son, Danny, in September 2015, I had one last scoop I was determined to pin down. It all hinged on interviewing McCain, who wasn’t in the mood to talk and dodged me for days — at one point, jumping on the subway to the Dirksen Senate Office Building as the doors were closing and sticking his tongue out at me. I had to laugh, despite the fact I was pregnant and puffy and miserable. It was classic McCain.
In between counting contractions, I cornered him in the Senate basement.
“Hey, how you feeling? You know what they used to say in the Old West, get some blankets and plenty of hot water,” he said gingerly to me, as if he had all the time in the world. “What did they do with the blankets and hot water? I never understood that.”
I told him I really hoped it wouldn’t come to that. “You are what’s standing between me and maternity leave, so let me get this question in,” I said, smiling but impatient after my prolonged hunt for the man.
We then talked for a few minutes about Guantanamo Bay and he wished me well. I ran to the Senate Press Gallery, filed the story and the next day, Danny was born. At the hospital, not with blankets and hot water in the Senate basement, thank God.
Four months later, Danny started having weird twitching episodes. Within a week, we learned he had a very rare and dangerous type of seizure called infantile spasms. A few weeks later, he had an MRI and we learned he has an even rarer condition called lissencephaly. His brain is mostly smooth.
Prognosis was terrible. We were told he had a 50 percent chance of making it past the age of 10, but many kids — especially those with severe lissencephaly, as Danny appeared to have — die before the age of two. He would never walk, never talk, never smile and never recognize us, doctors said.
They were so very wrong.
He doesn’t walk, and likely never will. But he smiles with his whole face. He talks with his eyes. And he definitely recognizes us and everyone else in his life. He has opinions, he has favorite toys. He goes to school and has friends. He adores his big brother, who performs nightly shadow puppet shows that elicit the biggest smiles you’ll ever see. And he isn’t so sure about his baby brother, as any two-year-old would be about the person who unseated him as the baby in the family. He’s incredibly sweet, absolutely gorgeous and the toughest person I know.
When we got the diagnosis, my husband and I were devastated. But we dove into the research, the specialist appointments, the therapies and the day-to-day care with a ferocity and a sense of purpose I didn’t know we had.
The cost of Danny’s care quickly added up to the six digits before Danny even hit his first birthday. One of his medications cost $7,000 each month, a bargain compared to another treatment option.
That doesn’t even include the wheelchairs, stander, bath chair, Bipap, suction, feeding pump and tons of other equipment we have accumulated in the last two years. Or the nurses who now watch over Danny at home every night and monitor him so my husband and I can get a few hours of rest. Or the ambulance rides and ICU stays that have become an all-too-frequent part of our lives.
Danny has private insurance and Medicaid for children with special needs. Because of this, we are able to give him world-class care without going bankrupt. We are able to keep him out of the hospital more times than not because we have life-saving and insurance-provided nursing and equipment at home. We are able to give him and our two other sons a good quality of life. We are able to be a family of five, all under one roof.
We make life and death decisions with a regularity that sometimes makes our heads spin. But one thing that never, ever factors into those decisions, thanks to his insurance, is whether we can afford to keep our son alive.
Aside from the day of Danny’s diagnosis, I have never been as terrified as I was when the Senate debated health care last July. Never before in my life has my family’s future — my son’s future — hinged so much on one vote. On one man, really.
I won’t get into the merits of the Affordable Care Act or the GOP proposals. I’ve been in this town long enough to know no one party and no one person has all the answers. There is no perfect piece of legislation, there is no single solution. But the rushed process was unlike anything I’ve ever seen — particularly on something so consequential — in my nearly two decades covering Congress, and I feared the consequences for our family.
The night the Senate voted on the so-called skinny repeal of the law, I was up late with Danny, who was having a rough time. In truth, I probably wouldn’t have been able to sleep anyway.
I instinctively checked my email, knowing the Senate was in for a late night. I knew it all came down to McCain. I pulled up the C-SPAN feed and I watched and I waited, desperately trying to read body language of senators on the floor.
Watch: Watch John McCain Cast His Decisive Vote Against the GOP Health Care Bill
In that moment, I wasn’t a confident congressional reporter. I was a mom, holding her sick kid in the middle of the night, completely powerless to help him.
Finally, McCain confidently walked up to the desk, something I’ve watched him do from the gallery a hundred times. Probably more. But never on something that mattered so much to me personally. I saw him reach out his arm just the way he always did. And then, as if in slow motion, he gave the now-famous thumbs down.
I looked down at my beautiful little boy, who had finally settled in my arms. I kissed Danny as my tears fell into his curly dark hair. And I whispered a thank you. A thank you not just from me, but from thousands of parents like me for whom that vote was yet another life-and-death moment. A thank you to a man I’ve had the honor of covering — even in labor — for the better part of 15 years.
A thank you to the man who saved my son’s life, even as he was battling for his own.
Watch: Memories of McCain — Reporters Share Tales From a Life in Service