The other night, while Pip and I were watching Bunny in her middle school musical, I missed a text from my friend across the alley. Had I seen her son? Was he at my place? Twenty minutes later, a second text told me he was found playing in a friend’s backyard. I got both texts at the same time – nearly two hours after he first went missing.
I was sorry not to have been any help. I know that feeling. I know she felt so helpless. So desperate. I’ve been there. Your throat tightens and your heart races and your mind spins. You look around and everyone is just going about their business like nothing is happening – as if the world is still spinning – but you felt it lurch to a stop when you looked for your child and didn’t see him. You want to scream out and tell everyone to stop everything and focus only on him until he’s safe.
I don’t ever want another parent to feel that way. I want you to know – friends and strangers – if your child is suddenly missing, I will help you look. If your child is in danger, I will step in.
That’s not something special about me. That’s how we are as a species. It’s innate.
It’s why we speak at so many fundraisers. Because people hear amazing stories about children in peril, children being saved, children succumbing to illness, and they want to jump in and help in whatever way they can.
You know what I’m talking about, don’t you? The fear? The desire to help?
This is why I am reaching out now. I need you to understand something – from one parent to another.
If the ACA (Obamacare) is repealed, I am afraid I will lose my son.
If the ACA is repealed, I could lose my son.
Currently, the ACA protects people from having outrageous premium hikes or being denied coverage due to pre-existing conditions. It came about not long after Pip had his liver transplant so this is something I have never had to fear until now. Never even gave it a second thought.
Pip has great coverage right now through his dad’s policy from work. I’m not worried about him tomorrow or next year or even ten years from now. He is healthy and happy and hilarious and handsome and I predict that will go on for some time.
But, some day, if Pip keeps thriving the way he has been thriving, he will age off of his dad’s plan. Possibly at 23 and not 26 if that ACA provision is repealed. And he may be able to get coverage through a job…OR he may lose job offers because they won’t want him on their insurance plan…OR he may be in any of the MILLIONS of jobs or internships that don’t offer insurance benefits and he may need to find insurance independently. And, without the current protections in place, he may face premiums he cannot possibly afford or flat-out denial. Or, quite possibly, a premium of well over $1,000 per month PLUS denial of coverage for anything having to do with his liver or his transplant.
Maybe rescuing an adult isn’t hardwired in us. Maybe we are only compelled to protect and aid children. But children, if our protection and aid works the way we want it to, grow up to be adults. And then we drop them like a hot potato? Is that how it works?
He will still be my son at 23 or 33. I can’t imagine that I will love him less once he can no longer fit on my lap. I want him to have the best future. And I want him to be able to get the care he needs if he has another complication. Because he’s beautiful and he is fixable and he is great about powering through adversity and getting on with his life. But getting through it has to be an option that is on the table. Without insurance, it could be completely off the table.
He tells me he wants to go to college for Hotel Management and then he will run a hotel and make money for his family. He says he wants to get married and have two children. Sometimes he tells me what he will name them. He says he wants to go to college near me so he can live at my house. I want those things for him, too. Is that too much to ask?
I am grateful if you heard his story on the radio or read the blog series and donated to his hospital but I need you to step up for his future. I know that some of the same people who have been moved by his story or have seen his photo on the side of a Speedway or have dropped change in a jar with his face on it, are people who support a repeal of the ACA.
I find those two things incongruous.
Look, either you care about him or you don’t, you know?
It feels like Republican lawmakers are telling me that we shouldn’t have saved him. To me, the repeal of the ACA is the equivalent of saying, “He’s a burden on society. He should have been allowed to die at six months the way nature intended. If he dies, our premiums will go down.”
It also seems like maybe many people don’t understand insurance very well so they say things like, “Sorry Jimmy Kimmel: your sad story doesn’t obligate me or anybody else to pay for somebody else’s health care.” – Joe Walsh (former Congressman of the great state of Illinois)
Well, see, here’s the thing. Insurance – all insurance – is a pooling of risk. Everyone pools in and the insurance pays out using what you pool in. I’m not suggesting you pay for Pip’s insurance. Pip will pay his premiums just like you do (or face the wrath of his Mama). But we are certainly suggesting that everyone be able to pool in. Does that affect your premium? Sure. A bit. Did your auto insurance go up this year? Most everyone’s did. Know why? Cause more claims paid out last year. You are paying for those assholes who text and drive and run into people at stop signs. Know what else you pay for on the regular? Shoplifters. You pick up the tab for shoplifters at absolutely every store you ever purchase from because store owners predict risk and set prices so they don’t have a loss. The difference is this: you may never have a car accident and you may never shoplift so paying into those things may or may not pay out to you. But one of these days, sooner or later, you will need your health insurance. It will pay out. If you are 40 and are diagnosed with an illness, if you are 50 and get hurt, if you are 30 and start a family, if you are 80 and have age-related problems, your insurance will pay out. And it will pay out with the premiums of the young and healthy. That’s how it works.
My son could very possibly go decades, maybe the rest of a very long life, with nary a twinge in his liver. If he is allowed insurance, he would pay into the pool and those payments would pay other people’s claims. That’s as it SHOULD be. It’s the entire point of insurance. Someday, though, he will need it – either for something liver-related or because he has a fascination with motorcycles and skateboards or because when he is 90 he falls and breaks a hip. And he should be able to have it when he needs it just as you should.
If we can save him, then we should save him. If we can protect him, then we should protect him. And your child, too. Or your mom. Or your grandpa. Even if at some point in their lives they cost a little more than others.
Is it suddenly no longer hardwired in us to do so if we think we can save a few bucks?
Sometimes I click on articles that tell me that the latest version of Trumpcare is even harsher to people with pre-existing conditions than the first. I read that there is a group of conservatives called The Freedom Caucus who will actually vote down any repeal that doesn’t deny coverage to my son. My SON.
And when I do, my throat tightens and my heart races and my mind spins. I look around and everyone is just going about their business like nothing is happening – as if the world is still spinning – but I feel it lurching to a stop. I want to scream out and tell everyone to stop everything and focus only on him until he’s safe.
So I write a blog.
Wanna Do Something?
Text your zip code to 520-200-2223 and they will text you back the names and direct lines of your representatives. So easy! Tell them everyone deserves access to affordable insurance.
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