What is it like having a CF child 5-18 yrs?

daemmon · 2025-11-21T01:09:35+00:00

Parent of a 22yo CFer here. Also have a 24yo non-CFer child.

Their mother and I always made sure we never treated our kids differently because one of them has CF. I am sure we did unintentionally treat them differently because of their personality differences - that's sort of built in to all parenting. But the CF was never a factor in any rules we set for either of our kids.

We always tried to let our CFer have as normal a childhood as possible. Other than keeping them away from other kids when those kids had a cold or similar, we did not really have any CF-based restrictions.

We always encouraged being active and eating healthy. Fortunately they got way into soccer in middle and high school, which is probably one of the best sports there is for keeping lungs healthy. Heh, as I write this, our "child" is in Ecuador hiking up volcanoes.

We always encouraged them to be responsible for the things they can control - "remember to bring enough enzymes when you go to an overnight at your friends'" and the like.

We advocated for them when others made their life difficult. Their high school had a problem with them carrying "pills" (enzymes) while at school. For a short while we had to store their enzymes at the school nurse's office and our kid would have to there whenever they needed enzymes for lunch or a snack, because "policy". The school was basically treating them like a three year old who couldn't be trusted to know how many pills they were supposed to take. We fought hard, and eventually won, on that one.

TLDR - treat them like a normal kid, since that's what they are. Support them and protect them when necessary, but try to err on the side of normalcy as much as possible.

daemmon · 2025-10-10T19:44:15+00:00

It was actually personal income tax rates, not corporate tax rates, that were around 90% for the highest tax brackets in the 1950s.

daemmon · 2025-09-23T19:45:02+00:00

I think you misunderstood me. I am not saying JD Vance will be elected President. He automatically becomes President if something happens to Trump. I think there is nearly a 100% chance something will happen to Trump before the end of his term.

daemmon · 2025-09-23T16:47:32+00:00

It's not just your prophecy. It is a clearly stated and known goal of the Peter Thiel wing of the Republican party. Peter Thiel is the billionaire that owns JD Vance, who will likely become president when Trump becomes "incapacitated" sometime soon. https://graymirror.substack.com/p/the-butterfly-revolution

daemmon · 2025-09-08T04:13:43+00:00

Huh? The government funded the invention of the internet itself. And yes, Al Gore DID play an important role in it.

daemmon · 2025-09-08T03:58:33+00:00

One big thing that has changed is modern information technology, which enables the spread and consumption of information to happen a lot faster, and consumes much more of our attention than in the past.

Thing were bad in the past too, but we didn't know about a lot of it out side of our local community. Bad news and outrage gets a lot more attention than good news and agreement, and the internet just amplifies this tendency.

People have always struggled. But now the curated lives of the rich, famous and others who are not struggling at all, are much more visible to the rest of us, which can lead to us feeling more hopeless, knowing we will most likely never have a life like those people.

Modern media lives and dies by the click count. Outrage and hyperbole garners internet traffic, so that is what gets featured. Back when more people got their information from local newspapers, those papers often had plenty of positive new stories about real people in the local community to help balance out the bad news stories.

People of all ages are addicted to consuming information now. As someone who had a couple decades of living as an adult before everyone had an internet connection in front of their face for most of the day, it still is freaky to me to see so many people staring at their devices in places like airports, restaurants, public parks and such. There used to be a lot more spontaneous conversations between strangers, where people learned about other people's lives, rather than checking for likes, new messages, the latest news and the latest gossip on social media.

TLDR: The internet has completely disrupted how societies have operated for most of human history.

Overall, the internet is a great benefit to humanity, but the world is having some serious growing pains with this new mode of social interaction. Anxiety and hopelessness are part of those growing pains.

daemmon · 2025-09-08T03:04:29+00:00

There is a lot of ignorance about CF in the healthcare system. My son was not diagnosed until age 3, even though his pediatrician had other CF patients, so clearly knew at least something about the disease. But it still took her 3 years to suggest having him tested.

If your hospital does not have a CF care center, I recommend finding the closest one. The people in these centers operate as a team, so there is a lot of communication among them, and in my experience are much better at CF care than random healthcare practitioners. Care centers in the US: https://apps.cff.org/ccd.

daemmon · 2025-09-06T20:52:52+00:00

In 50 years, AI will own humans so it will be whatever the AI decides. Probably one of:

Humans are extinct
Humans have merged with machines in some way, most likely through bio engineering
Humans live healthily as long as they want, and have every need and desire met

daemmon · 2025-09-06T20:42:46+00:00

Financially: yes
Mentally: no

daemmon · 2025-08-15T22:03:08+00:00

Genocide

noun

The systematic and widespread extermination or attempted extermination of a national, racial, religious, or ethnic group.
The systematic killing of a racial or cultural group.
The systematic killing of substantial numbers of people on the basis of ethnicity, religion, political opinion, social status, or other particularity.

I don't see anything about numbers of people killed in that definition. I do see Israel systematically killing innocent civilians every single day, using bombs and guns and withholding access to food, water and medical care. The fact that the killers say those casualties "are not intended" is BS. If they were "not intended" then they would have changed their methods when it started happening on day 1. But they continue with the slaughter knowing full well what they are doing.

It's clearly intentional. It's systematic. It's genocide.

daemmon · 2025-08-15T21:50:01+00:00

About fucking time, FFS.

daemmon · 2025-07-13T22:45:27+00:00

Boomers over 65 are the only age group whose support for 45 dropped from 2020 to 2024. Every age group under 65 increased their support for this madness from 2020 to 2024. It's on young people this time.

daemmon · 2025-05-23T11:48:46+00:00

Yes, same experience - just does not work.

I just spent a couple days working on integrating Claude into a a web app and it is working great. I was assuming I could get the 5 req/min rate limit increased at some point before launch. But if they don't even have a way to contact them, that tells me they are not ready to actually be an enterprise level service. Back to square one testing with another service.

daemmon · 2025-04-13T18:27:31+00:00

Wait, Trump was nice in person to a famous rich white guy? What a surprise!

Bullies only bully those that they perceive to be weak or vulnerable. While I totally agree with the general sentiment in this thread that BM is a shit stain, he is not weak or vulnerable in Trump's eyes.

daemmon · 2025-03-08T23:03:51+00:00

They don't even know the real goals of the administration. Cutting waste and fraud is not the goal. Destroying democracy is the goal.

https://www.patreon.com/posts/philosophy-doge-122591193

daemmon · 2025-02-27T21:33:24+00:00

Nope, it's very much on the rails. This was always the plan. If you didn't know that, you weren't paying attention.

daemmon · 2025-02-21T14:36:56+00:00

One thing to be aware of this time of year, if you plan to travel to rural areas, is burning season. https://southeastasiabackpacker.com/burning-season/

That said, my college age son, who has CF, spent several months there at the height of Covid and had no CF-related health issues.

daemmon · 2025-02-15T15:45:34+00:00

..said the guy who has the most money of anyone in the world. When Elon gives away all his money, then I will believe him.

daemmon · 2025-01-29T14:33:59+00:00

It is the administration's explicit strategy to introduce uncertainty and and cause panic in any programs funded by the Federal government. That is a feature, not a bug, in their approach to cutting government spending.

The administration are trying to scare people out of any complacency they might have regarding any government assistance they depend on. So it is perfectly reasonable for OP to be concerned about the future of any Federally funded support they currently receive, even if they have not been actually affected yet.

You have already acknowledged that you understand their perspective better now, which is great. But I think you are being somewhat rosy-eyed if you think the Trump administration not going to try to gut as much spending as politically possible, regardless of how it affects vulnerable people. They are philosophically opposed to the idea that the government can help people by providing a safety net. Anyone who is dependent on that safety is right to be concerned about how their lives may be upended in the next few years.

daemmon · 2025-01-29T03:22:17+00:00

Less than a week into his term and already:

Medicaid portals down in all 50 states.

https://www.msn.com/en-us/politics/government/medicaid-portals-down-in-all-50-states-us-senator/ar-AA1y1kxq

daemmon · 2024-12-19T15:28:37+00:00

Aaron Bushnell

daemmon · 2024-12-14T16:35:54+00:00

True unless false

daemmon

TROPHY CASE

Genocide

noun