Panama 2019 Day 16: Being a Mother of a Child with Complex Needs

Friend and regular reader Randi has a daughter, now an adult living in a group home, who since birth has had complex medical needs. Given Fani’s experience, I asked Randi if she could share with us what it’s like to hear potentially serious health information about your child from one provider, only to be told shortly after “Oh no, wait, it’s all good.”

With her permission, here is Randi’s response.

It is difficult navigating the medical system and when it is your child, it becomes all- consuming. One time we received news that Jamie’s kidneys were not functioning and she would go to the top of the transplant list and receive dialysis in the interim. I remember feeling sheer panic and heartache for my tiny daughter. I did not want to have to be an “expert” in kidney disease, along with all the other medical issues that Jamie had. The lab results were incorrect and her kidneys were fine. The relief was overwhelming. I had held it together during the crisis, but I fell apart when we received the good news. There is no greater pain than receiving devastating news about your child and no greater joy than learning that she is actually going to be fine.”

Gloria and Sally and I ran into Fani on Friday morning in the Super 99 where she works. Fani was beaming, and gave us big hugs. Gloria says Fani has not slept properly since receiving the news a couple of weeks ago that Gabrielito might have further heart complications. She stayed awake watching her little boy breathe.  At least for now, that anguish is gone.

Thank you, Randi, for sharing firsthand what it’s like to mother a child with complex medical needs. You speak for Fani and many other young mothers here who try to navigate a system that is not always sympathetic to their needs and the needs of their children.

And a big shout out for Fani, who was not yet 20 when her little boy was born with Tetralogy of Fallot, who kept him alive until 18 months of age when he had corrective surgery, and who is raising a happy, smiling little boy.

Panama 2018 November: Lyft Driver

I think you could make quite the book out of a profile of Lyft drivers. The most unexpected story was a guy dressed as an airline pilot. He’s a backup, or at least sometimes. That means he has to stay within 30 minutes of the airport in case he gets a call. He lives north of the city and outside the zone, so instead of hanging around a coffee shop for the duration of his shift, he drives for Lyft. He only takes rides within the city or toward the airport, so he can drop off and still make his call.

My 4:15am Lyft driver for my Panama trip was a chatty guy, and I’m always curious about how people pull together the elements of a life. He and his wife divorced, but neither could make it financially on their own so they are back together living in his mobile home about 45 minutes north of the city. He’s happy because they both love the dog and now share the animal once again. He starts his driving day around 2am, when he picks up guys who’ve been drinking in downtown bars. At 3am he starts getting pings from bartenders on their way home. By 4am the airport calls start. By 9am when the downtown traffic gets bad, he’s headed home.

I’d say he was in his late 50’s, maybe older — but not old enough for Social Security. He’s managed a pizza parlor, worked security, done construction before the work got too hard on his back, and now drives for Lyft He likes the autonomy. He likes people. He said he’s just getting by financially, but it helps to have two incomes pitching in to pay expenses.

I’ll bet he represents a large slice of gig workers in today’s economy, and no wonder they don’t support Republican attacks on the social safety net. He’s counting the days.

Income Inequality

Americans don’t resent people getting rich. In fact, we are fascinated by wealth. Remember the TV show Lifestyles Of the Rich and Famous? The show was a big hit, with Robin Leach as host. The first episode aired in 1984; episodes continued until 1995.

Champagne wishes and caviar dreams.” That’s how Leach signed off at the end of each show.

If we don’t resent the rich and indeed harbor a secret hope that one day we’ll be one of them, we also have to believe that ordinary people have a realistic chance to move up. That’s a core part of the American dream.

It’s less and less true. Wealth is increasingly concentrated at the top, and there’s not much left over for the rest of us.

“The three wealthiest US families are the Waltons of Walmart, the Mars candy family and the Koch brothers, heirs to the country’s second largest private company, the energy conglomerate Koch Industries. These are all enterprises built by the grandparents and parents of today’s wealthy heirs and heiresses.

These three families own a combined fortune of $348.7bn, which is 4m times the median wealth of a US family.

Since 1982, these three families have seen their wealth increase nearly 6,000%, factoring in inflation. Meanwhile, the median household wealth went down 3% over the same period.

The dynastic wealth of the Walton family grew from $690m in 1982 (or $1.81bn in 2018 dollars) to $169.7bn in 2018, a mind-numbing increase of more than 9,000%.”

These wealthy families use their fortunes to hold sway over Republican Congressmen, and to demand legislation that protects their wealth in current time and their ability to pass on their wealth free of estate taxes.

Most Americans don’t even know what the word “plutocracy” actually means, but that’s what we’re becoming.

There are a few notable exceptions, like Warren Buffet. But mostly, rich families are intensely focused on getting richer, and isolating their wealth from the clutches of the tax man.

It wasn’t how democracy is supposed to work.

https://www.theguardian.com/commentisfree/2018/oct/31/us-wealthiest-families-dynasties-governed-by-rich?utm_term=RWRpdG9yaWFsX0Jlc3RPZkd1YXJkaWFuT3BpbmlvblVTLTE4MTAzMQ%3D%3D&utm_source=esp&utm_medium=Email&utm_campaign=BestOfGuardianOpinionUS&CMP=opinionus_email

LongRead on Climate Change

The anti-science Trump administration has basically deleted the words “climate change” from public policy emanating from the White House or any cabinet-level department. That doesn’t change the rapidly compounding menace from readily documented and observable environmental changes that threaten our way of life.

This is a very long article in the New York Times, but I encourage  you to set aside the time to read it. There was a time, 30 years ago, when a consensus was emerging on climate change and we had the beginnings of a strategy to manage it. That all fell apart, and now we are not only living with accelerating damage to the world we take for granted, but denial from our elected officials that those changes even exist.

As Trump often says to his adoring crowds, who are you going to believe, me or your lyin’ eyes.

I sent this article to my friend Linda, who is passionately committed to raising awareness and action to manage the effects of climate change. She asked what the article tells me, other than documenting an enormous lost opportunity. I hardly know what to say, other than that we humans seem to put off reckoning until the problem is at our very doorstep. Sea water might be coming up through the storm drains in Miami, but if it’s not coming up our storm drains we push the thought out of our minds. Pelican colonies are dying off by the tens of thousands, but our yards still have songbirds. Glaciers are melting at a record pace but it’s still really cold in a lot of U.S. states during the winter, so how can the planet be warming?

As the article makes clear, once the effects of climate change are at our doorstep, it’s much too late. Deep down we all really know that, don’t we?

https://www.nytimes.com/interactive/2018/08/01/magazine/climate-change-losing-earth.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=second-column-region&region=top-news&WT.nav=top-news

What Melania Should Say

I’m quite aware that I create a no-win scenario for Melania Trump when I excoriate her for being the least interesting First Lady we’ve ever had, then I critique her remarks on bullying at the U.N. Really, you might ask, can’t I acknowledge the woman doing anything right?

Probably not. The comparison with the intelligent, articulate, and broadly relevant Michelle Obama is too great.

That said, having Melania speak out on bullying when she lives with and defends Trump is simply ridiculous. I don’t know what she should talk about, on those few occasions when she speaks. But bullying? Nah.

 

John Boyne’s Next Novel: A History of Loneliness

When I find an author I like, I tend to read through everything that I can get my hands on by that author. I’ve just finished a second novel by John Boyne, entitled “A History of Loneliness”. One reviewer describes the book as:

A compelling study of an ageing priest… an excoriating portrait of Irish Catholicism and its precipitous fall from grace.”

– The Times Literary Supplement”

Irish Catholicism is my ancestry, at least the majority of it, although the U.S. east coast version. I like to focus on the good parts: the storytelling, the music, the pints in Irish themed pubs. But this ugly history around pedophilia, which as the novel clearly points out, tainted not only the victims and the perpetrators but everyone who should have known, did know, and failed to do anything over far too many decades. That indictment, for John Boyne, goes right up to and includes more than one sitting Pope.

This is a harsh and heartbreaking story, as difficult to read as it was difficult to put down. I recommend it.

Heartbreaking

While watching CNN on Monday night I saw an interview with the mother of Heather Heyer, the young woman killed by a rampaging white supremacist in Charlottesville. Ms. Heyer’s mother described getting word that the hospital was looking for her daughter’s next of kin, being driven to the hospital while frantically calling to get word of her daughter’s condition, being told the hospital had “no patient by that name” — because her daughter was never admitted, her daughter was dead.

Life is so often very, very hard. The interview with this mother, still dazed and shaken by her daughter’s sudden death, was heartbreaking.

Panama 2017: Apples with Peanut Butter

Part of what we all do when visiting Panama is to offer the kids new and different experiences — often around food. The diet here doesn’t include many fruits or vegetables. The kids who came to the pool yesterday — Naty, Jeorgethe, Josue, and Hazel — wanted sandwiches for lunch, and Gloria came to the grocery store with me to help pick out what they would eat. I should have taken a photo: white bread, a slice of cheese product, some kind of sliced ham product, ketchup, and mayo. Apple juice.

Emily asked if they would try apple slices with peanut butter, and I said “go for it.” They adore Emily, which was a plus. They don’t get apples here — fruit that isn’t indigenous to the climate is too costly. Nor do they get many foods that come in a jar, like peanut butter — again, too expensive. They all agreed to try. Hazel’s expression says it all. Naty isn’t doing much better.

Word has it you have to try new foods a few times before the taste appeals. Maybe next time.

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