We Can Do Hard Things, Monday 3/23/20

Fantastic Depiction of the Solar System, 19th century

I'm trying to remember what I wanted to write about today, but I just can't right now. I spent hours today doing virtual teaching, and I am beyond grateful for the precious children I teach and the wonderful folks who run the school and gave me this job. I took a walk through a largely deserted Los Angeles. Every person I passed gave me a wide berth. I love this city.

The POSPOTUS is going to gamble lives for the economy. "The cure is worse than the disease," he says. Meaning money lost is worse than suffering and death.










Everything, I know, is transactional in this culture.





My daughter's life is worth less than yours in the grand scheme of things. If she should get sick and need ventilation, she will be turned away if your "normal" child gets sick and needs ventilation. You know that, don't you? These are transactions that we must accustom ourselves to,



because






please, fill in the rest of that sentence. After the because.









A child injured or killed by a vaccine injury is a necessary sacrifice for the greater good. Children with disabilities shouldn't get funding for education because it takes away from those who are "normal." My taxes shouldn't go to a lazy ass person using food stamps to get by. If a person can't make it on minimum wage, he should get another job or another or another.










WE CANNOT LET THE CURE BE WORSE THAN THE PROBLEM ITSELF, the Master of Ceremonies said in the dumbed-down string of letters we call language now,













On another note, my ex and his lawyer continue to hound me. Now they want me to go through a job evaluation -- something that will assess my earning capacity and what the hell I've been doing with my time for the last five years. I'd cry but why bother? We're in a pandemic, and life as we've known it goes on. For some.



Being quarantined is a bit like hospital time. It's not really time but time passes. Those of you who've spent lots of time in hospitals might understand this weak attempt to describe it.



On my walk I thought about God and god and religion and those who have faith in plans and order. I thought about absurdity and randomness, about houses made of cards, about human fragility and frailty, about beauty and hope and pure, dumb luck.

I choose to be dogged with not so much hope or faith but a belief in things as they are in the moment and the experience that what comes next is utterly and completely unknown.

We Can Do Hard Things, Thursday 3/19/20

Hey, Reader, how's it going today? I confess to feeling an uptick of rage. It started about an hour ago when I heard about someone I know testing positive for the virus. (How are we going to write this word? Virus? Corona Covid? Covid-19? Should we be clever or ironic or matter-of-fact and terse? Maybe the uptick started last night when I went to bed and read a few emails from our old pediatrician's office. He's a private doctor who treats a lot of very wealthy families and celebrities. I "picked" him over 23 years ago because he was willing to work with my babies' vaccination schedule given Sophie's seizure disorder and the suspicious way it started. That's another story and we sure as hell aren't going into that now. I'm telling you this so you know why I took all three of my children, through their childhood, to a ridiculously expensive pediatrician. Don't get me wrong. I love the man and his staff.  Fortunately, we made very few visits to the pediatrician, but I can honestly say that in nearly every single instance,  I spotted a familiar golden face.



You know what? Forget this story. It's about self-tests for The Virus, how they were available for $250. How as soon as the newsletter went out, first come, first serve, another newsletter arrived and all the tests were gone, accounted for, paid for, etc., as if those tests were toilet paper, frantically purchased and hoarded.

Capitalistic concierge medicine.

My uptick of rage is related to my son announcing that several Lakers have The Virus or have tested positive, and I've been reading accounts from FRIENDS that they haven't been able to get a test despite having symptoms of  The Virus. So, all I'm going to say about this is the same thing I've been harping (that's a fine word, isn't it?) about for all the years you've been reading this shit that I write and that is that we can not call ourselves a great country when the country has such a huge disparity between those that are obscenely rich and the rest of us. Where celebrities and pro athletes and rich people have access to healthcare while regular folks do not.

Let's not even get into the disabled issue.

Read this.

When all of this is over, I think I don't want to hear another word about a celebrity or a pro athlete or really anything related to vast sums of money or adulation of those who have vast sums of money.

Up
tick





d


o


w


n


ward.











I did have a good morning teaching my dear students. One made a video for his final project related to the great Flannery O'Connor's short story "A Good Man is Hard to Find." I practically fell on the floor in a state of shock and awe when I watched it. Honestly. This 14-year old kid got that short story and created something original, weird and incredible. I wish I could share it with you and will let you know if he makes it public on Vimeo.

I also spoke with my therapist in a telephone session, and that helped me a lot. We compared notes on coping, talked at length about how we can do hard things, how helping others helps ourselves, how caregiving is a form of meditation and damn if I'm not grateful for the people out there working so hard to ease the suffering of others.

Thank you doctors and nurses and all those who help in the healthcare world.

Here's a poem by Lynn Unger:

PANDEMIC

What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
Center down.

And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.

Promise this world your love—
for better or for worse,
in sickness and in health,
so long as we all shall live.

Deli Healthcare and My 911 List

I took my baby boy Oliver to an appointment today at Kaiser Permanente. Most of you probably already know that this is an HMO and that Oliver is not a baby. He will, in fact, be 18 years old in May. Good god almighty. We have not been in an HMO in twenty-five years, but this year I downgraded his and my health insurance policies because I just could not afford another 35% increase in premium for the PPO that we were on with Sophie. Sophie stays on her Cadillac plan with MediCal as a secondary policy. 

Anyway.

Kaiser Permanente proved to be exceptionally -- dare I say -- efficient. We really, really liked the doctor we "picked." It was amazing, honestly, how easily everything worked -- a one-stop shop. We visited the doctor, moved to another floor and barely waited to get blood work and then another to pick up a prescription. We were out of there in less than two hours, and the co-pays were minimal. Honestly, if Sophie didn't require such specialized care, I'd be all over Kaiser for her care, too. I've always been terrified of managed care, but let's face it. We're all managed every single moment by the Powers That Be. When we went to the lab for bloodwork, we had to get a ticket with a number on it, one of those little scraps that you get in the deli department at the grocery store. That was maybe the only moment where I felt annoyed, but I let it go. So, after just one visit, I'm going to recommend Kaiser Permanente for routine healthcare -- my god, in comparison to literally ALL the other places we've sought healthcare (UCLA, NYU, Columbia, USC, Children's and Cedars-Sinai), it was the best experience. I'll keep you posted on my own physician visit which is coming up soon.

Now, let's talk about 911. We just dropped another Who Lives Like This?! podcast. This week, Jason and I had Dr. Rita Eichenstein on the show. She is a neuropsychologist and the author of a really great book. Not What I Expected: Help and Hope for Parents of Aytpical Children. Even if you aren't the parent of an "atypical" child (and this category includes children with mental health disorders like anxiety and depression, as well as diagnoses of ADHD), I think you'll find a lot of value in our discussion. What really stood out for me was some advice she gave to those parents with newly diagnosed children. Among many helpful tips, she suggested compiling a 911 list of people you can call when you need help and support. After listing these people, she suggests calling each of them and asking whether they'd be willing to be on your 911 list. I know some of you are thinking, well, duh, of course you'd already know who to call or who wouldn't say yes to being on the 911 call list? I'm here to tell you that, at least for me, it's hard to call people, to ask for help, to vent, to cry, to share grief and exhaustion. Especially when it's done, over and over. I think it would have been tremendously helpful for me to have made such a list early on in The Troubles and communicated what I was doing with those people I trusted to be on it. Does that make sense? I feel guilty when I call my friends with my latest woes, especially regarding caregiving. I actually don't even do it that much anymore and feel isolated (of my own making, I know) as a result. I do see a therapist regularly, and that is enormously helpful, but it'd be great knowing that certain friends had taken on the responsibility of being on call for me, beforehand. I know for a fact that many of us struggle with asking for help. This seems like a simple -- yet almost formal -- way to connect with others and to "allow" them or give them the opportunity to help us. 

What do you think?

The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

Vote, Baby

#healthcarevoter
#throwthemout
#resist
#nafacamo

We Will All Take Care of Us

A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home.  Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.

Read more and get the link to the podcast here

It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?

Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.

Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.

What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.

You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.

Rhetorical Questions, Part 465,789 with Photos

1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?

or

        Why is the process for finding, paying for and getting a wheelchair so labyrinthine?

2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?

or

     Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a               dissolving postage-stamp sized film -- make me die a little inside.

Jimi Hendrix Acid Tabs
image found on the interwebs

(HINT: It's not because of Jimi Hendrix or LSD)


These are rhetorical questions.


3. Why are we able to launch a rocket into space with a luxury car inside of it?

or

       Why does this make me feel weary?

Elon Musk's recent venture

4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?

Vintage photo of brain imaging equipment

5.  Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?


These are rhetorical questions.

Tiny little mother minds™ ask none but those.

Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

Alchemy and Anxiety

I don't know about you, but I feel so weird these days, so out of sorts, so self-conscious and aware and filled with adrenaline and disgust and anger and -- should I go on? I miss blogging, too. I miss marking my days here and the casual way I'd throw out some thoughts and observations, a bit of poetry, a rant or two. I'm not tired of blogging or of blogs, either. I am preoccupied. I am so afraid of normalizing that POS running the country, the sycophants that support him, those that still maintain we must come together. Come together, my ass. I'm as overwhelmed as every other woman by the toppling of the patriarchy, too. When is the head dude, though, the Sexual Predator in Chief, going to get his due?






I'm baking a lot of cakes. I baked this one:

Coconut Cake with Coconut Buttercream

and I made five of these:

Apple Toffee Crunch Cake with Cinnamon Buttercream

I made about a million of these:

yeast dough rolled in cinnamon sugar

It came out like this:

Cinnamon Pull-Apart Bread with Caramel Glaze

Baking, unfortunately, does not alleviate the stress of the Repubs screwing us, over and over, now with their new tax plan which is really another version of their healthcare plan, which basically reinforces the direction the Disunited States of America is going which is a plutocracy. I want to say f*^k all of them, but I tire of cursing.







I also made the most killer cinnamon buttercream.

Butter, sugar, egg whites, cinnamon

Honestly, that stuff is nearly sexual. A silky sweet meringue that takes butter and transforms into something that melts on the tip of your tongue, just a trace.

Alchemy.



I had my first paid gig at The Los Angeles Times on Saturday. Here's the link.


#gigeconomybaby

The Samsara of Healthcare

I was scanning through some old posts from a few years ago and noticed one that is particularly relevant -- STILL -- to today. It has to do with government and entitlements and the ongoing threat we face from Republican economic policies and a culture that is all too willing to sacrifice the vulnerable while exalting the already fortunate.

I don't know what to do about this and feel not so much defeated as overwhelmed with the ongoingness of it. I'm currently working with a health insurance broker trying to figure out our 2018 health insurance options as our current plan raised our premium by 39%, making it unaffordable. The capitalists love to talk about "consumers" going "shopping" for health insurance, and "competitive rates," etc. -- all that market talk, reducing us to numbers. I can tell you that scrolling through plan benefits, trying to figure out what coverage would be for Sophie's various needs, reduced me to tears, and I'm no wimp.

I maintain that access to affordable healthcare is a right. I maintain that we shouldn't be looked on as consumers when we access healthcare. I maintain that shopping for healthcare insurance is ridiculous, that despite my college education, formidable intelligence and decades of experience navigating all the systems of care, I am literally overwhelmed by it.

What, really, do I know with my tiny little mother mind™?

If there's anything to substantiate the Buddhist notion of samsara, I guess it would be this.

Here's the post from a few years back, and the article that I referenced in the first paragraph could just as easily be replaced by any number of articles and notices in today's newspapers regarding the threats to Medicare, IHSS and SSI under the current Republican tax reform proposals:



I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

You don't need a weatherman to see which way the wind blows

10.  Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

Timothy Snyder, Professor of History at Yale University, from On Tyranny: Twenty Lessons from the Twentieth Century 

Disabled activists put their bodies into the fight and were literally dragged from the arena and told to shut up by those who work for them. Others who work for them did nothing, and I imagine that is because they were disruptive, shrill, out of control. 

The activists were called a sideshow.

What have you done to help disabled persons and the families of medically complex children fight for proper healthcare for everyone?

We are doing this for you, too.

Yes, it's a drag to have to beg, to applaud even those who waffle around about doing the right thing, but we're the sort of people that know fatigue and disappointment in ways that you might not imagine. We're stronger for it.

Help.

Make calls.

Put your body -- your healthy body -- into it.

Be shrill.

Be disruptive.

See the way the wind blows.

Hilton Head Family Vacation

I don't even know where to start! If what happened last night hadn't happened, I'd probably have titled this post Hilton Hell Family "Vacation" instead of the more prosaic Hilton Head Family Vacation. Because of last night's vote by the Senate to NOT repeal the Affordable Care Act, and because I only found out about it this morning when I woke up in Los Angeles, (much to my shock because when I went to bed it looked like it was going to be the opposite, and I did go to bed filled with anxiety and dread, much like I've gone to bed for the last six months), I would have had a harder time getting on the old blog not sounding bitter and angry. As long-time readers of the old blog know, there is some pretty hard-core partisanship in my immediate family, and things can get very testy. I have a mother who is half Syrian and a father who is full Italian. Let's just say that the three daughters are opinionated, our progeny vocal and we're all -- well -- passionate.

It's a beautiful house, but it's not big and all of us stay there. It's tight and it's raucous.

Long-time readers of the old blog know that every year my extended family meets for a week or so at my parents' home on Hilton Head Island. We've been doing this for over eighteen years, and the kids adore the experience. My experience is, let's say, less joyful, but that's because for the first decade or so I brought Sophie along and have a bit of PTSD, I think (if I were an atheist, I would have become one during "vacation" on Hilton Head Island with Sophie), as well as this aching feeling that she will never truly be a part of these kids' lives or memories. That's a big, complicated feeling that those of you in similar circumstances will probably understand better than those of you who might have the fleeting (and somewhat accurate) thought that I need some gratitude or awareness of my privilege or -- well -- whatever.

The Progeny

The kids are all getting so big, and despite the geographical distances between us (Los Angeles, New York, St. Louis and Washington, D.C.), with social media and this annual get-together, the cousins remain remarkably close and are a joy to watch. Not only are they all, literally, beautiful, but they're also a kind and very funny bunch. We had many a laugh, particularly one night when we each used our Bitmoji characters and texted one another from the same room, with one text more clever than the next, all of us laughing so hard that we cried. 

O.K., I cried. 

I'm really proud to say that most believe my Bitmoji to look exactly like me:

Where was I?

The Big O with his drone

Genes are mighty strong

Family meals

The best-looking incoming freshmen in any university anywhere

My amazing 81 year old father with Henry

Beautiful Atlantic ocean

We're a big crowd on the beach (and those giant houses behind are not ours)

My sexy, adorable sister who fights in her home state for safer gun laws. You don't want to mess with her.

Look closely at what's in the lagoon right behind my parents' house. Scroll down for details.

I love this picture of me and my father. 

What I wore in lieu of actually screaming at every single person I saw in South Carolina that I suspected of being a Trumper

I showed them, right?

Ha. Just kidding. I felt desperate sitting out there on the hot beach, under a tent, watching our beautiful children play volleyball. I felt angry and nervous and anxious all afternoon on Tuesday, and when I checked my email and saw that the Senate was taking up the debate, that McCain had voted yes, I stood up and stormed off the beach and back to my room where I sat for the next hour, furiously dialing people through my Indivisible resistance app, speaking to constituents in West Virginia and Nevada. One 83 year old woman told me that she'd called Senator Capito every day for weeks, but she didn't think her voice mattered. I asked her to please call again, that her voice did matter. I hope it matters, I said. The calling helped me to feel sane and productive and less anxious, but can I tell you something? This whole thing has made me, generally not an anxious person, a very anxious person, often filled with dread and -- yes -- anger. The thing is that it's not only about me, about Sophie -- it's about so many of the people I've met over the last couple of decades and what I've learned about community and disability and vulnerable people. It's existential.

My beloved sons and I in the best light of the day

In the lagoon behind my parents' house

It was also Henry's 19th birthday, so we celebrated by going to a Mexican restaurant.

I won't show you the picture that my brother-in-law took of the my sistahs and I shooting birds into the camera. As Mary said when I showed her, I'd party with ya'll.

Speaking of Mary, I hope you wish her a happy birthday because today's her birthday and I love her to pieces.

What else?

I arrived back on the left coast and walked down the baggage claim and out into the not-humid Los Angeles air and to my love.

Waking up this morning to the good news -- well -- it was awesome. I know we'll still have to fight, but I'm ready and willing. The relief that I don't have to worry that Sophie's health insurance will be ripped away or her access to MediCal messed with, at least for now, is indescribable.  The Turtle put his head back in the shell, 45 is still tweeting insanities, and we've got a dude in charge of 45's communication who seems like he stepped out of the show Entourage. There's a lot going on, right?

How to Keep Sane During Phone Calls Related to "The Systems of Care"

 A dear online friend mentioned my "fuck you stare" yesterday, which I was completely unaware that I possess. Another dear online friend private messaged me that I did not possess a "fuck you stare" but had "beautiful black eyes" and "the weight of the world." She also told me that I had plenty of "fuck you" writing. I sent the former the photo above and the latter a message saying that the former meant no harm and that lately a "fuck you" stare at men in general was very much in order. I'm talking about YOU, John McCain and that clot behind your eye that you're dealing with by using the "best healthcare system in the world" that we provide for you, and YOU, Mitch McConnell and your bullshit healthcare bill that you've deferred yet again. The weight I carry, though, is far less than others' in this world, and I'm not talking poundage. I'm thinking we should all join together, find a good ambulance-chaser attorney and file suit for emotional distress related to the healthcare shenanigans in our congress.

This morning, I spent the better part of two hours on the phone using my tiny little mother mind™ to navigate the various Systems of Care. That's a euphemistic phrase for The Neurologist's Office, The MediCal, The Blue Shield, the Social Security Administration, and the Wheelchair Company. With the exception of a successful refill for The Drug That Doesn't Work But That Sophie Is Horribly Addicted To, the rest of the calls were unproductive fools' errands. I've been throwing around the term fool's errand a lot lately. It captures quite perfectly what dealing with the Systems of Care is like on some days. Most days. I won't regale you with details because I'd feel responsible if you felt violent as a result, and I don't have a way to dispense Tootsie Roll pops to mitigate any damages.

Anyhoo.

Today, I found myself unwrapping a Tootsie Roll pop and sucking it furiously while on hold. About when the insurance company's Automaton/human came on, I'd gotten to the sticky tootsie roll part and enthusiastically crunched the candy into the chocolate while dictating social security numbers and case numbers and weight and marital status and my feelings about John McCain's eye clot.* Just kidding on the last three. See below for thoughts on the last. Where I ended up after said conversations was Brazil,** where I was given a list of different numbers to call for seemingly intractable problems and issues. I placed those numbers in a little pile on the hot pink plastic file bin on the top of my desk, right under the Shrine of Doodads and Tchotchkes.

The Tootsie Roll pop helped which probably means I have some kind of oral fixation issues.

Actually, it helps to curb invective so I can work on my "fuck you stare."

What also helps is to surrender and call it a day even though it's before noon.

What are ya'll doing today?












* I know I'm not alone in remarking on the irony of the estimable Senator McCain who suffers from a clot above his eye and who is currently getting excellent (The Greatest Healthcare System on the Planet) healthcare, gratis (thanks to his bosses, US), which has pushed the "healthcare" vote off yet again (because his vote is said to be a resounding YES). Imagine my "fuck you stare" here.

** I can still conjure the feeling I had after seeing the movie Brazil, not only because my tiny little mother mind™ has a memory like a steel trap, but because the events of my life mimic them nearly every day.

*^%#@&*(^*#!!!!

Sophie at school
photographer: Page Jackson

Good Lord, I'm feeling blue. And anxious and agitated and lazy and enervated, all at once. It might be because Sophie is truly done with school, and I haven't properly "mourned" that or reckoned with it or processed it* or whatever other 21st century method there might be to deal or not deal with it.

Anywho.

It might be reading about Trump's "victory" at the Supreme Court this morning. The Muslim Ban thing. It might be all the begging we're doing around the Ass Hole Care Act that's wending its way through the Senate. It might be the gross feeling I have, pretty much all the time, when I think of those people who support the Pussy Grabber in Chief, most of them people in my distant past who were as stupid then as immoral now. Some of them are people that I love, and there's the rub.*

It might be the literal caregiving of Sophie who has a bit of a cold and cough, is drooling excessively, not sleeping so well and helping to generate the kind of ambivalence that I hate admitting to -- that I'm not cut out to keep doing this, day in and day out.

It might be that I just finished a novel that I felt compelled to keep reading even as it made me feel like taking a shower every few paragraphs. It's called Fates and Furies by Lauren Groff. I read so much about it, including the tidbit that Obama loved it. I'll say that it's a very good read, but it's leaving an awful taste in my mouth -- much as Gone Girl did and A Little Life. I actually hated both of those, however "well-written."

I need a novel that will cut me to the quick* and not make me feel all slippery, not make me collude with decadence. I'm tired of the overwrought.

I'm only one week out from an amazing vacation, too, and perhaps that's at the root of my blues -- Canadian blue at the end of my fingertips, soon out of reach entirely.

The view from the seaplane we took from Victoria to Seattle

Sundown in Victoria

Wind-blown in Port Angeles

The Bird Photographer doing his thing in a meadow of daisies

What's up in your neck of the woods?*











*Cliché

Hand-Outs

photo by Carl Jackson

Over the weekend I went with The Bird Photographer to Point Fermin near San Pedro to watch the peregrine falcons feed their fledglings. Like I said in a post I wrote for Cerebral Palsy Foundation last month, I wasn't aware of the incredible variety of birds that are among us nor their fascinating habits, until I started hanging with him.  The picture above is what's called an "aerial transfer" from the male to the female. That's a small bird, I believe, that the male has just caught. He heads back to the nest with that in his talons, the female flies out with not a little ruckus, he drops the prey in the air, and the female catches it mid-air and takes it back to the nest. It's insane except it's not. It's nature.

I don't feel like extending the metaphor, but I'm nothing if not an endless weaver of the metaphorical. Think precision, ruckus, prey, nourishment, nature, nurture, violence.

I'm struggling to deal with Sophie's new normal that might not be normal. She isn't having many seizures as the CBD seems to be really helping with those, but her general well-being isn't so great. I have no idea what's going on, and if I hadn't been doing this for so long, I would be up all night trying to figure it out. Figure it out. There's no figuring out, sometimes.

If something can be done about the situation, what need is there for dejection?And if nothing can be done about it, what use is there for being dejected?

Shantideva, 8th century Buddhist master 

It's weird to be conscious of and actually feel the enormity of the task at hand and the accompanying fatigue. I'm struck by how everything is the same, by how we're constantly learning and unlearning and re-learning.

The personal is political, isn't it? Isn't it?

I feel, still, great anxiety and even greater anger when I think about our government and the man we're supposed to call President. What a piece of shit. It looks like the country's "budget" will be balanced on the backs of the sick, the poor and the disabled. Hundreds of billions of dollars handed from one oligarchy to another so that the masses can build the weapons of war that will be used to destroy the masses in other countries. What a load of bullshit. I think it's safe to say that the funds Sophie receives from the government, procured through an aerial transfer that is much like the peregrines' pictured above, are not a sure thing. Whether the cuts come or not, the fact that they're argued about by those in power, the fact that we must continually justify them, fight for them,  beg for them is cause for a sort of irrevocable anxiety that ripples out of the body, my body and into the air.




Read THIS.














* Peregrine falcons are the fastest animals on the earth and can reach speeds of 240 mph. At one point, due to the effects of the chemical DDT, they were on the endangered species list. The entire American peregrine falcon population experienced drastic declines due to the widespread use of the pesticide. It caused their eggshells to weaken and break and led the babies to die before hatching.Thanks to the Endangered Species Act, their numbers have soared. (source is U.S. Fish and Wildlife Service). The Endangered Species Act is currently under the chopping block for the Trump Administration.