Friday, April 17, 2015

A Year Ago Today

We lost García Márquez a year ago. This photo, still causing me to grin back, commemorates the famous result of his run-in with that thug Vargas Llosa. But yes, among the other things Gabo taught the non-illustrious readers in my family:

"Cease, cows, life is short."

“Cease, cows, life is short.”
― One Hundred Years of Solitude

© 2015 L. Ryan

I Disappoint the Maine Coon, Keeper of The Manor

Would that we were laughing.

The home health aide who has been with me for about a week has fallen in love with Buddy the Outrageously Large Maine Coon (Forever Kittenette) -- click on the link and you'll see the fun of those days not so long ago,  before hospital beds 'n such, when filling the pill container for the week meant watching Buddy get distracted by Little Dobby and... crinkly paper.  Anyway, she calls him her "dog," and he actually sits and makes obscene google eyes at her, even pulling off these quasi-sexual winks and head dips.

It feels an outrageous interruption to request a bedpan in the middle of their trysts.

In the rest of the feline world, Dobby continues to run for his life, with panache -- tail up, ears back, eyes aglow.

Buddy and Dobby, both, as well as Marmy Fluffy Butt, have avoided being drugged, and all three report happy lives, though feel underfed.

Buddy and his Loving Home Health Aide missed each other today, however, part of why our laughter was hypothetical, part of why he was on High Alert until just moments ago.  He may be part dog, this wonderful Maine Coon, just as we have genetically determined that Little Dobster is approximately 90% angel and 10% House Elf.  (Marmy Fluffy Butt defies scientific quantification.)

No one notified us that Loving Home Health Aide was going to be out, and so the key tucked under the drawbridge secret hiding spot nearest Marlinspike Hall's Bronze Entrance Doors went unused as Scary Home Aide banged her way in, waking the dead and those of us toying with that estate.

Fred had been up Doing Duty until dawn.  Loving Home Health Aide had the habit of letting herself in, having a few moments of private google eyes with "the dog," checking on me, then  making the most delicious rye toast and coffee you've ever enjoyed.  Fred could sleep in peace. Even I could drift off, if that odd occurrence came about.

This morning?  Fred slipped; Fred slid. Fred let in Scary Home Aide, asked me if I was "okay with everything," then fell back into what evolved into snoozy restlessness.

And Buddy, who would, even being a fearless pooch, normally hide in the presence of strangers, took up a big-eyed, large-chested stance on... my chest, peering into my eyes with huge question marks. "Defendor of The Manor, really?"

Scary Home Aide did nothing overtly Scary. She simply did what she wanted.  Heading into the closest medieval kitchen to "wash up" the the coffee cup and the plate I had dirtied, I heard no running water, no squishing feet (hard to do in a medieval kitchen!) and I measured the passing of over 20 minutes.

The bed bath was as if a novelty, and not to me, for whom it still is, but for her, for whom it is supposed to be a regular task.

But the things that led to the later need to call my go-to-guy good doctor due to ethereal blood pressure? A knife that would chill your blood. The cooptation of a big old box of my medications -- another unearthly amount of time spent alone with a box that needed only to be set down in my former office, left there, left ALONE there, deposited there in drug solitude -- oh, you get it?!  Weirdly, the thing the flattened my neurons was the repeated retiring to the Sitting Room, out of sight, "to read my book."

Loving Home Health Aide took time off, too.  There is not endless activity, fun, toe-twirling to be had in caring for a gimp in pain with the basic of human needs. She also has a slight affinity for cooking shows -- the spicier sort of profiles -- and, sigh, mistaking me for one of those educators who mistook her students for her own children.  I can talk that talk, and have my parenting opinions, but tend to respect parents over educators in that regard. So she mistakes Buddy for a dog, me for a parent, and I make the perennial mistake of hoping a hiree is a friend.  We may all be in the right, though there is some certainty in the Maine Coon remaining a cat and me resting childless.

However, Loving Home Health Aide sits by the hospital bed, comfortable in a rocking chair, and making use of an ottoman if she (or Buddy) chooses.  Respectful of Fred and how much of this whole endeavor aims to reduce noise and increase his potential for rest, she stays nearby, you know, where she is needed?

So what is wrong with me that I could not just say any of the dozens of assertive things to Scary Home Aide that would have rectified the maladaptive situation?  One was that she made it known pretty quickly how close by she resided. Two is that I am something of a wimp around certain sorts, even when I am paying their meager salary.  I also kept thinking dumb stuff like, "You're a dumb gimp and this just exemplifies that."

Buddy kept singing into my ears that Loving Home Health Aide would have called Fred first thing and kicked her to the curb... and we all could have used our litter boxes and bedpans, had kibble and practiced winking and giggling.

I love the way Dobby keeps hanging in there. "Here I am, back here!
The older one, wiser! Halloooo!"

© 2015 L. Ryan

Wednesday, April 15, 2015

The Wide Skirt

Some deaths, passings, going "bye-bye" -- the bigger saying "helloooo!" -- I sometimes imagine the first truly cleansing rush of Universal Wind (imagine an Infomercial Exfoliator's Honest Finest: not to take off your fine skin, but to smooth it, finally, as one fine sand paper, no edges, woo hoo!

Sometimes I think of the sweetest, kindest waters to the face's corners as they meet, say, ancient, worked, twirled, and twisted, twined -- for God, karma, and ant forefoot's sake, all -- to become in one non-magical wash, The Shade.

If I take a few days, it's nice not to have to explain all that.

When Joe Cocker died, I'm sure you barely recall my visceral cry, meaning: "Damn it, I never got to writhe with him and do the inexplicable struggle to turn out the light and impart only his meaning to the rocking mic, his roll to the music," and so it was this, from the gut, lazy,
no. no. no!
that really crept out and was over.

I sat and stared at the NYTimes Breaking News Alert about the death of Günter Grass, possibly thinking from, of, and in my favorite depth: nothing.

The New York Times


BREAKING NEWSMonday, April 13, 2015 6:57 AM EDT
Günter Grass, German Novelist and Social Critic, Dies at 87

No, I'm thinking of us,
huddled in a field.

Me, on an L-shaped, huge porch in the Philippines, needing a place in all that hugeness -- rice paddies, stepped-mountains, purple skies, incoming afternoon rains, my house -- to disappear.

[Oh, I violate all sorts of things by offering you a tripartite .pdf access... but HERE ]

Because all that mattered were the stories of progeniture, passed through asylums 
and carnies, 
hot potatoes and grandmothers. 

All that mattered was:

The Wide Skirt

uploaded to YouTube by KineticProse

Less of a creep-out-and-gone than not boogying down-and-out with Joe Cocker?  
That Rothko may have painted for Grass.  

I had my moments, my many moments, of weakness, these past few days, none of which can I slough upon Günter Grass, but it did bring half a grin and enough of something to the other side of my rough and discolored face, longing for wind and water to remember what most of us do. 

And it is not this weaker of the color-blocks, no matter how much more Bunny might have reprieved a nation by penning a title to the back, bringing the faraway cost to a less chilly 41 million, and a more imaginable, alterable brilliance to their own rooms.

"Sotheby’s Offering a Rothko Once Owned by Bunny Mellon"

© 2015 L. Ryan

Pray for Jessie Claire! Do What You Do So Well For Jessie Claire!

Oh, Dear Ones, I've been raising Cain.. cane...?  I've been making noise over the Duke Blue Devils, over my inability to stand up from this wicked hospital bed, to get to the persnickety bathroom, over our failure to make it on time to the doctors' blessed appointments, over our equal failures to get the felines to obey the feline rules of the feline household! Did I hear that they're pulling Blue Blue Bell Ice Cream?

Well, forget all our usual silly stuff.  This one night, let's even lay gently aside Grader Boob the Lumpy One, though we'll take turns, okay?  Code words: "Beloved Grump." Night?  Oh, however long,  All right, I CAN do that pray unceasingly thang, and cover Beloved Grump, always.  Just gimme a doggone minute.

There is a young girl who needs our prayers, our good thoughts, our best intentions, our most wonderful of wonderfuls, and if you carry such things with you as a matter of course, then give her your matter of course.If you know karma is what is, if you have been so blessed as to know what is, then go to it, my peaceful friend!

You're familiar, if you're familiar with this blog, with parental blogs guesting here who detail the serious health problems of their children in that marvelous format created for them, mostly to share news with family and friends, CaringBridge, you know it has spread as an interwebs' phenomenon, not always, in my opinion, in a healthy way, but mostly, for sure!  And behind the scenes, no doubt, CaringBridge is on the the ball.

Allow me to introduce Jessie Claire's mom's Robin. First a bee-yoo-tee-fuu-ool picture of Miss Jessie Claire, from the outside, showing an attitude that beats all: the love of another creature, freely given, gently offered.

And timely, too! Happy Easter (a little late)!
And here are some excerpts from Jessie's mom Robin who keeps an honest but upbeat, faithful to God, faithful to herself, faithful to her daughter -- faithful to so much I am often in awe.  If you take the time to read her journaling, through the years, you don't see much change in the faithfulness -- hence, the awe. But if you know the bravery in her honesty, in her writing the doctors' opinions, the many tests results.  I applaud her juxtapositions, done, I'm sure, with the help of many prayers, foot stomps -- whatever goes for a good Bianca Castafiore's aria in her home!*  (please see below, the very below)

By Robin Henson Jul 2, 2014 11:02am

MRA of Jessie Claire's brain showing Moyamoya Disease impacting  middle cerebral arteries. [Lisa's Edit: The x-ray is unedited, unchanged, as is it's interpretation. There is no way.]  Blood flow is white from contrast.  From the center and "branching" right is healthy blood flow.   From the center and "branching" left there is no blood flow. The cerebral artery is closed.
MRA of Jessie Claire's brain showing Moyamoya Disease impacting middle cerebral arteries. Blood flow is white from contrast. From the center and "branching" right is healthy blood flow. From the center and "branching" left there is no blood flow. The cerebral artery is closed.

Prayers Please
By Robin Henson — 23 hours ago

Before providing Jessie Claire's medical update, Jessie Claire wanted me to share this:    Last week Jessie Claire went to visit her Daddy at work.  She put on his "Deputy Director" badge and went into Senate Chambers at the State Capitol. Seeing the Senators vote on bills was educational, but that wasn't what made the day so special for her.  Jessie Claire was treated like a princess.  The Lt. Governor and several Senator's asked Jessie Claire if they could have their picture made with her, gave her gifts, and a quick tour of the chamber.  I was touched by all the people who said they have been praying for her.  Jessie Claire was quick to thank a few of these gentlemen for supporting childhood cancer and she bragged that she is a Rally Kid (Rally for Childhood Cancer).  

Recently, Jessie Claire has had lots of Easter fun starting with a Spring Fling at her old school, Brighton.  However, she has not felt great in days.  Every time we have been out of the house for 2 two 3 hours, Jessie Claire gets in the car, tells me to get her home because she is tired and does not feel good.  Friday morning, Jessie Claire's left leg was numb (classic TIA (mini stroke) symptom).  Something I forgot to mention last week is that I recently learned that Jessie Claire has been having TIA's (mini strokes) for quite some time.

Tomorrow morning, Jessie Claire is having an MRI for Brain Tumors.  The Boston doctor has added additional testing to check blood flow.  This test will help determine how quickly she needs the next brain surgery which will be done at Boston Children's Hospital.

Some people told me that thought the second surgery I mentioned last week was on the left side of the brain.  Although the left side has arteries narrowing, the urgency is with the right side of the brain.  For those who are new, Jessie Claire's right middle cerebral artery is completely closed.  In March of last year, Jessie Claire had brain surgery to try and create a new source of blood flow to the right side of the brain.  We were told the surgery was needed or she would have a stroke.  Now, a year later, we just learned that the surgery did not work.

So, please continue to pray that God continues to protect Jessie Claire and she does not have a stroke. Please pray for wisdom with the doctors.  Please pray that the the brain tumors are stable.  And please pray that next steps are determined and administered quickly.

Thanks for all of your prayers.  Please share Caringbridge with anyone you know who prays. (Confession from Editor Lisa: This was when I felt compelled to write this funky post.)

[Me again, moi, who swore to minimal interruptions to Robin's perfected texts. Here is a journal entry I missed in what seems between day before yesterday and today, and as Southerners tend to, well, shout out: "Well, butter my buns and call me a biscuit!"]

Preliminary Glance
By Robin Henson — Mar 20, 2015 6:15pm

First, Jessie Claire wants to say "I have a soar-soar throat (from breathing tube) but I'm feeling better and spending the afternoon with my Nana".  I am going to take a minute to brag.  Yesterday was a very long day with some delays, but as always, Jessie Claire handled it beautifully with lots of praises from the nurses.

Yesterday we were told something that we are still trying to process...   but first we are praising God that the "preliminary glance looks good" and there is more blood flow than last year.  I asked lots of questions including "Is there enough blood flow to prevent a stroke? Any additional narrowing of arteries?  Are there any signs that Jessie Claire has had TIA's (mini-strokes)?"  Understandably, he has to "comb through the pictures" before he can answer these questions.  This is all we know for now.

Yesterday one of the doctors told me that he does not think Jessie Claire has Moyamoya.  He gave a good argument on how he came to this conclusion.  He believes Jessie Claire has neuro vasculopothy.  I read a couple of abstracts from medical journals to try and learn what this even means but decided that was a bad idea.

Yesterday was the first time I have ever heard the term "neuro vasculopathy".  However, less than 24 hours earlier, I made arrangements for a pediatric neuro-vascular surgeon and two other doctor's on his team, to review all of Jessie Claire's scans.  This doctor is the Director of the world largest and best Pediatric Neurovascular and Moyamoya Clininc.  They are located at Boston's Children's Hospital.    
This has been a year full of fear, devestation, prayer, praises, miracles, and JOY!  As always when we are confused,scared and nothing makes sense, God has gone before us to direct the path best needed for Jessie Claire-- His Path!

*"Ah! Je ris de me voir si belle en ce miroir!" -- Gounod, Faust

© 2015 L. Ryan

Sunday, April 12, 2015

to Jessie Claire... to Robin

Young ladies, I apologize!  Your blog post is coming. It was promised on April 9, and I ache to break my promises.

"Stuff" has intervened, but "stuff" cannot win out every day.

I have a wonderful aide who is going to ease much of my frazzle tomorrow.  It is clearly a requirement that one write of Miss Jessie Claire using the wise guidance of her mom Robin's high standards.

And, well, coughcough, there's my own undeniable provenance that has to be a tad toned down but still discernible.

So let this serve as a placecard for the promised celebratory post of the beautiful girl, protected, explained, and our prayers guided by her faith-driven mom.

I'm gonna say: TOMORROW!

And in the meantime, dear family, the good readers here, even if not yet knowing exactly why, know that they are with you, sensing the need, waiting for the details but trusting in the interim.


The "elle est belle la seine la seine elle est belle" magic show

© 2015 L. Ryan