Friday, December 28, 2018

Taking Care



I'm lying on my bed, next to Carl, who is going through his gorgeous photos -- birds flying everywhere, diving into water with perfect droplets making ripples, a whale breached in a sea of blue and my mind is lazy drifting except for one tiny fight there off in a corner, the corner of care. Care. Taking care. Sophie is getting her infusions of immunoglobulin this morning, her last treatment of the year and I've forgotten to tell Mirtha that she doesn't need to come until later because Nurse Hyo is here but they're all here and so this fight this tiny little fight in my tiny little mother mind™ commences, even as I lie in languor on my bed or because I lie in languor on my bed with birds and whales and nodding flowers. Everyone is always living their best life, I've said bitterly a few times in the last few weeks. And this is mine. The fight is small but it is mighty in that corner of my mind. Letting others take care of Sophie without feeling guilty, perhaps envious, even, of their facility. I stood next to Nurse Hyo and held Sophie's arm down, so thin that it really takes only two of my own fingers to span it, the vein so tiny yet so resistant. Two sticks and the rising bile, I turn my head away and curse the nurse in my mind, curse all of them or Them, with emphasis. Is that the smallest needle? I manage to get out through my teeth, the words float there between us, a rhetorical question that I instantly regret. The nurse is unperturbed, her face placid,  or at least I imagine her to be. She is taking care. The needle slides pokes yet the vein slips, you can see it under the skin yet the blood flows and she's in (in the body! the body of my daughter!) and deftly tapes over it, connects the bag of antibodies to it, this entry into the body, through the skin and impossible vein, the fragile body of my daughter. It's a strange confluence of the barbaric and something nearly futuristic except that it's now. I'm only now imagining the nurse's own mind filled with something other  -- her own birds and whales, maybe, the lunch she'll have later, how these people are trials to get through. How I cannot get out from under the blanket of care of my nagging dislike of its constancy of how it looms, always. A tiny fight in the corner, over there, even as I kneel in gratitude over here at the care at the gifts this life has brought or that come with. 

Sunday, December 23, 2018

Making Pies


My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:



The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!

So here goes on a list of caregiver podcasts that we love.


Ours truly
www.wholiveslikethispodcast.com


Lomah
www.lomah.org


Mama, Build Your Empire
https://mamabuildyourempire.podbean.com

Mama Bear
www.mapunknown.org

Learning Not To Swear
www.tedlyde.libsyn.com

The Accessible Stall Podcast
www.theaccessiblestall.com


Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.

Now, I've got to go make pies.

You could cry or die 
Or just make pies all day 
I'm making pies 
Making pies
Making pies 
Making pies



Tuesday, December 18, 2018

Here's the Thing



I'm loathe to use the word, but it's stress. The repeated whittling away, the curves belie the point so sharp I could peck through a vault. Why write it here? Why not? Perhaps it's Sophie doing better, knock knock knock, so the rest comes pecking, knocking, whittling away, soft skin yield.

All truths wait in all things,
They neither hasten their own delivery nor resist it,
They do not need the obstetric forceps of the surgeon,
The insignificant is as big to me as any,
(What is less or more than a touch?)
Logic and sermons never convince,
The damp of the night drives deeper into my soul.

Walt Whitman, Leaves of Grass




Saturday, December 15, 2018

Saturday Morning Three-Line Movie Review



If Beale Street Could Talk

Every scene in this gorgeous movie is a work of art, subtle and beautifully lit, suffused with warmth and love, and there are eyes everywhere, eyes that look out at you and eyes that you look into and eyes that look at one another. The movie is heavy, so heavy that you can't get out from under while watching it, the under that is the history of black people in America, the under that is white supremacy, a smothering blanket, and the director, Barry Jenkins, spares nothing in his literal spareness. You can hold your breath while watching it, you can feel the love emanating from the lovers, from the families, from the shadows and darkness, but you just can't get out from under the grief, the loss, the suggestion that love is sometimes just not enough.











More Three-Line Movie Reviews

Green Book
Crazy Rich Asians
BlacKkKlansman
Far From the Tree
Sorry to Bother You
RBG
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
Chef
The Immigrant

Cesar Chavez

The Grand Budapest Hotel
Gloria

Labor Day 
Philomena


Tuesday, December 11, 2018

On Being a Detective As an English and French Major



The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.

Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.

Remember two things:


  1. Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
  2. I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.

While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.

It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis. 

This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.

Anyway.

So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.


Friday, December 7, 2018

Friday Morning Three-Line Movie Review



Green Book

Something about Peter Farrelly's movie made me squirm, and I think you know why. It wasn't the truly great performances of both Mahershala Ali and Viggo Mortensen, both so easy on the eyes that -- well -- they could charm the skin off a snake, as they say, but when the snake is racism and a white man is interpreting it and there's all kinds of gloss and over-arching stereotype, I am not charmed. I am squirming in my seat, like I did while reading The Help and while watching it, too, and should I go on because I think you already get my drift and that drift is that we've got a whole lot more work to do and art to make if this piece of fluff makes anyone of any color not squirm in their seat.










More Three-Line Movie Reviews

Crazy Rich Asians
BlacKkKlansman
Far From the Tree
Sorry to Bother You
RBG
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
Chef
The Immigrant

Cesar Chavez

The Grand Budapest Hotel
Gloria

Labor Day 
Philomena

Thursday, December 6, 2018

Since Last Week


Where do I start? I got home from the hospital with Sophie last week on Thursday night and left at 4:30 on Friday morning for my first trip to New York City in about eight years, I think. I got a killer deal on two flights -- took Oliver along because he's just a kick-ass kid with a full-time job, finishing high school early and on to University of Arizona in the fall! Here we are bleary-eyed in the plane just before take-off.



We arrived in Newark and were picked up at the airport by my cousin Paula's husband Jim. We spent Friday night with them and their dear daughter Faith, and the next morning they drove us up to my cousin Philip's house so we could finally join all the other cousins and aunts and uncles for the annual Pittule Day celebration. Pittule is a Calabrian specialty -- basically, fried dough that is either sprinkled with sugar or stuffed with anchovies. Both are pictured above.

Here's me taking a stint at the fryer with my cousin Mary:



Here's a few more pictures from the afternoon:





My mom, 80 years old, Aunt Dorothy, 90 years old and Aunt Mary, 87 years old


My cousins Frances and Mary

The whole Famiglia

Matriarchs and Patriarch

Me and my cousin Philip

That's a lot of beautiful family, and I'm grateful for every single one of them and for the opportunity to get together with them, talk and bond and eat delicious food. I'm so glad that Oliver got to experience it as well.

I should end this post here, but you must know that I also went into the city and stayed with two of my oldest friends, Jane and Phil, in their beautiful home on the Upper West Side. They lit candles for the first night of Hanukkah. I also got to see my very oldest friend -- not biologically but from my junior high years and onward -- Audrey.


Friends for 42 years!


On Sunday morning I took a Lyft uptown to visit Sandra, a woman and fellow caregiver whom I've been close friends with for at least six years -- yet have never met. I could have wept when I finally did get to hug her -- and her son and husband. For any of you social media naysayers, I reiterate that these online friendships have proved to be some of the most deep and profound of my life in every single way.




Speaking of profound connections, I also had the pleasure and nearly unspeakable joy of finally getting to meet Rosemarie. I held on to her for an extra beat as well, just so grateful to find this person as beautiful and graceful in real life as she's been to me online.


I think I'll save the rest of my New York City photos for another post. We flew home on Monday night and on Tuesday I started feeling chills and a general lousiness that ballooned into some kind of horrible flu-like thing -- no fever or congestion but damn, I feel like crap. I haven't been sick in so many years, I guess I was due for something or another, so I'm not complaining.

See ya'll later.