Pacific and Atlantic

Yesterday, Oliver and I swam in the Pacific, me up to my waist in blue water with seaweed wrapped around my ankles and Oliver all the way in, laughing and sputtering. The beach was an uncharacteristic gray yesterday, but the water was the perfect temperature -- the kind of cold that takes you a moment to acclimate to but then restores to what, for me, I imagine is my primitive, free self. The Pacific is infinitely colder than the Atlantic, at least the Atlantic of the south, and much of the year it's frigid cold, but in August and September, it's just about perfect. I've morphed into a Californian, and my boys are natives. Oliver agreed with me that the ocean in Hilton Head, where we most recently submerged ourselves, is more like a bathtub than anything else, and while that easy, gentle warmth is relaxing, the bracing blue of the Pacific is what we really love. And there are no jellyfish! Oliver shouted to me, over the roar of the surf.

PTP and #don'tstarepaparazzi

Oliver and Sophie, September 2001

Oliver and I strolled with Sophie up to the CVS to pick up her Onfi, and while we waited for yet another snafu with insurance (8 pills cost just as much as 30, a whopping $70 co-pay) to be resolved that I won't bore you with, we entertained the open stares of two children. The fact that they were wearing their pajamas and their father was dressed in the long black robe with prayer strings hanging out didn't seem to affect their ability to openly gawk at Sophie in her stroller. The father apparently had no sense of irony, either. Both Oliver and I found this amusing, but when we walked home and ran into two little girls whom we see quite often in our neighborhood, as they ride their scooters up and down the street, yet who don't appear to feel any friendliness toward that freaky girl in the wheelchair, Oliver asked me whether he could have PTP. 

What's that? I asked, smiling kindly at the girls despite their rudeness. It was a glorious day, and I was happy to have gotten through the snafu at CVS. I'm planning on making this particularly delicious dinner tonight, too, a one-pot meal with shrimp and tomatoes and spinach and feta and lemon. I also bought a cheap bottle of Lambrusco at Trader Joe's and was feeling all happy hourish.

Permission to Punch, Oliver explained, and when we crossed the street, using the new curb cuts that we'd wrestled to get from the city, he pushed Sophie's stroller ahead of him, then stopped, turned around and yelled across to the girls standing, still staring on the other corner:

What's your problem? Why are you still staring. YEAH! Keep staring! He shook his head like an old man, and we when we rounded the corner and walked toward our house, I asked him whether he remembered the bedtime stories I used to tell him and his brother when they were little, the ones about Sir Henry and Sir Oliver whose gallantry and chivalry were a marvel and whose defense of their sister Lady Sophie was the talk of the kingdom. He said, Yeah, I loved those stories. Then I thanked him for being so strong and gallant and asked him whether he felt better, expressing his anger, and he said, Not really, and I said that's the bummer about anger, although sometimes it's justified, and this might have been one of those times. Then he pulled the toy handcuffs out of the drugstore bag that he had wheedled out of me at the CVS because we had to wait so long, and as we pushed Sophie's chair up the small hill to our front door, we joked that next time we'd grab those girls and those small children and handcuff them.

The Best Thing About This Post is the Book Angel Food***

Question of the Day:

When does being patient mean you're being an asshat and actually need to be impatient?

This morning I did the usual scanning of the headlines, not stopping at the inferno in Gaza, the contemplation of bombing northern Iraq, the alleged beheading of children in Iraq by ISIS with their heads on sticks, the drought in California, the increased security at USC due to the recent murder of a Chinese student -- shall I go on? I honestly didn't read further, but I did laugh aloud at an Onion headline and article that reported on a new Glaxo medication for people who just feel weird. Maybe we should just read the Onion and call it a day every day. I was thinking about people who don't "believe" in global warming or who continue to water their lawns into emerald greeniness in defiance of water restrictions here in southern California. I wondered if these kind of people just have an earlier snapping point than those of us who kvetch about global warming, feel dread about impending catastrophe, buy sulfate-free shampoo and eschew toxic laundry detergent and dishwasher soap. This isn't a judgement of them, just a wondering. This morning, as I showered in my Barbie bathroom, I looked up and noticed the paint peeling at the top of the tile which made me think that it had been a while since I'd wiped the ceiling there with bleach or Clorox and it probably harbored all kinds of mildew and bacteria, invisible to my eye. I don't think I ever think about cleaning or laundry or household tasks without thinking about environmental poisons, and then I feel not just exhausted but like an elite idiot who has way too much thinking time on her hands. Just freaking clean it with the toxic stuff, I thought, what does it matter? We're all doomed. Maybe the reason why some people don't believe in global warming is because they've just reached that breaking point a tad sooner than I. Or maybe not. Maybe they truly believe that God did indeed give us dominion over the earth and we're in charge. Or maybe they're just stupid. That was a judgement.

I've already done a bit of back and forth with both the neurology office and the company that is ordering Sophie's wheelchair, and it all calls for patience. Evidently, MediCal stops at Sophie's epilepsy diagnosis and wonders why she can't just be plopped into a regular wheelchair (the kind that elderly people order at airports to take them to their gate) so we can all call it a day. What is the medical necessity of this ordered wheelchair with its positioning and shoulder straps and what, exactly, are her disabilities beyond the seizures and severe developmental disabilities, including no self-awareness, no protective safety reflexes, being non-verbal and cognitively delayed (yes, we have the medical report from the neurologist, but it's not enough!)?We need more documentation! We need more paper! Patience. Patience. Patience. I shall be patient, even as I strain to show impatience. 

The Onion might have a headline like this: Woman Orders Over-the-Top Wheelchair For the Hell of It With Plans On Pulling One Over On Medi-Cal for Each of Her Children. She Also Submitted A Request for a Winged Chariot.

I feel weird today and should probably take one of those pills that Glaxo is selling.

***If you peer up at the left-hand corner of the photo above, you'll see a copy of my friend Brittany's novel Angel Food, open to its last pages. I will write a review of this crazy, beautiful, rocking book soon, but until then go and buy it here. It's definitely the best part of that scene photographed above -- the papers, the papers, the papers.

Asking for a Winged Chariot

So, about six months or so ago, I began what I knew would be a long process to get a new wheelchair for Sophie. Those of you who know of these things will nod your head and probably don't need to read any further because you probably have post-traumatic stress disorder and what I'm about to write will probably trigger whatever form yours takes. Those of you curious about the small stuff with which we caregivers regularly deal should stick around for pure entertainment. Have I ever told you that it's the small stuff that can actually break you when you've been doing the care-giving thing for nearly twenty years? Along with God never gives you what you can't handle, and Sophie picked you as her mother because she knew how great you are, and There's a place in Heaven for you and a better life after this one, Don't sweat the small stuff is a very irritating adage. Honestly -- I've got the equanimity thing down, for the most part. I actually don't really sweat the big stuff. I can go to bed each and every night with the passing thought that I might find Sophie not breathing in the morning, a victim of SUDEP, and actually sleep just fine. I can watch tens of thousands of seizures and feel like I'm being stabbed in the heart every time but still manage to speak calmly and even negotiate how many Oreo cookies the "regular" children will get after dinner. I've talked to my comrades, and they all agree that sometimes it is the small stuff that makes us sweat.

Anyhoo. (New readers, please note that I despise this expression and reserve its use for posts dripping with sarcasm like this one.)

Sophie needs a new wheelchair. Even though she can walk, she tires easily, needs total assistance while walking and has a form of cerebral palsy that prevents her from walking long distances. Her old wheelchair is ratty and uncomfortable and a tad too small. She needs a new one, in particular, so that she can ride a bus home from school in it and avoid the precarious descent down the stairs of the regular bus which is a lawsuit waiting to happen. I began the process of getting approval for the new wheelchair about six months ago when a very nice woman visited our home and took measurements and helped me to pick out the chair that would work best for Sophie. After that, the trouble began. Sophie has private health insurance (thank you, Obama!) and secondary Medi-Cal, which is supposed to pick up anything that the private health insurance doesn't cover. I don't even know if I'm able to relate here, clearly, how complicated this whole process has become. The order has to be denied by CCS (California Children's Services), which Sophie does NOT have, before Medi-Cal will even review it, and that paperwork has to be filed BEFORE the primary insurance is even consulted. I keep smelling bullshit but not strong enough for me to do my usual smoking bread stick shenanigans (again, new readers -- I have a long history of dealing with insurance companies and pharmaceutical companies, during which I generally am on hold and smoke a bread-stick to calm down. You can go to the search bar on my sidebar and find these posts, if you're so inclined). The Neurologist had to write a letter stating the medical necessity of the wheelchair, but this couldn't be a simple letter. It had to have progress notes and all sorts of folderol, which I'm sure is necessary because of all the MediCal fraud going on and which I'm happy to oblige, but after six months or so, I'm really just sweating and sweating a lot.

You'd think I was requesting a winged chariot.

I'd use some rude curse words, but I don't want to alienate the Powers That Be or mothers or fathers who might be reading here, so I'm going to reserve those words for next year when the whole hideous election cycle gets going, and we'll be subject to the likes of Rand Paul and Sarah P and that guy from New Mexico and all those people who want their country back and want the gays to go back in the closet or the brown children to go back to where they come from and women to keep their legs closed and everyone to pray at school and have the liberty to carry a gun into Target to kill the people who threaten them. Where was I?

Oh, yeah. Sweating the small stuff. In the grand scheme of things, getting a proper wheelchair for Sophie is really not such a big deal, nothing compared to the seizures, the risk of SUDEP, financial distress, the great, black cloud of what we'll be doing when she turns 22 and can no longer go to school. Those big things, though -- I'll deal with them as I've always done. They actually enlarge me in the best way.

The small stuff? The making a medical case for a chariot drawn by winged horses? The process to get a prescription for Onfi changed to the liquid form so that I don't have to use the razor cutter to divide the dose for the next wean (a PTSD trigger for sure)? The going to another IEP to state that Sophie needs a wheelchair bus, not a regular bus but now still a regular bus because the winged chariot is not yet ordered?Not only does it make me sweat, but dealing with the small stuff also has chipped away at nearly everything by which I used to identify myself: being sweet and kind and graceful and yielding. I'm now a point, very, very sharp yet not quite broken.

Crystal Hoping

I was drawn toward what seems to be either a Blue Storm or Crazy Lace agate ring yesterday when I wandered round the city post-fried green tomato, bacon and lettuce sandwich, so I bought it from the 50% off bowl. It fit me just right, and today when I looked it up, this is what it supposedly does if you're into all that crystal healing stuff:

Gray Agate is a grounding stone, bringing about an emotional, physical and intellectual balance. They aid in centering and stabilizing physical energy. Gray Agate has the power to harmonize yin and yang, the positive and negative forces that hold the universe in place. It works slowly but brings great strength. Its multiple layers can bring hidden information to light.

Psychologically, Gray Agate gently facilitates acceptance of one’s self, building self-confidence. It also aids self-analysis and perception of hidden circumstances. Gray Agate enhances mental function as it improves concentration, perception and analytical abilities, leading to practical solutions.

Emotionally, it overcomes negativity and bitterness of the heart. It heals inner anger, fostering love and the courage to start again. It is useful for any kind of emotional trauma. It creates a sense of safety and security by dissolving internal tension.

Here's hoping, right?

Fried Green Tomato BLTs, Rending Your Garments, Whimpering and the Beach

I ate a fried green tomato, bacon, and lettuce sandwich today, after cooperating and doing the right thing by getting a mammogram and taking care of my daughter, even when I'd rather not. The tomatoes were thinly sliced, lightly breaded and not greasy at all. There was also an egg with a perfectly cooked yolk on the sandwich, neither runny nor hard-boiled. And instead of regular, there was some sort of wasabi mayo, but not so hot that you felt it, and the bacon was thick and crispy. I suppose that was the extent of my not being cooperative today -- it wasn't exactly healthy, this sandwich, and Lord knows, I should be eating healthy so that I can continue to cooperate with life's vicissitudes. One of those vicissitudes is the frustration of not having the higher ratio Charlotte's Web to give to Sophie to see whether we can regain the seizure control we had when she last had it. The good people at Realm of Caring are working on it, though, so I haven't lost heart, even as Sophie's hands are clammy and she drops glasses and shatters them, looks to the right and freezes, jerks for a moment or two and then looks forward and continues whatever it is she's doing or thinking. She's being.

I also took Sophie to the beach this afternoon because I felt my dead grandmother-self coming on. As you know, she was prone to moaning and whimpering and praying that she'd die, and I was feeling a bit of the same -- especially the whimpering part. I know ya'll think I'm doing a kick-ass job most of the time, and I agree with you only if you recognize that under that resolve is a whimper, a tiny, high-pitched in and out take of air. The days of rending my garments are over, as are the tearing out of my hair or the sliding down the shower wall and crouching under the spray. The whimper, contained below the surface yet close enough to fuel some of my days is the new rend and tear.

Until you go to beach in Santa Monica on yet another glorious summer day --

Uncooperative

The only thing I focused on this morning when I undressed take off everything waist up, and prepared to have my annual mammogram, was the funny little sign in the dressing area and the sentence Thank you for your cooperation. The gratitude was directed toward those women like myself who, instead of tossing their used gowns in the bench in the dressing room (which was difficult to open, even when you realized that it could), dispose of their gowns in the obviously marked receptacles outside the dressing area. I immediately wondered what it would mean to be uncooperative in the general sense. Let's say I long to be uncooperative in the general sense. There are things unbloggable, and then there is lunch with Sophie, a peanut butter and jelly sandwich with a cup one-half juice and one-half water. There is my glass of water, filled to the top in a blue Moroccan glass, the last of its set to not be broken. There is a telephone call from a friend and there is a dog, Valentine, barking at the back door who needs to get out. I'll be right back, I said to Sophie and walked to the door to let the dog out. I heard the crash and the glass shattering and nearly simultaneously knew that Sophie had grabbed the glass, brought it to her mouth and then tossed it to her left, onto the floor. I ran back into the kitchen, cursing myself for leaving her for a moment, even to let the dog out, and carefully stepped over glass to unstrap her from her chair and pull her out. She was dripping wet but no blood. I picked her up and carried her out and put her down and walked with her to her bedroom, pulled off her clothes, struggled to pull them off because she wouldn't cooperate. She won't extend her arms when she's cold. I couldn't get her shirt off. She draws her knees up, tightly, to her chest. I couldn't get her pants off. Come on, Sophie, please, I said. Cooperate. I went back into the kitchen and began to sweep up the glass, heard the dog bark to come back in and -- where is this going?

Basically, I'm looking for opportunities where I don't have to cooperate. Do you know of any?

Thank you for your cooperation.

Communicamp, Summer 2014

So, this is Sophie's fourth year at Communicamp, and the tears flowed from the get-go when all the aides and relatives held up signs to the words to a very schmaltzy pop song during the final ceremonies. The show began with that demonstration -- a demonstration that underscored alternative means to communicate. Many of us did openly weep. But don't get me wrong -- Communicamp is not inspiration porn.

The two women who run it, one a very seasoned special educator, and the other a prominent speech pathologist who specializes in AAC, are the perfect combination of task master and nurturer (each one is a perfect combination). All of the children who come for two weeks to this beautiful spot overlooking the glorious, blue Pacific are severely disabled. Some are in wheelchairs and others can walk, assisted. Some are medically fragile and others are robust. All are non-verbal, though, and each child or young adult is encouraged to communicate and make progress over the two weeks of camp. I've written pretty extensive posts in the past about this amazing program, and you can read or re-read them here and here and here. Oh, and here. Be sure to read that last one because there's a bit of medical marijuana angst there.

Who knew?

I'm sorry to have such crappy photos this year. Don't ask me what happened, but it all looks like a blur.

Ugh. I hate that I didn't get Sophie hitting those switches at the exact right moment, cuing the younger kids to do their thing. She smiled so much during her parts of the show, and I believe really enjoyed herself this year. Compared to yesterday's photos, these pictures look like I was drunk or something. And I wasn't. Honestly. I just can't be perfect all the time. Ha.

Illumination

Those who've been reading here for a while know that my favorite painting is Fra Angelico's Annunciation, hanging at San Marco, a monastery in Florence, Italy, and that I wrote an essay years ago about it that was published online at Slow Trains. Tonight, I was sitting in Sophie's room with her at the most brilliant part of the day when the sun shines through her window and illuminates everything. I took a series of photos of Sophie that, to me, caught her luminous beauty perfectly.

Then I sat on the floor in front of her, and she reached over and touched my hair, played with it, tentatively. I sat in shadow, held my breath.

The poet Mary Szybist has a collection called Incarnadine whose poems are inspired by the Annunciation -- which for those of you who don't know, is when the Angel Gabriel descends from heaven and approaches the virgin Mary to tell her that she will bear the son of God. The back of the book describes the collection like this:

Through the lens of an iconic moment, the Annunciation of an unsettling angel to a bodily young woman, Szybist describes the confusion and even terror of moments in which our longing for the spiritual may also be a longing for what is most fundamentally alien to us. 

I don't know why this book, that painting came to mind when I sat with Sophie in the sunlight and shadows. Perhaps it was because of the great silence that is Sophie, her tentative grace, the way she is bathed in light yet at once so dark and mysterious, my own longing for the numinous, to bestow meaning and light despite that darkness and mystery.



Heroine as She Turns to Face Me

Just before the curtain closes, she turns
toward, me, loosening
her gauzy veil & bright hair --

This, she seems to say, this
to create scene, the pure sweep of it,
this to give in, feel the lushness,
this & just a little theatrical lighting
& you, too, can be happy,
she's sure of it --

It's as if I cut her heart-whole from the sky,
rag & twist & tongue & the now terrible speed
of her turning

toward me like the spirit
I meant to portray, indefatigable --

see how bravely she turns, how exactly true to the turning,
& in the turning
most herself,
as she arranges herself for the exit

withholding nothing, unraveling
the light in her hair as her face

her bright, unapproachable face
says only that
whatever the next scene is
she will fill it.

Mary Szybist
from Incarnadine

Cannabis Oil Questions Answered, #2

What would be the effects of this oil if you were to take it?

Sophie in motion

An anonymous commenter yesterday left the above question with the following statement:

 There was a story on our local news last night (Philly area) about a family who had moved to Colorado for their daughter (they are from NJ) and the mom said [she] dreaded "the first day she was a little stoned." I know you have stated that the concoction made is low in the psycho reactive properties and felt that this woman just put back any progress made to legalize this drug!

First I'll answer the question because it's an important one, and then I'll discuss the rest of the comment, because it's actually even more important.  I have tried Charlotte's Web -- a small amount, because it's liquid gold as far as I'm concerned, and I felt, literally, nothing. There are trace amounts of THC in the Charlotte's Web oil, and from my limited understanding of medical marijuana, I know that it's a whole plant product and that each component is essential for optimal benefit. This means that a small amount of THC, the psychoactive part of the plant, is necessary, but because it's only a trace, it's nearly impossible to get psychoactive effects unless you were to drink vast amounts of it.

That being said, there have been times when Sophie seems "stoned" or probably more descriptively, sedated,  after taking Charlotte's Web, particularly in the early days when she was on a much larger dose of Onfi, the benzodiazepine that we are currently weaning. Many people have noted that the combination of cannabis and the benzos can cause sedation -- too much sedation -- and many have observed and noted that the children who do best on Charlotte's Web are clean of benzos. This hasn't been the case for us, though. Sophie is still on a considerable amount of Onfi and has had a dramatic decrease in seizure activity (95%). We hope that as we continue to wean her from the Onfi and then the Vimpat, she will improve even more.

That being said -- and perhaps this post could be sub-titled That Being Said -- the oil needs to be shaken quite vigorously before it's drawn into the syringe and given. The mixture is oil-based -- things separate, it's darker, it's lighter, etc. When Sophie has appeared "stoned," I figure it's because she actually received a bit more THC in that dose than she might have if I'd shaken it better or it's from the bottom of the bottle and a tad more concentrated.

That being said, I am of the mindset that being a "little stoned" is not something that anyone should be concerned with as far as our children are concerned. Given the numbers of drugs that these kids have been on, the debilitating side effects, including dizziness, nausea, headache, sedation, agitation, depression, suicidal ideation -- the list goes on and on, not to mention THE SEIZURES -- being a little stoned might very well be a positive, if you get my drift. At the very least, it pales in comparison to the dangers of current anti-epileptic drugs that children and adults with refractory epilepsy have taken for much of their lives. As the mother of a child who has been on 22 drugs that have not helped her one iota but have, rather, caused her to feel, probably, like shit, for much of her life, I could care less if she feels a bit stoned every now and then.

That being said, I support the full legalization of marijuana, even for recreational use. I am not a pot smoker, have not, with the exception of that little bit of Charlotte's Web, smoked or ingested or otherwise partaken of marijuana in nearly thirty years. And thirty years ago, I never inhaled it, either.

That was a joke (the never inhaled it part).

That being said, I understand there's a real danger to going down the road of pure cannabis -- without THC. Keep thinking whole plant. Watch the videos I've posted about the plant. Educate yourself. I believe we owe the people on the front lines of legalizing marijuana, even for recreational use, enormous gratitude. They began this revolution, and I cringe when people say they don't support legalizing it. I feel like their reservations don't come from an educated position but are, rather, cultural and have no basis in science.

That being said, thank you for your question, Anonymous. It was an important one.

Cannabis Oil Questions Answered, #1 in a Series

How does Sophie take her medicine?

Charlotte's Web, as we receive it from Realm of Caring California, is an olive oil-based high cannabis/low THC product that we draw up from a small, dark bottle in a simple syringe (needle-less) and put in Sophie's mouth. It smells, sometimes, a bit like classic weed but is relatively flavor-less, and Sophie has no problem swallowing it, three times a day. She has had a lifetime of swallowing pills and does that, sadly, like a pro, but there's nothing like giving her a medicine that actually works.

Reader, if you have any questions that you'd like me to feature here on the old blog, please leave them in the comments.

Saturday Three-Line Movie Review

Get On Up

Before last night, I knew nothing about James Brown other than that he was an entertaining entertainer who screamed a lot, did splits on the stage in outrageous funky outfits, was a bit of a lunatic, had gone on a wild car chase from the cops sometime in 1988 when I was living in Nashville, TN and married to a musicologist (me, not him) and was called The Godfather of Soul. Now I know from the wonderful, rollicking biopic that he was an incredibly complex man whose mother abandoned him to an abusive father who then abandoned him to an aunt who was the kind madam of a whorehouse, where he became greatly influenced by gospel music and morphed into the James Brown that we think we know. It's hard not to smile throughout this movie while you're nodding your head, wiggling your hips and tapping your feet, thankful that a man with so much talent can emerge from so much hardship and sorrow and make his complex mark, for better or worse, on a world that essentially remained oblivious to how he got there.












More 3-Line Movie Reviews

Begin Again
Chef
The Immigrant
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

Riding in Cars with Boys, Part 43

I'm so grateful to have these boys. It's been my experience that boys are -- well -- simple. Today we drove about the neighborhood, doing errands, shooting the shit or breeze or what have you. Hey, Oliver! I said, Who do you want to invite to your poker/blackjack party? Since Oliver got back from camp, he's obsessed with playing blackjack, wants one of those poker sets and in an attempt to keep him happy and engaged with his friends from his old school, I came up with the brilliant idea of a small party. He loves the idea. We can have a bunch of guy food, I added, picturing buffalo wings, chips, something fried. I miss throwing kid parties -- it was something I did with a wild abandon when my three were younger. I'm not kidding. I love a theme, too. What do you think girl food would be, Henry wondered. He might always be thinking of girls. Probably gummy penises, said Oliver, and they both started cracking up while I narrowly avoided swerving into oncoming traffic and screamed.

Fresina

My cousin Joanne came down to Hilton Head this year to stay with her brother, my cousin Philip, who has a house a couple of doors away from my parents'. Joanne led a few of us in making and baking fresina, a regional sweetbread that our Italian family has been making for as long as I can remember. The dough is basically a yeast dough with tons of eggs, similar probably to challah, with the addition of black anise seeds. Black anise seeds are indigenous to the Calabrian region of Italy and are very expensive and difficult to find. We didn't have the black anise this year to make our fresina, and most would say that regular anise is a poor substitute, but that didn't stop our enormous gang from eating nearly the entire batch in a matter of hours. It was really a scene from the children's book The Little Red Hen, as only Joanne, Oliver, Charlie and I helped mix the dough, watched it rise, shaped the fresina, let them rise and then baked them, while the rest of the cousins played cards, went to the beach or napped by the pool. The moment they came out of the oven, though, redolent of yeast and a faint licorice, the fresina were grabbed and wolfed down in seconds.

Here's Joanne, Mistress of Fresina Ceremonies:

There's no time here to really describe how particular Joanne is when it comes to recreating these Italian traditions. Suffice it to say that she's militantly clean. The dough is kneaded in a pot in the sink, because that's the way my grandmother did it. Despite the huge kitchen in which we worked, we kept to the tradition, a pot in the sink, because that's the way you do it. 

 Here's Joanne, scraping the dough off the wax paper that lay on top of it for the rise. Nothing is wasted.

I was proud of Joanne for letting the guys shape and roll the fresina. In the past, her militancy and cleanliness have prevented this. I think she realized very quickly that these guys are little Italian-blooded pros.

When Joanne asked for a clean sheet, again -- that's the way we do it, my father brought her one and told her that he'd taken it off the bed, and when she was finished, she could put it back on. This is probably tradition as well, and I can imagine my credulous grandmother would probably have screamed in horror and begun to pray if the same joke was played on her. Constant badgering and joking is still how we do it. Here are the shaped fresina ready for a second rise and then baking.

Here's my father and Joanne, probably arguing over the clean-up.

The finished fresina are pictured at the top. We spent a few minutes debating on how many to split in half and then re-bake, because this version is particularly good for dunking.

'
My father evidently got a hold of most of those and stashed them somewhere in his bedroom, along with the home-made soppressata that Giuseppe, Joanne's husband makes, a knob of mozzarella from Arthur Avenue in the Bronx, and his personal beach chair. You have to take these kinds of precautions when there are 24 people roaming about your house for a week.