perfect days

Last week the Big Angel had a soccer game; normally the H.J. accompanies him but this time the Big Angel asked me if I’d come. It was nippy, so I tucked a blanket into the Little Angel’s snazzy green wheelchair and over to the park we walked. I angled the Little Angel’s chair so he could both see the game as well as easily see the H.J. and me, and it was delightful and heartwarming and life-affirming to watch the Little Angel’s reaction to the game: he was smiling, repeatedly making eye contact with us, clearly so happy watching the kids run around and play.

The four of us then walked home together and I knew this was one of my life’s most perfect moments. It was just us four with no distractions, just us four together as a unit. It was twilight; it was brisk and breezy. It was wonderful.

Over the weekend the Big Angel came upstairs to find the three of us in my bedroom: the H.J. and I had just finished bathing the Little Angel (it’s much easier with two of us because he is so strong! skinny but fierce) and the Big Angel wanted to practice his lines from a scene in The Tempest. I had a very firm hold on the Little Angel as he has recently become crazed with putting books / newspapers in his mouth and using his teeth to rip up the paper, and I didn’t want him grabbing the book from his brother. Even though the Little Angel could understand none of it, only knew I was hugging him hard and restraining him, it was another perfect moment. The four of us were together in my bedroom, enjoying the Big Angel’s performance.

The H.J. and I enjoy watching the tv show House Hunters International — I especially like when it’s people with huge budgets because it feeds my aspirational hunger! One part of our enjoyment is the ugly Americans who bitch about having only one bathroom, or complaining that the rooms are too small. We yell all kinds of rude retorts at the tv. Stupid rich people. I’m kinda jealous, obviously.

Closed in my bedroom, the tightness of the four of us walking home together — these took up little space. I loved being together, all focused on each other. My three all-time favorite people.

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la reine, c’est moi!

The Big Angel and I have enjoyed watching Henry Louis Gates’ PBS series Finding Your Roots; I am probably more interested in the family tree portion, and the Big Angel in the genetic puzzle. Following the show’s credits I participated in a genetic study and received the results that I am 100% northern European. Well surprise to NO ONE.

However, we did learn that my children and I, courtesy of my mother, are direct descendants of Marie Antoinette.

When the Big Angel and I told the H.J. this, he sardonically replied “figures.”

We were in Boston, Massachusetts, celebrating the Little Angel’s ninth birthday when I received that e-mail. The Little Angel is nine! Long live the Little Angel. I will forevermore associate Marie Antoinette with Boston. Naturally. ‘Cause, any place where Bac Ho made Parker House Rolls and Boston Cream Pies should be associated with she of the “if they have no bread, let them eat cake” [sic] monarch.

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I like clothes

This week has been the boys’ spring break (holiday from school). Big Angel went to a Hunger Games camp, and Little Angel had a few days of his Special day camp (program for people with Developmental Disabilities — bless them). In Big Angel’s Hunger Games happened to be a classmate who lives up the street: we discovered this on the first day, so the mother asked me if we could carpool. She’s one of those for whom I’ve always had little respect, but listening to her complain yesterday definitely made her respect-free in my book. They are financially comfortable, have three children (the youngest of whom is an “oops,” about which the mother loudly brags [I wouldn’t, both afraid the children would hear and understand as well as how offensive to those who want children but are unable]), the mother doesn’t work (in or out of the home), they have a cleaning lady, and her parents live nearby so up they come a few times a week to help her with her children. She was boo-hooing because her mother was unable to come up more than twice this week … and her eldest two were in camp.

I rest my case.

But I am so excited about the near-completion of our bedroom and my spring and summer sartorial choices! Superficial, thy name is moi.

I have long loved Eileen Fisher, even though the fit of her clothes is inconsistent. Last year I espied the most delicious ultraviolet silk dress of hers hanging in Nordstrom. It was $338, so on the rack it remained. But then for some reason in January I was on the Neiman Marcus website where the dress was, only now $119. I didn’t think at all, let alone twice, before purchasing it.

Come to maman! but never, ever with ridiculous shoes like these

For whatever kind reason the Eileen Fisher company sent me a generous and unsolicited gift card, so I made good use of it purchasing this sweet double-breasted cropped jacket

which I think will look fantastic with the dress! I’m already planning on wearing it to the Big Angel’s fifth grade culmination ceremony.

And I’m pretty gaga for Fly London shoes, so I got these black suede peep-toe lace-up booties:

They are sinfully comfortable so I’m sure I’ll enjoy them.

I’ve also been feeling snakeskin, so found some cute flat sandals which will probably end up as my go-to this summer.

I’m having fun with asymmetry, wearing a side drape tank

with an elliptical cropped linen top over (a blouse I purchased and had altered so much it is no longer recognizable). I love, love this asymmetrical pant with panels attached.

Light Linen Asymmetrical Pant by Bryn Walker

I purchased new frames even though I just had glasses made in February — I want more than one pair of this prescription (progressive — I need both now!).

Little Angel has taken to pulling fecal matter out of his diaper and smearing it all over, his bed, his body, his mouth, when he has a BM at night. During the day I am able to prevent this by changing his diaper as soon as he goes. I don’t know how much more of this I can take. I’m having Special Needs onesies made (like a baby onesie, only sized for a big boy), but that’ll take a spell.

Ruffins new bed 5-14

the Special Needs bed

I may be incredibly banal, vapid, and vain, but I am grasping at straws here. His fantastic and safe Special Needs bed has nine million nooks and crannies, and that means in the middle of the fucking night I am cleaning and then disinfecting nine million nooks and crannies, in addition to bathing him and trying to keep him out of mischief (like cat food, kitty litter) as I do all this. (He has pica, which means he’ll put just about any- and everything in his mouth.) It is near impossible. He is turning into a nightmare to deal with, and I hate myself for thinking and writing that, as he is profoundly, deeply disabled, and he is profoundly, deeply sweet. He has no idea what he’s doing but I KNOW EVERY FUCKING THING. And I am so sad and so mad, and angry with myself for being mad about it.

So if I want to buy ridiculous clothes and shoes I figure I’m going to do it. This is my payment for cleaning poop and listening to stupid mommies who have no idea what it’s like to have to really work, what it’s like to be really scared, yet who have the gall to complain about their protected and pompous situations.

Eating my feelings is no longer helping me, and since I don’t drink I am honestly unsure what to next turn. Recreational drugs are a no. Being snarky is a big yes. Luckily at that I excel.

And how.

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Thank you, Feist

We are so wicked lucky. We live in a developed democratic nation with access to the world’s finest healthcare (for which we pay, but it’s right here). We have indoor plumbing (in our house alone we have five full bathrooms, which is insane and inane), water we can drink straight from the tap; we have made numerous home modifications to enable the Little Angel to continue to live where he belongs, with us, together, in our family home.

2-15 changing tablethe Little Angel on his new Special Needs changing table in his changing room

And yet, on one of these home mods he just had a violent GTC (generalized tonic clonic — formerly known as grand mal) seizure during which his airway was mechanically closed (we call these cyanotic seizures as his lips / chin turn blue from lack of oxygen). Because I know him and his seizures plus I was literally right there I firmly but gently lifted his chin to open his airway. My face was right in his as I then slipped my fingers into his hypertonic fists (too tightly clenched as the seizure caused his muscles to contract) and I heard and felt his first intake of air. His body was rigid and I held him, explaining that he was having a seizure, and reminded him what a remarkable, brave, strong little boy he is.

He’s amazing.

Many days he is now unable to stand without significant adult physical support (he leans against us), and cannot walk at all. But he’s in there! I see him in his eyes and his adorable little smile with his huge teeth.

At his school they are rolling with the punches: when he is having a day where he cannot stand / walk / sit up, they let him lie on the floor propped by cozy body pillows; they also have a special flexible video monitor which allows the Little Angel to do his school work whilst lying on the floor. His current favorite video to watch is Feist on Sesame Street. The first time, actually every time I watch this video with him I get weepy, so grateful to this singer (of whom I know nothing) that she altered her song and agreed to be so good-natured about singing it on Sesame Street. My precious 8 3/4 year-old son loves watching and listening to her, and maybe he’s comprehending something from her “1 2 3 4.” He’s definitely comprehending happiness.

We’re so fortunate. Little Angel is loved and taken care of, even if the medical care he’s presently receiving is no longer meeting his needs and Needs, at least I believe they are trying to figure that Medical Enigma out … or at least a palliative or some sort.

I’m so conflicted. On the one hand I am so terribly superficial, excited by my new sandals and nail polish. I feel such joy with my life, with what I do, with what I have, with who I am. On the other hand, I feel such despair over my Little Angel. I find I feel both these at the same time. Yin and yang and all that jazz.

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I kinda lost my shit last night with the Little Angel. He is, of course, adorable and sweet. He doesn’t have a willful bone in his body; his brain is incapable of emotional manipulation. He is utterly guileless.

I know all this. I have been his mother forever (well, his forever) and his number one champion and advocate just as long.

But goddamn it is still an exercise in exhaustion and frustration and and inordinate amount of time to get anything done. It literally took me over ten minutes last night to get his head through the opening of his pajama top and only half his right arm in the sleeve, like a human T-Rex hybrid. Over ten minutes. And I still needed to get the rest of his arm let alone his other arm through.

We don’t know if it’s one of his toxic cocktail (our appellation for his numerous meds) or just his wiggly brain which makes him so giggly. He already has severe hypotonia (think civil disobedience — just floppy, like a 56lb rag doll), and coupled with his giggling and rolling around makes it so freaking difficult to get many of his ADLs (activities of daily living, like dressing, toileting, bathing, feeding, etc.) accomplished.

First I bathed him. He is, naturally, absolutely water unsafe. I prefer to bathe him with me sitting on the edge of the garden tub with my feet in the water. The H.J. finds he gets better traction if he’s in the tub with Little Angel. Last night Little Angel kept flopping face-forward into the six inches of warm water, so of course I kept grabbing and righting him, over and over. It gets old and exhausting, and he’s giggling whilst choking on water. He has no idea what is going on, just that he’s having fun in the water.

I have to lift him into the tub and then out, and I find the out much more taxing: he’s wet and slippery, and I suppose I haven’t yet discovered the proper body mechanics for how to get his bottom on the ledge and then swing a leg over and then the other leg, all while keeping a firm, safe grip on that heavy, slippery, floppy body.

The struggle to put his pajamas on left me feeling ready to crawl into bed. And then he kicked me, hard, in the breast, right in my nipple (of course).

And that’s when I yelled at him what a horrible person he was.

I am not an idiot although sometimes I clearly act idiotic. I know better. I know the Little Angel is not his disability, and that he is not a horrible person, but his disabilities are horrible. But for fuck’s sake, after eight plus years of living with, of tending to these abrasive disabilities it can be hard to keep them separate.

But I felt like a real shit and I spiraled, quickly, downward, so ashamed of myself. So angry with myself. When the H.J. came home I told him what I’d yelled and how horrible I was feeling, and he laughed and opened his computer to play in his mountain biking forum. He doesn’t care. He doesn’t get it.

Hours later when we were in bed I reiterated how deeply disappointed I am with myself and how much I needed my ostensible partner in this to somehow absolve me, and he said “well, go to sleep” and he pulled out his tablet to play whatever his game du jour is. So he’s a bit of a fucker himself.

I hate myself when I lose control like that, when I yell at my children. I hate thinking or saying such hurtful things. While the Little Angel may not understand the words there is no doubt he could understand my tenor. I wish I had a safety net to help me, to give me a break so I didn’t reach that overwhelmed / overtaxed point. Unfortunately that’s not the world in which we live.

I’m not a Catholic but I partially understand their desire to confess. Since the H.J. wouldn’t take me seriously (and I am very, very serious) I feel as if blasting this into the ether will help me take responsibility, ownership, of my odious behavior.

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Charleston, we got along just fine

Charleston Pineapple Fountain_Waterfront_Park_chcvbPineapple Fountain

For the American Thanksgiving holiday we decamped to Charleston, South Carolina, and it was one of the best trips ever. Best Ever.

charleston usa-south-carolina-mapAt the airport we serendipitously found ourselves in the screening line of my darling nursing school friend, Amanda. Pure providence. As we queued and I stared at this gorgeous TSA worker I thought “I know that hot tamale.” I screamed at her and she screeched at me and we hugged and she helped us get through unscathed.

Charleston Amanda in airportIt was a non-walking day for the Little Angel – he was in a darling mood (bless him!) – and standing / walking were just not going to happen. Evidently the TSA is prepared for non-ambulatory travelers so he was able to go through in his cute red wheelchair and the screeners who patted him and his chair down could not have been nicer with Mr. Noodle (aka Little Angel).

pink heart

I thought my heart would explode from the happiness I felt seeing Amanda, hugging her. Amanda is one of my all-time favorite people, and I have been around the block once or twice … thousands. She made our intensive nursing school so much more fun, and studying with her that much more productive. She has four young sons (ten, nine, three, one), works full-time, and is studying to become a pediatric NP (nurse practitioner), so my hat is off to her.

As we went to our gate at the airport I said to my three boys that seeing Amanda, ending up in her line, was the best omen possible. Best Ever. Amanda set us up for a terrific holiday.

We four fell in love with Charleston, its gorgeous architecture, its fantastic and fascinating history, and the genuine kindness of the locals. Wow.

Charleston old town at dusk

You know, it’s real old, and now that I know all about its history I could go on and on, and knowing me I probably shall. Old habits and all that. Suffice to say it is not ADA-friendly, not in a rude way, but in an old building / cobblestone street way. Little Angel’s wheelchair went bumpety-bump down the streets and I think he kinda liked it … for a while. Getting in and out of some buildings was a chore, though, with one of us carrying him up the stairs and the other carrying the chair. Luckily we’re super-buff (cough cough). Chez nous, “super-buff” is how we say “soft and fat.” (cough cough / wheeze wheeze)

We quickly realized one of the first (and best) things to do is to go on a horse drawn carriage tour from the myriad providers on West Market Street (the City Market bisects Market Street). We walked along and asked the sundry hawkers when they were leaving: the one leaving the soonest got our allegiance. It’s a fun way to get a terrific, historic overview of Charleston. There are three different routes the City allows the tours to take, and it is pure luck of the draw on which route your tour will go (a city employee hands a route card to the driver once the carriage is boarded and already moving). We found it so fantastic the H.J. and I said we’d’ve loved to go on all three … but we’re not crazy (or rich).

charleston horse tour

I also think a walking tour is a fabulous first stop.

The Big Angel felt that visiting the Old Exchange + Provost Dungeon should be a First Stop. Besides seeing Amanda, I’d have to agree it was the best thing we did on this trip.  The Old Exchange building has an elevator to make it Accessible – thank you! The upper two floors are fine and dandy, but the real treat is in the Provost Dungeon, and our real real treat was Stephen our guide. He was so animated, so engaging, made the history so accessible and fascinating.

charleston old exchange

The Old Exchange and Provost Dungeon (dungeon is in the basement)

charleston provost dungeon

The Provost Dungeon

charleston old mapThis is the old walled city of Charles Town when it was the capital of the provisional colony of South Carolina. The building drawn at the letter G, with the half-moon shaped seawall, is The Old Exchange + Provost Dungeon: land has since been claimed two+ blocks into the water and many more seawalls built, so The Old Exchange is no longer waterfront. In the Provost Dungeon is a terrific scale model of the walled Charles Town.

We’d purchased a combo ticket for the Old Exchange and The Old Slave Mart Museum, and The Old Slave Mart definitely rounds out our Top Three of Must Sees in Charleston. It is small, down cobblestoned Chalmers Street.

charleston slave_market

Charleston slave fascinating-facts-presented

Charleston slave and-educational-panel

Charleston Old-Slave-Mart-Museum-l

It turns out there was much we did not know about American slavery, and what we thought we knew was the Hollywood version. Docents were there who could not have been more patient with everyone, offering insights, explanations, and answering questions. Because that was it, really: The Old Slave Mart Museum raised so many questions for us.

The H.J. and Big Angel were excited about Civil War stuff (not me and who knows about the Little Angel), so we went to visit the Friends of the Hunley (Civil War submarine which had multiple tragic endeavors …) in North Charleston (in the industrial section) and Fort Sumter (which requires a nearly hour-long ferry ride each way — so-so for Accessibility …), right next to the Aquarium (which we never visit). While I could have done without both, I have it on very good word (from my male relatives) that both were Must Sees.

charleston hunley-in-lab

The Hunley

Charleston aerial-fort-sumter

Fort Sumter

I was, naturally, gaga for the plantations. There are many from which to choose but in all immodesty I chose the best two: Middleton Place for its sumptuous gardens and Drayton Hall for its unrestored house. Middleton Place has a steep admission price (ouch) but it’s the more mass-market of the two, and it had clearly marked wheelchair accessible paths. Because Little Angel’s chair is an off-road model (we call it the 4×4 of wheelchairs), we did it all (well, not the stairs, obviously). The gift shop at Middleton Place has a few Middleton-related mementos but it really is more of an upscale tchotchke shop, which predictably I enjoyed. They had these fantastic horn necklaces (made from the horns of water buffaloes) for only $50, so I marched up to the darling gals working there and told them they were underpriced. And then we gossiped about other stuff. The gift shop at Drayton Hall is teeny and perfect, mostly filled with Drayton-related things, like pencils and bookmarks and mugs; I purchased the Little Angel a t-shirt there.

charleston ruffin shirt

As a girl I remember seeing in my mother’s Town + Country magazine the famous aerial picture of the Butterfly Lakes of Middleton Place, so to finally have the opportunity to see it in person was too much. Too, too much. Like everything built up in one’s mind for thirty or so years, it wasn’t quite as WOW WOW WOW in person, but these two months later I have to say I do feel so so so happy to have seen it in person. Of course, what really made seeing the Butterfly Lakes (or The Lungs – Big Angel’s appellation) fantastic was the company with whom I got to see it.


Most of the Butterfly Lakes are pictured below the gorgeously tiered path

Drayton Hall’s gardens have gone fallow, and by design the house has not been updated so we can see le vrai chose, not what the twenty-first century thinks it looked like, but how it actually was. Drayton Hall, like most everything else, was not ADA friendly and they didn’t want to allow his wheelchair in the building, but as it was a quiet day they relented. I’m glad they did (and they should have) as our tour guide was terrific and as we learned the history of the house we also discovered more about Charleston’s history.

A bitchy moment: it irked the H.J. and me that we were given guff about taking Little Angel’s wheelchair into the building when a) we’d been sold tour tickets by a sighted human being (meaning: not an automated machine) right there on the premises, so they could see visibly disabled small child. Then, there was another family in our tour group and they also had two young sons, younger than mine. It was evident (to the H.J. and me) that their eldest (whom I believe was eight) is on the Spectrum (of Autistic Disorders) — I hazarded he had significant ADHD, but of course I am not a diagnostician, merely judgmental. The pert tour guide told our collected group (the rest were retired white people) that we were to touch nothing, to sit on nothing, to not slide down the banisters, and yet what did each of those other boys do in every single room, on every single banister? Touch and sit and slide. Their father chose to ignore it and the mother was picking and choosing when she admonished her boys, but the H.J. and I thought “what the hell?” We were given a hard time because of our son’s pediatric wheelchair when he’s touching nothing, harming nothing, getting absolutely nothing from the tour (yet we bought him a ticket!), and these other two boys are willfully disobeying and, more importantly, their parents didn’t remove them. Uh, no.

Charleston DraytonHall

Drayton Hall, exterior


interior shot of Drayton Hall with original paint


We were also enamored with Angel Oak tree over on Johns Island, purported to be 400 – 500 years old. Note: there is limited parking inside the gates but plentiful handicapped parking inside, so if you have your handicapped placard do wave it at the guard and they’ll let you in

 Charleston Philadelphia Alley

Charleston alley

Charleston Unity alley

a few of the Alleys, Philadelphia, Stoll’s, Unity

I could have walked through Old Town for days, which I did, but I mean for even more days than we did. I was enchanted and wanted to see it all, more than once. Famed King Street held zippo appeal to us — it felt like The Grove in Los Angeles, California (fake ambiance) — and the bulk of the shops on the street are chain stores. Like, who in their right mind goes to Charleston to buy Sperry shoes or a St. John suit? Wait: three bright lights on King Street, 1) we purchased some delicious (and sweet) pralines in a candy shop; 2) the College of Charleston’s gift shop is where the Big Angel got his Charleston t-shirt and I a porcelain box with Randolph Hall on it; 3) and best of all from an eleven year-old boy I procured two palmetto roses which at present are hidden from molesting cats ….

charleston praline-patties-whaleypecan-230

charleston randolph hall porcelain

charleston palmetto rose

Charleston Graffito

Graffito, a bijou shop into which the Little Angel and I popped and then out of which we popped with a few lovely bijouterie, on East Bay near Unity Alley – note to self, even though I think I’m being awfully clever traveling with hardly any jewelry I always end up buying some on our adventures, including (somehow) in Glacier National Park, because I don’t feel ME without being weighed down …

And note to others: East Bay Street is filled filled filled with restaurants, at none of which we ate because the vegetarian offerings are slim-to-none, and we refuse to pay $20 for a vegetable plate. Refuse! Plus, you know, we were staying in a condo so we mostly cooked our own food. The H.J. was so excited about going to a Piggly Wiggly (southern US chain of grocery stores)

charleston PigglyWiggly-Logomarkhighres

but much to his sadness there are no Piggly Wigglys in Charleston … so we shopped at the local Harris Teeter, which while beautiful inside (reminded us of Draeger’s in Menlo Park, California) is not as cute a name as Piggly Wiggly.

charleston Harris-Teeter-Logo

Other than the trip itself, our sweetgrass basket was by far our most cher souvenir. The H.J. has been on a bread making kick for a month or so (and this is very, very odd because he doesn’t care for baking and doesn’t believe in recipes …), so he gets to serve his bread wrapped in a Randolph Hall tea towel placed in our sweetgrass basket.

charleston sweetgrass sign

Charleston sweetgrass stand


Charleston sweetgrass

sweetgrass baskets in the City Market

charleston randolph hall

Randolph Hall, College of Charleston

Two days after we got home Little Angel’s health quickly went to hell and on my 46th birthday he was hospitalized. However to keep this post peppy, my favorite birthday gift was an incredible drawing of a pineapple from the Big Angel; the H.J. matted and framed it for me and when we eventually finish the remodel of our bed and bath, I’m going to hang it!

charleston st john pineapplemy favorite new artwork!

charleston pineapple porcelain

sweet little pineapple porcelain box found at the City Market

Even though this is not in the style of my beloved navel-gazing I really wanted to write this entry because our time in Charleston, South Carolina, was utterly fantastic, and we four agree that we did Everything Right. We have been left with wishing to have spent more time in Charleston, yet knowing we didn’t leave anything unseen. Because it was so perfect I wanted to have it somehow memorialized.

charleston palmetto_flag_495

goodbye, Palmetto state

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Wonder of wonders, miracle of miracles

It’s all Fiddler ’round here because I am thinking a lot of Wonder of wonders, miracle of miracles:

Little Angel’s stair lift arrived!

Ruffin on his stair chair

It was installed the week before Halloween and it was either the best Trick or the best Treat — whichever, it’s fantastic, and it’s not even chocolate.

Last week his new and also continental Special Needs changing table (his is a chipper yellow) was delivered, all 280lbs of it. While I may be muy fuerte I’m not stupid so until the contractor is able to come and install it it’ll live in the garage. Sooner, later, it’ll be installed and it’ll be heaven.

For Halloween the Big Angel wanted to dress as David Luiz, evidently a professional soccer player:


David Luiz’ body double, aka the Big Angel

I’d no clue who he is, clearly, but Big Angel kept describing this kinda ‘fro like mane, so I found a brown afro wig. Another miracle: the day it arrived I was somehow able to capture the Little Angel and put the wig on him, and I did not want to take it off! Too adorable. (said with a French accent to keep my pretensions alive)

Thank you Little Angel for being my Style God.


Nothing says hot to trot like a ‘fro, chewy tube, and drool bib.

And fuchsia slippers in the background.

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