violet

Any iteration of purple has never been my thing, but now I am strongly feeling the lure of it, especially lilac. I’ve decided to paint our master bedroom fireplace the prettiest lilac — or is it violet? What is the difference? Of course, first the GC needs to actually come back and finish building it ….

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this is Benjamin Moore’s Grape Ice, 1395

The miracle drug for the Little Angel is not, alas, a miracle, and approximately one week after introduction significant and significantly problematic issues arose. We’ve had to titrate him up as the seizures have returned, and I am so angry about his toxic cocktail. He is eight years-old and should be pure as the snow, but that body is pumped full of poisons and you know who is poisoning him? Me! I’m the one administering the meds in the hopes they give his brain and body a rest from this horrible seizures.

One of the side effects is a massive increase in the hypotonia (think civil disobedience); he is floppy and strong at the same time, resisting my moving him and subsequently hurting me. Of course he’s not doing it on purpose — he doesn’t have that ability, but it still hurts. The radial nerve in my right forearm is damaged but I honestly don’t know how to perform many of his ADLs without using it and neither do the OTs. Ha ha! Not sure when his Special Needs changing table will be arriving from England, and of course then it has to be installed, but I’m ready. I am so ready. I will be having a party with fancy invitations and a chocolate tower because I will be able to wipe that chocolate right off the changing table! Probably with my tongue, but whatever.

Easi-Lift

For the Little Angel, this is the best table on the market as it’s height adjustable and has an integrated padded safety rail. We’ll continue to change him in our laundry room which, while good-sized for a laundry room, cannot support a freestanding table. And I don’t want to change him in the middle of the family room: there is something to be said about human dignity! Well, not that it would fit in the middle of our family room but you know what I mean.

I heard this past Wednesday that Little Angel’s stair lift is due to arrive October 13. Of this year — I know, I had to ask, too. Let me just say this is my first and last time not overseeing a home modification (evidently those in the know simply call it “home mod”). If I had GC’ed it it would have been installed in August without the headaches associated with these nitwits. I am pissed about them because their actions have been not only duplicitous but outright unethical, and after it is installed to my satisfaction you can bet I’ll be filing a grievance so other families don’t get screwed. Grr.

Okay bright side: I love embroidering so I’ve decided I’m going to join one of those Stitch ‘n’ Bitch groups to go and work on embroidering a slipcover for the stair lift chair. I’ll get Girl Time (yahoo!!!) plus fun time for me doing the actual embroidering. I have been collecting inspirations like bananas, but ultimately think I’ll do something with his initial and big animals, like horses. Duh.

Monday was a hard day for me, I think this has actually been a hard week. But Monday night I felt as if I’d been in a car accident, my body so tight and tense. I know it’s the stress I’m carrying from literally carrying the Little Angel. I snapped at the H.J. that he owes me everything for my hard work with the Little Angel and to his credit he completely agreed. so I purchased an outrageously expensive pair of booties with which I’ve been smitten. Fuck it. If I’m hurting my body carrying / lifting the Little Angel then I’m doing it in cute shoes.

Of course, there is more than an air of the ridiculous to me because I just finished caulking and applying the first coat of fuchsia paint to the newly installed crown moulding in our fuchsia powder room. A few years back I’d plastered the walls / ceiling (everything in this house had that knock down texture which I loathe) — they hadn’t been plastered when the plasterers were here a few years before that because I was then using that powder room as the diaper changing room and could not be without it for even three days. Could not do it. So I plastered it myself, painted it glossy fuchsia, silver leafed the ceiling, hung a drippy crystal chandelier (well, that I didn’t do myself because the box had to be moved from the wall to the ceiling and I didn’t / don’t know how to), painted the builder’s grade oak vanity high gloss black, had a marble countertop installed, and installed myself (!) mini marble white and black hexagonal tiles. But never did crown in there because it is a powder room of seven planes. Crazy angles and hard to reach areas, so I was able to be happy because it was all fuchsia anyway.

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pre-crown installation

But the H.J. wanted crown in there so I had it installed. He’s pretty much a slob and his finish work is acceptable if you have no standards — not low standards, NO standards. So even though I was kinda ticked about having to figure out how to get to all those crazy heights and angles I did it and damn it looks good! Modesty, thy name is not moi.

So I am ridiculous talking about my trop cher booties whilst sitting in my painting clothes, which are also my plastering and caulking clothes. They are covered with years of projects (of course I wash them but a lot of that stuff does not wash out!) and I don’t really even look sufficient to pop out to fetch the mail, but there you have it.

Sometimes I am really tired, physically and mentally. We Special Mamas work exceptionally hard doing things we’d never envisioned — changing diapers for ten years. Feeding a baby bird for ten years. The truth is, of course, the love I get to give and receive is greater than all that. But I think I am going to supremely enjoy admiring the view of my lilac fireplace over my new booties.

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silhouettes + hearts

both silhouettes slightly distant

Last year I had silhouette pendants made of my children for their grandmothers, their guardian (named in our Will, so for now she’s just a close friend), and of course for myself. I love them so much and get such joy out of seeing those necklaces hanging, not even wearing them, that I wanted to replicate it.

First I scoured online (for I avoid shopping of any variety — in-person / online, as much as possible, but at least with online I can do it in my nightgown late at night with a cup of tea) and found a few crusty frames. The Big Angel’s oval frame had held a ceramic silhouette of Beethoven and Little Angel’s round frame a silhouette of Martha Washington. Then on Etsy I found a plethora of silhouette artists: I knew I only needed an electronic version, not a paper one, so I could print them myself in the size I wanted. I worked with Qing at TwinkleMingle and she was fantastic and so accommodating. Plus the silhouettes are lovely.

I knew I wanted to hang these small silhouettes (the frames are approximately 4″ – 5″ high) from the knobs on the shutters in our bedroom, and I wanted purple ribbon. There is no purple in our bedroom but I could tell it would be right. I ordered purple (but it came out more like a purply magenta) silk ribbon from FlowerSeedPaper and it is lovely … but probably not right for this project. One day I may instead hunt for a substantial velvet ribbon or even a grosgrain: the silk is too delicate and frays just from looking at it. Thus far I’m able to accept it, however.

For a while I had been collecting silver puffy heart charms for no other reason than I like them, the more character the better. Looking at the silhouettes hanging they felt incomplete while my heart surged looking at my beautiful boys. On Pinterest I saw a pin of heart-shaped bells; seeing that beautiful pin I thought “eureka!” and ferreted out my hearts.

I did end up purchasing four more hearts: a cat heart-shaped charm for the Big Angel (who is a serious cat man) and a horse head heart-shaped charm for my Little Angel, and also two Victorian-inspired sentimental charms (one has I love you and the other Sweet on it).

close up of St Johns hearts

close up of Ruffins heartsWhile I will need to build a better mousetrap for maintaining the ristra effect of Big Angel’s hearts for now I am delighted with them as I am up close and personal every evening and morning as I open and shut windows and shutters.

both silhouettes framed with multiple hearts

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sweetest thoughts

Tomorrow is the first day of school for my children. The Big Angel will be in the fifth grade, and here that means his final year of elementary school; Little Angel will be in the third grade, and providence has smiled upon us for his beloved first grade teacher is now teaching third grade and asked to have him again in her class. She is a wonderful woman of whom I am terrifically fond, both personally and professionally. She dressed a bit like a Druid which, I confess, made me like her even more! Little Angel spends the bulk of his school day outside her classroom, in the dedicated Special Ed classroom, because it is a safer, more benign, more appropriate space for him. And from the moment he leaves our house on his cute white wheelchair bus to the moment that bus brings him home he has a one-on-one with him at all times; on the bus his aide is a warm fuzzy of a woman named Jessica.

Best Beauty Buys 2009, OPI Big Apple Red

Last night I finally painted my toenails (I was about a week overdue and it was disproportionately bumming me out) my beloved RED color (I’d had an aberrant moment last month when I painted them fuschia which while it is my all-time favorite color it is sadly not my favorite nail polish color, go figure). I am meticulous in this endeavour but luckily I have a rich inner life so I day dream. I didn’t call these images up: they came to me unbidden.

I remembered the day Big Angel started walking, wearing an adorable smocked seersucker bubble, in his French music class.

170in_music_class

that’s him, second from the left, underneath the teacher’s right shoulder

I remembered the day Little Angel started walking; he was two years, nine days old. He’d awoken from his nap toward the end of Big Angel’s fourth birthday party.

It had taken a team of therapists over a year to get him to be able to walk, and I am telling you as surely as I have bright red toenails, it was MAGIC! Once he started that was it — go go go.

I thought of how Little Angel always wakes up in a good mood. Pre-catastrophic regression when we’d go into his room every morning or after his nap he’d be sitting or standing in his crib, sporting a grand smile, and say in the jolliest voice “Good morning!” He still wakes up in such a sweet, smiley mood. We are so lucky.

I remembered how Big Angel used to daily feed our bevy of quail.

I thought of how just that day I was feeding Little Angel some cilantro lime rice topped with sauteed onion and corn (we call this “taco”) and I was snacking on chocolate-covered goji berries: he reached out and stole a handful of my berries and somehow got them in his mouth. Copious chocolate drool then dribbled out the sides of his mouth, and he giggled and smiled, so I laughed too. I told him he was a choco-taco thief, and he laughed and laughed. That turkey was telling me jokes, and I was and am so grateful for these pieces of him, of his essence. He’s in there. He is in there.

It took months of research and following through but I found a new neurologist / epileptologist for Little Angel, and he (the doc) was astonished why Little Angel’s previous epi (who is the head of pediatric neuro at the med school and associated hospital) was so asleep at the wheel (my expression). Yeah, uh, that’s why I was shopping around! The new neuro was very disturbed that the previous neuro had not wanted to see Little Angel after the advent of his new seizures (me too) and as disturbed that no new med had been suggested to help control / ameliorate these seizures. Ditto. He recommended a new med which Little Angel started two days later and within two days of that his daytime seizures were GONE. He still exhibits suspicious behavior (like an aura), but thus far (and knock wood), no seizures. Of course we’ve no idea if the new med is helping his nighttime subclinical status (it will take an EEG for that), but we are so excited and so grateful for what we are seeing in Mr. Handsome. Thus far he’s also not demonstrated any of the ill side effects of this new rx, so double yea!

I’ll always find a reason to be put out, to be pissed about something — that’s definitely in my mtDNA — but thinking of my delicious sons past and present, and now Little Angel’s improvement fills me with such bliss.

Look how lucky I am!

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lingua franca

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Yesterday I sat in the pavilion watching Little Angel have his SLP hippotherapy. He rides the sweetest little Norwegian Fjord. Another woman, a volunteer, was also in the pavilion, finishing her lunch. She asked me for how long the Little Angel had been riding and we embarked upon a conversation.

This gorgeous woman has a daughter who will shortly be twenty-six; her daughter has significant Developmental Disabilities, and she started doing Therapeutic Riding (TR) when she was eight.

The Little Angel turned eight this summer, and this woman’s daughter is an adult, but we connected. Not only do we share a lingua franca, we share the specific Developmental Disabilities (DD) dialect. She shared with me once watching her daughter, years ago when a girl, carefully placing pebbles in a bucket. This is a child with an inability to attend, who flits and fleets between activities because her sweet brain just doesn’t understand the activity(-ies), so for this girl to sit for minutes and fill her bucket, that was H-U-G-E. It meant that she created a task and she completed the task, no hand-over-hand from anyone. I got teary hearing this, and even without knowing her daughter I knew how profoundly exciting this was. Didn’t mean her daughter was “cured,” didn’t even mean she could replicate it. But she did it once, and that’s beyond pure joy. I felt elated.

I don’t know if this mom and I shall cross paths again, but I am so grateful for our twenty minutes and for our connection. I saw this woman and she saw me.

We are SuperWomen!

xo

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Catching Teeth

In years past, the H.J. has been neither keen nor a participant, nor a keen participant in Mother’s Day. Early on I guess it hurt my feelings — so much has happened in the intervening ten years the fact that I have to guess my reaction tells me how trivial it really was; rich white people problems. Ha! However I work hard for my children, so I definitely take care of myself. Ahem.

This year I purchased a colorful pom pom necklace:

Image 1 of BEADED NECKLACE from Zara

it’s a bit heavy but worth it!

And a pair of insane Mediterranean blue wedge / platform sandals:

which will be nothing but highly impractical as I am chasing / carrying the Little Angel. I don’t care. I love them and just wearing them whilst vacuuming (because that’s my life thus far!) has made me so happy.

My favorite meal is breakfast for dinner; well, it’s one of my favorite meals as I am an equal opportunity eater. Brunch, afternoon tea, breakfast for dinner — each delights me. So I suggested we go out to a restau which offers breakfast all day and which has a healthy bar (thinking of the ale / stout loving H.J.), plus they have lots and lots of vegetarian dishes. The H.J., who is our primary dinner maker (he loves to cook), was thrilled with that suggestion as he was feeling uninspired. Because Little Angel likes to go to bed ~5:45pm, it was a blue-haired dinner. Early breakfast for dinner — could my day get any better?

Yes, because after we’d ordered the H.J. threw (literally) an envelope at my head: inside was a very, very generous gift certificate to a local chi-chi spa. Evidently the H.J. had me confused with the other mother of his children (that would be only me) as I am emphatically not a spa goer. At all. The only times in my life I’ve had a pedicure is when I was so plein with child I could not reach my feet, and I resented it even then. I am so meticulous no one can compare with how well I paint my toenails (or my fingernails, which I do less often), but a vain girl’s got to do what a pregnant vain girl’s got to do! The H.J., seeing my bemused expression, offered I could get a facial — I hate having my face touched. Or a massage. Not my thing, I’m just not a spa person, however I was both moved and super surprised by the gesture and know I’ll find just the thing on which to use my present.

The following morning, though, I received the best present I could have ever received, bar the birth of my children: I caught one of Little Angel’s teeth. All of the teeth he’s thus far lost have been lost to us. He’ll go to bed with the tooth but wake up without, and you can bet I have scoured his bed and the surrounding floor. What’s most likely happened every single time is that he’s swallowed it. Now, I am not above combing his dirty diaper, pas du tout, but I am not the only one who changes his diaper (he’s at school), so I’m sure that’s how his teeth have escaped my capture.

(And yes, it has recently come to my attention that it is impolitic of me to refer to it as a diaper as he is nearly eight years-old: the appellation préférée is “briefs.” Clearly this is ridiculous as it is NOT a brief but a diaper!)

Two months ago one of his upper front teeth was loose and I just knew I was going to claim it … except during breakfast all of a sudden he was crunching something in his mouth and I screamed “it’s his tooth!” I stuck my hand in his mouth to try and retrieve it but not only did he bite, hard, my fingers the tooth had been shattered to bits. I was so emotional I turned to the H.J. asking for a hug.

Well, the day following Mother’s Day I fed Little Angel his breakfast; after, as I was wiping his face and kissing him all over, I saw something odd in his mouth, so I, again, stuck my hand in there. It was his other upper front tooth, dangling by a thread. A thread! So I grabbed it and it bled and he giggled giggled giggled, and I cried and giggled too.

All of the Big Angel’s teeth were saved for (and by) the Tooth Fairy, and that’s fine and I love having them secreted away, but having this one miracle tooth from the miraculous and rapidly deteriorating Little Angel has made me so bone-deep happy. I just … I’m just over the moon.

So the search began for a locket into which I could place his tooth. Finally I happened upon the name “mourning locket,” and that led me to New Zealand (well, online EnZed) where I found exactly what I wanted:

And I’m having it and another, larger locket (for Big Angel’s teeth) made in gold.

While I LOVE my pom pom necklace and I ADORE my ridiculous platform wedge sandals and I am THRILLED about exploring the spa life, it is my boys’ teeth which are truly my Mother’s Day best beloveds.

                                             toothless smile

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horse + dog

Driving from the alterations shop to pick up the Little Angel for craniosacral therapy I passed a horse being ridden by a man. The gait of the horse looked awkward and, being the looky-loo I am, I slowed down to watch what was going on. A dog was running after the horse and rider, and when the horse stopped, the man was able to bend down and retrieve his hat from the dog’s mouth. The dog must have rescued the man’s blown-off hat (it was very blustery today), and it just touched me so much to watch this three-way connection of dog, horse, and man.

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The Romance Reader

Monday it snowed and it was beautiful. Tuesday, by 8:30am, it was already 45+ degrees (Fahrenheit), so the H.J. (my Hirsute Japanese) and I planted.

I love gardening; I love the act of digging in the dirt and dead-heading. I am mad for seeing the results of my work — driving up to our home and seeing the abundant flora makes me feel good. It’s a physical reaction.

Our front yard has a slight slope, so the higher section is less full than the rest, and I am a firm believer in More is More, and More is Definitely Better. Remember when Diana Vreeland described her desire for her living room, that she wanted it to “look like a garden, a garden in hell!” Well, I’m not really after that whole beelzebub imprimatur: I want our garden to look like Tasha Tudor’s. There, I said it.

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Diana Vreeland in her garden

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Tasha Tudor in her garden

My friend Leslie turned me on to Pinterest last year, and as I am one for eschewing social media (and being a downright bitch about it: judgmental, hypocritical bitch, that is) I put it off. But now I’m kind of a sucker for it and visit it nearly daily. Damn. We have started a minor remodeling but major decorating of our (master) bedroom — it and our bath are the only rooms in the house not yet touched, and we’ve now lived here seven and a half years. I’d stopped seeing it, really, but something happened last year which opened my eyes and I thought “what the hell? I’m tired of living in a college dorm.” I’m 45, dammit! So searching for images which convey my goal, or which help me to winnow, has been both a ton of fun and a huge time suck.

A vulgar phrase but oh so apt. Last week I followed a pin to a board to another pin to another board and before I knew it I was on the board of a lovesick man. At first as I looked at his pins I thought it was charming and romantic, and I wanted to hit the H.J. but of course he rolled over and farted, so whatever.

Look at ME.  I♡UI'll make it worth the stay♡I do ;)And then I smile

However as I scrolled down this particular board I came to understand the pinner is most likely unbalanced and may be a borderline stalker.

Because I am clearly unbalanced while I felt great concern for his well-being I also still felt, hmm, envy, wistfulness, melancholic, about the love, desire he was repeatedly professing for this woman through his pins. I did jostle the H.J. and made him look at some with me, with me telling him “yeah, I want this too.” I want him to pine for me or think lustfully of me … of course that’s difficult to do when you’ve lived together a long time and cut your toenails in front of the other.

When I was pregnant with the Big Angel (who’ll be ten this summer — I am overjoyed at him turning double digits!) so many “well-meaning” (cough cough) women stopped me to tell me the horrors of childbirth: this is f-a-r from a unique experience. In general I understood they simply saw my big belly as an empathic sounding board (they were mistaken), so fine: I’d smile and tell them they sounded like wonderful mothers. However the stories of peri tearing / episiotomies did scare me. I brought this up to the MD who showed the H.J. how to stretch my perineum so when the time came, I’d already be loose resulting in no tearing and requiring no cutting.

Fuck that hurt. Every night the H.J. would put on his head lamp, purple glove, and lube up to stretch my perineum. In the medical office we evidently provided the levity because each visit the staff would direct to my belly “just go toward the light — that’ll be your daddy!”

But a man who nightly stretches his enormously pregnant wife’s perineum is probably not going to also be sending her, rather, ME:

.

... Every damn day

Hidden poetry

?

And it's killing me that you don't care

I told Leslie about this board and my concern concomitant to my titillation. We’ve been with our respective spouses the same amount of time, so we both understand that even though the romance is definitely gone (and how), that level of comfort, of safety, of trust can only be had with a truly long-term / been through it all together partner.

I’ve no doubt this is in large part why I am a romance reader, because in them I get to scratch my itch of all those gestures, of those exciting, twitterpating emotions which only occur in the beginning of a relationship. Plus there’s no arguing about cleaning out the cat litter (although we never argue about that).

One of my current favorite authors, Penny Reid, recently queried on her website what is the definition of success, and the more I thought about it the more I found that to me, success is contentment. This is who I am and I am crazy about myself. Finally! I “joke” to others that if I need to feel bad about myself I’ll call my mother; luckily she lives in Paris so it’s a long-distance call. It’s pithy but it’s true, and even at this age she can needle me. I am a “disappointment” because I am overweight, and the Little Angel is “vulgar” because he is disabled. (and for the motherfucking record: the Little Angel is PERFECT — there could never be anything vulgar about that miraculous child and how insanely hard he has to work every single day: I am in awe of him)

For me as a sensitive person (as we would now say, “the sensitive child”), growing up never ever being enough, let alone good enough, took a long time to shake off. I’m ecstatic while feeling sad that I can now love myself just as I am: ecstatic that Hot Damn! it occurred in my lifetime, yet sad that it had to happen at all. I adore the absolute hubris I see in the Big Angel (Little Angel is too disabled to understand himself, let alone beyond himself) — yes, that’s how it should be! A child should think they are the absolute most fantastic, strongest, smartest creature. Yes!

So perhaps my romancing has to come from within. I do give myself the gift of shutting the door and painting my toenails every month — it makes me feel good, it makes me feel like me. I do work on my gardens, and the H.J. is my chief flunky. He truly toils, a labor of love, so we can have beauty. I like that about him, but I’d like it more if he also whispered a sweet nothing. Greedy, thy name is moi.

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