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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Little Angel 420

http://growpotplants.com/wp-content/uploads/2013/08/realm-of-caring-foundation.jpg

February 3, 2014 we started the Little Angel on Charlotte’s Web, a medicinal marijuana developed for children with epilepsy. It is a very specific strain without THC (the psychoreactive — that’s what makes you high) and with increased CBD (cannabidiol, the medicinal, “healing” properties of cannabis). We are lucky, and we know this. We live in Colorado, where marijuana is legal across-the-board, but specifically where medicinal marijuana is available to children. We are lucky because The Realm of Caring, which developed this particular strain, is headquartered in Colorado Springs, approximately an hour and forty-five minutes from our home.

We’re also insanely lucky because we have water safe to drink from the tap, indoor plumbing, running automobiles and the funds to put gas in them, and money to pay for Charlotte’s Web. We are INSANELY lucky.

I work part-time in a clothing boutique, and I love it. Mostly. I refer to it as my lipstick job because I wear lipstick to go to work! I work with a small group of women I greatly like, and by-and-large I like most of the customers. What I really like is interacting with women: I am a true girl’s girl.

Last November a customer came in and we each said “You look familiar”: we finally placed the other and realized we recognized one another from a local therapeutic clinic where we take our children (where she’d taken her daughter the previous year). We’d never really spoken, just the token “hi” sort of thing, but we let it rip that day in the store. She’d been to the TED talk given by Joel Stanley (of The Realm of Caring), and she said to me that if she had a child with epilepsy she’d be putting her kid on Charlotte’s Web (aka CW) tout de suite. Peripherally I’d heard about it — how could I not? I have my ear to the epileptic ground (not really — we are so out of it because Little Angel’s epilepsy is so atypical that I always feel left out). But I’d dismissed it because the children who were being helped tended to have Dravet Syndrome, or at the least has myoclonic epilepsy: that means they had physical seizures. Little Angel had never had a physical seizure (these are called subclinical, when there is no physical indicator of the aberrant electrical activity).

However, I went home after that shift and exploded to the Hirsute Japanese (aka my husband and father of my children) “we have GOT to look into this.” So out came the computer and on went the TED talk.

We put the children to bed and came back to the computer, doing hours of research and talking with one another. That evening we completed The Realm of Caring’s confidentiality paperwork and started investigating how to get the Little Angel a Red Card (get him enrolled in the Colorado Medical Marijuana Registry). The hardest part of that was finding a prescribing MD: most traditional MDs will not because during their state licensing they’d agreed to not dispense (I may not have this precisely correct but this is what my memory is now telling me). When I called a few of the myriad local MMJ doctors’ offices, I was shocked how ill-informed (if not outright uninformed) many of them were, one of them threatening to turn me in for investigating getting a seven year-old a Red Card. Idiot.

Again, we got lucky. There was and is a waiting list for the CW — The Realm of Caring produces it so strictly that it adheres to traditional (FDA) pharmaceutical standards (in terms of + / -), but somehow there was a providential window and the Little Angel got right in.

Literally within the first twenty-four hours of his starting CW we noticed some improvements: his gross motor planning appeared to markedly change. He was attempting to climb any- and everything. His cognition did NOT ameliorate, so he didn’t appear to understand that he could not get his left knee up on X or whatever, and it was sadly comic to watch him lift that bent left knee fifteen times in a row, attempting to get it up on our (high) bed, for example. He is such a funny fellow, occasionally intentionally. ???

Within a few days we noticed improved eye contact: it was volitional, had duration, and appeared communicative. He was seeking people out to stand next to them and really peer into their eyes, not in a glassy-eyed, vacant way, but really looking into their eyes. Fantastic!

Because The Realm of Caring is not a medical facility, they cannot (and do not) prescribe dosage. Based on what other parents (and there are fewer than two hundred of us) are doing, we decided to start at .5mg per lb of body weight, and to increase every fortnight by an additional .5mg per lb of body weight. Because the other children all have physical seizures, their parents can tell immediately if the CW is helping — they can see a reduction in seizure activity. Little Angel’s seizures are all internal during sleep, with no outward indicator(s), so for us it’s all anecdotal. Parents had kindly, generously shared that if they’d increased the CW too high, the seizure activity actually worsened, so they would then immediately dial back the dosage. Helpful stuff.

Toward the end of Week 6 Little Angel had his first generalized tonic clonic (GTC), and then three days later another. The first was on a Saturday and we were getting ready to drive down to the Springs, actually, to fetch his next batch of CW, visit the gorgeous Garden of the Gods, and then have afternoon tea at the equally gorgeous Glen Eyrie Castle. Big Angel, Little Angel, and I were in the family room, Little Angel goofing around on the armchair. All of a sudden his body got tight, his neck bent with his chin in his chest, his arms were bent at his elbows, his hands holding the other, and he started physically twitching. I ran right over to him to touch him and talk to him, keeping a firm, still pressure on both his back on his one of his forearms. It lasted maybe one minute at most, and when it was done he got the cutest sly smile and then looked up, seeming “fine.” The same behavior occurred for the next seizure.

Those were not quite three weeks ago. Today at school he apparently had another seizure which caused him to fall down, and then this evening during dinner, with me, he had yet another. Again, his postictal thumbprint after the dinnertime seizure, at least, was another large sly smile, and it made me wonder if somehow the seizure feels good. As we finished his dinner I remembered a book I read many years ago called Lying Awake by Mark Salzman. It’s the story of a nun who receives the voice of god, her spiritual writings become wondrous, etc., yet modern, occidental medicine says she has epilepsy and these divine interventions are really seizures. She can be “cured,” but why would she want to be when “curing” her would eliminate her direct pathway to god. (This is all based on memory so pardon me.)

Anyway, it made me think about that, about the different affects of seizures. Little Angel’s subclinical status have literally and truly destroyed his brain and cognition, but not everyone with epilepsy has that debilitating and devastating outcome.

As of this writing, we’ll keep the Little Angel on the (much) lower dose of CW until his next EEG (in a fortnight). That will tell all of us if the CW is helping the seizure activity and if so, how much. Fingers crossed.

I am so crazy in love with this little boy: I would do anything short of murder (although it depends on the person …) to help him. He is delicious and sweet and cuddly and funny; I love the special uninterrupted face-to-face time as I change his diaper. I always sing to him and play kissing games. He smiles and giggles, and then pushes me away when he’s had enough. I love it. I cherish that concentrated one-on-one with him. I just want to help him.

Fascinating stuff.

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