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

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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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I’m a nurse!

Late last year the state alerted us that Little Angel requires, according to it and its diagnostic tools, licensed skill care ’round the clock. The state likes it if the primary caregiver can go to school to become licensed and if so, it will pay for the schooling. So I did it: I took a super-intensive course and February 21, 2014 I took and PASSED the state exam. Look at me! I’m a nurse!

Back in the ’90s I did a PhD but never, ever refer to myself as “Doctor” and greatly eschew it from others. However, you can bet your bottom dollar I am now calling myself “Doctor Nurse” and telling people that while I am licensed to cure if you fuck with me or my kids I will cut you instead.

Today Big Angel’s grade hosted a Hoedown — they have been studying the Frontier and development of the Wild West, which is very near and dear to my heart. This glory of expansion is unique to the USA — yes, yes, I am well aware many other cultures and nations have also experienced growth and development, but the whole cowboy / Western culture is truly American. I read somewhere that the British have Shakespeare, the French Molière, the Russians Tchekov, and America has the Western. Driving in the middle of our country excites me — the vastness of it, the petrified wagon ruts, the various Trails (Oregon, Mormon, etc.).

petrified wagon ruts near Guernsey, Wyoming, USA

Near Kearney (strangely pronounced “carnie”), Nebraska, is a museum I just love, the Great Platte River Road Archway Museum.

It crosses Interstate 80 (an east-west multi-state highway), and has one of my all-time favorite quotes tucked inside on a pillar:

The cowards never started.

The weak died on the way.

Only the strong arrived. They were the pioneers.

Driving miles and miles along the Trails, visiting the Forts, the Pony Express stations, the historical museums, and really thinking about it gives me great pause and admiration.

Big Angel was so excited for me to attend the Hoedown where we’d get to dance the Virginia Reel together. I loathe going to his school when parents are involved because I just detest the local mama cabal. It is oft-times hard to believe these are (allegedly) adult women, their mean girl, catty, clique-y behavior is so repulsively jejune, and I cannot brook it. In some ways my skin is just too thin, but of course in others I am like a rhino I can deflect just about anything. Guess that makes me human. And honest. But I sucked it up and put on my Frontier gear (although I dressed more like a Ralph Lauren version of a Native American because I did not feel like shaving my legs for a flounced skirt — nuh-uh) and walked up to the school. Nearing the entrance I heard a mother in the distance yelling, and a mother in front of me greeted me by name (though for the life of my I’ve no idea who she is), saying “you’re being summoned.” I turned to look and did not recognize the woman: she called out her name and I was flummoxed — her hair had gotten so long!

Well, it turns out it’s a wig and Mary Frances has been quite ill. Quite ill, indeed. I love this woman. I just adore her to bits and pieces, and poof!, just like that something I’d been dreading turned into an absolute serendipity and filled me with happiness. Of course I’d been delighted to go and listen to Big Angel and his classmates regale us with songs and then dancing, but there was just something so warm-fuzzy-ish about reconnecting and sitting with this abso-freaking-fabulous mama. We are le meme age (45), but together we are like that special time in a teenage girl’s life where she and her dearest girlfriends are non-stop chatty and touchy-feeling, constantly patting the other or randomly hugging, where everything is “super!” and giggly with exclamation points. I remember having such close girlfriends but it’s been a long time. Life, age, obligations, anti-depressants. Ha!

Mary Frances herself has been in nursing school but, understandably, had to take a break. She and her son’s father are divorced and she doesn’t live in our town, so she doesn’t engage much with the school. It had, embarrassingly, been months since Mary Frances and I had visited, and I erroneously assumed she was just crazy-busy with the end of nursing school concomitant to being a single mother who also works. Wrong, but she told me it was okay that I hadn’t known about her illness because she just wasn’t up to socializing, and I can believe that. She’s been exhausted and working fiendishly on getting better. I hope she does. I like her so much.

And I got to dosey-doe with my favorite Big Angel. It was a lovely afternoon after all, and I was, yet again, an idiot for being uptight beforehand. One of these days I might learn. Might.

In the meanwhile, it was Macaron Wednesday chez nous, and it turns out I’m not really a macaron gal. Big Angel is seriously a macaron fella! Good for him.

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Expressions of the Year

Earlier this year we all discussed at the dinner table what our mottos for 2014 would be. The H.J. has decided to retain his motto of 2013, “Suck it up!” My new motto is “Please do not make more work for me,” and I have already used that gem TO DEATH. Little Angel’s Special Ed Case Manager’s motto is “You’re welcome,” said in response to anything. She told me she’d come up with it when a parent yelled at her “Because of you we can’t have anything nice!” to which she replied “You’re welcome.” (The parent was clearly using her as an easy target, not because there is any verisimilitude in that statement.) I’ve also found myself readily adopting this one ….

I espied a friend sitting on the floor, sorting someone else’s catastrophic mess, and asked her “How’re you doing?” to which she sing-songed “Living the dream!” and we both guffawed and lady-snorted (yes, oxymoron). Relating this to another friend-ish (never be friends but we’re friendly) who volunteered she’s been using “Just worry about yourself” a fair bit this year.

Big Angel still hasn’t come up with his, or he did and it was something he’d heard on Vsauce or some other YouTube channel (bane of my existence) but he’s not using it, just thought it was racy enough to garner a response from us. He’s close to my last good nerve these days and in fact, when he gets home from school today, will be the recipient of a very forceful “DO NOT MAKE MORE WORK FOR ME!” from his mother (me). I have had it with a 9 1/2 year-old who will not do his chores unless specifically told and monitored whilst doing. Had it.

In January I started the process of getting a stair lift installed in our home for Little Angel: in January alone we had three falls, one with his father and two with me. The one with the H.J. necessitated a knee brace for the H.J., and one with me resulted in severe bruising on my back. All three falls were due to Little Angel’s inability to help / understand, and him flailing his body and throwing us, hard, off-balance. None of the falls resulted in any injuries to the Little Angel, which is good, but he’s getting bigger (which is a good thing) and carrying him up and down the stairs will not be getting any easier.

His Medicaid Case Manager (he has Medicaid as he is profoundly disabled and under 18 years of age), whose sole job description is to help the children get necessary and appropriate services. As the Little Angel is severely developmentally / cognitively disabled and has global aphasia, that means dealing with me. I spend an inordinate time managing his care and health, and this woman spends an inordinate amount of time throwing obstacles in my ways — probably in other parents’ ways as well, but I only know for certain how she is actively making more work for me. I am t-h-i-s close to no longer being able to work with her, which will be fine as I’ll just go up the ladder, complain (again) and request a different Case Manager (as I’ve done in the past). This gal is young, single, without children, so she has aucune idee how hard, how insanely time-consuming, how desperately personal this is for us involved parents. Grr.

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Hopefully this will soon earn the title of Before Stair.

I’m going to give just two (of many) examples: I secured three bids from three vendors for the proposed stair lift. We have a curved stair and curved stairs necessitate a custom stair lift; a custom stair lift means it’s more expensive. That’s the way it goes. That automatically narrowed the pool (of stair lift manufacturers) at which I could look, leaving five (Precision Stair Lifts, Stannah, Bruno, TKAccess, and Sterling); turns out one of them is not available in our state, which brought the pool to four. Because of Little Angel’s inability to tolerate low frequency sounds (like power tools, vacuums, electric toothbrushes, hairdryers, blenders, water running in tiled shower, etc.), I had to gauge the sounds of the stair lifts’ motors, and that ruled out one of them, leaving us with three. Luckily these three were able to meet the rest of what I had deemed the Little Angel Standard: three- or five-point harness, leg-restraint, two remote controls, chair’s armrest controls disabled, in addition to not having a low-frequency motor (all three are near-silent), and being able to make a curved stair lift.

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photo courtesy of Stannah showing five-point restraint / harness and leg restraint

These are not inexpensive: the least expensive bid we received was over US$16,000, and the highest was just under US$22,000. I’d collected LMNs (letters of medical necessity) from Little Angel’s sundry providers (physical and occupational therapists, general pediatrician. Special Ed Case Manager, plus a detailed letter from me [the Mother LMN and the mother of all LMNs], including multiple photos of the stair in question) in addition to the bids and presented them to the Medicaid Case Manager for her to present to the board. Her first response was to ask me why I hadn’t investigated any other options, so I asked her if she’d read the Mother LMN which starts with the fact that our floorplan lends itself to neither moving the Little Angel to the ground floor nor an elevator. She then wondered why we hadn’t thought of hiring someone to carry him up and down the stairs. I think she’s an idiot, and to prove this I asked her “are you suggesting we have someone here 24/7 at Little Angel’s beck and call, one for whom we would be limitlessly indemnified against injury and who can 100% guarantee they will never, ever hurt / harm the Little Angel?”

She couldn’t answer it. Idiot.

She elaborated that she’d had “a client who just last week had a curved stair lift installed for US$13,000.” I immediately peppered her with questions: “Is the stair exactly the same shape as ours? Who is the manufacturer? Who is the vendor? Does it have torso / leg restraints? Does it have two remote controls? Is the armrest’s control disabled? Is it near-silent?” She chose to answer none of my queries and went on blabbing about something else. I was like a dog with a bone and wouldn’t relent, resorting to yelling these questions at her over and over. Finally, with an exasperated huff, she said “It was a hypothetical.”

Are you fucking kidding me? Which was it: she has a client who’d just had a custom curved stair lift installed last week (which does not sound like a hypothetical to me) or she’d pulled that number out of the air?

Then I was in a huff and before ending our conversation I firmly and loudly said to her “Do NOT make more work for me!”

La vita e bella. I love chocolate. More mottos.

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Year of the Horse

Yesterday I got to go to Costco for the first time in 2014, and I was ecstatic: six heads of romaine (we all love salad), gallon-sized container of mango smoothie (used as delivery for one of Little Angel’s meds), huge container of yellow cherry tomatoes, you were mine! It was a cold, snowy day (although today is subzero so yesterday, in the low teens [Fahrenheit], was balmy by comparison), and Costco was deserted. My favorite checkout person, Lorri, was there, and when she saw me she yelled “GIRL! Where have you been?” as she crossed over to hug me. Love her. And I told her.

Late-November we received notice from the state that, according to their Pediatric Acuity Tool (PAT), the Little Angel requires licensed, skilled care ’round the clock. They prefer if a parent / primary caregiver provides it, and if the parent is able and wants to, the state will pay for the schooling. If the parent can or will not, then the state will instead send nurses in every day to tend to Little Angel. (not while he’s at school / therapies / camps) So I said “sure, I’ll do it.”

Then in late-December I received notice that my schooling would have to be completed by February 1st. What?!? So I purchased my scrubs and attended an accelerated course. I was supremely lucky because I had a dynamic instructor and my (small) class was a very diverse group of interesting women. I grew up in a medical family, concomitant to being Little Angel’s mother, means that I have a wealth of medical knowledge, so that undoubtedly helped, but it was still s-t-r-e-s-s-f-u-l. But now it’s done! I just have my state licensure exam later this month. I mentioned this to someone and they asked “you’re a nurse?” and I didn’t even blink when I replied “nope, a surgeon.” I’m going whole-hog. Why not? I’m 45 and didn’t even get fuchsia scrubs (blue is the color of student nurses) out of the deal so dammit, here I go! I had my final day of Clinicals (practicum) on Saturday, February 1st; the H.J. and the Big Angel had gone skiing (H.J.) / snowboarding (Big Angel), so I asked our fantastic sitter (who was graduated from undergrad in December — so proud of her) to be here with Little Angel. My shift had been 5:30am – 2pm, so I came home and immediately disrobed (didn’t want anything on my scrubs anywhere near Little Angel) and spent a fortune paying the sitter, though she is worth it and I am so insanely grateful to have someone as mature, responsible, loving as she. When the big boys came home from their day in the snow they kindly and **wisely** (ahem) had a beautiful bouquet of flowers for me, to celebrate the end of my nursing education. I love lime green chrysanthemums, the imperial flower of Japan.

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Even with the additional stress of still parenting with going to school full-time, 2014 is off to a stellar start, probably because it is the Year of the Horse. While I am not all about horses, Little Angel certainly is and Big Angel fancies himself a horseman.

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a picture of the Big Angel atop his horse, Jed, in 2011

Last November I chose to give myself a break and not send out holiday cards — it was fantastic! But then when I found out that 2014 would be the year of the horse I thought “well now I have to.” So I did, and we sent out Lunar New Year cards.

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While trying to decide what to do for our cards I found this image online and felt it was meant to be in Little Angel’s room as I’d painted it in multi-colored polka dots (inspired by Damien Hirst’s Pharmacy series), so it is now off at the framer.

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The red + yellow striped hanging “thing” on the right is the hammock swing. It hangs from the ceiling and when Little Angel consented to doing sound therapy (now he doesn’t like the headphones, or anything, on his head) we’d place him in the swing with his earphones on, and gently push him for at least a half-hour daily. I laid on his bean bag (not in photo) and read. Little Angel cannot tolerate a closed-top hammock swing, so this one works great for his Needs, but many children with Special Needs prefer a more enveloping swing.

And our card’s face is instead a picture of the Little Angel atop his trotting former horse, with Little Angel’s chewy tube flying. (The H.J. makes Little Angel’s chewy tubes — I’ll post about this another time.)

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Happy New Year! I can tell already it’s going to be a wonderful year. I can feel it.

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chocolate biscuits a deux

Big Angel and the HJ came home from a run to Costco (a warehouse store); Big Angel walked over to me, presenting an enormous (and I mean huge) tin of Belgian chocolate biscuits. Of course I smiled and asked “but what will the rest of you eat?” And the HJ pulled out a second tin! He knows me and my jokes too well ….

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Paying for “professionals”‘ messes, again

As the Little Angel’s mother, I really need the professionals in our lives to do their jobs, do them fully, and do them correctly. Repeatedly I feel let down by them, and I just don’t know what to do. I so rarely have these feelings in regards to the Big Angel, perhaps because his isn’t an undiscovered world where I am having a hard time figuring out the language.

Little Angel is on a Medicaid Waiver: that means that due to his disabilities he is entitled to our state’s Medicaid (health insurance) plan. Because of his high level of Needs, that also means that he needs to have a Skilled Care Provider, and the state prefers that to be a parent. Me, in this case. Earlier this year when this was established it was like pulling teeth with his Medicaid Case Manager, a lovely human being but equally ignorant, to figure out how to go about it.

We did it, in large part (in the large part) because of insurance / disabled advocacy agencies to whom I reached out for help.

Well, now it is time for Little Angel to transition to the Waiver geared for children with severe needs, and as he does that my job description and fund source will also change. I knew that, so July 26 I started asking all the “professionals” how to ensure a smooth, easy transition without loss of revenue. In November when I learned the actual date of Little Angel’s transfer I again asked the multiple “professionals” about it. His new Medicaid Case Manager knew less than I, so asked that her supervisor attend the meeting for us to discuss.

Well, this morning it’s all come to a head and I am both furious and so disappointed — I can feel it tight in my belly — with all these “professionals.” For whatever reason not only did the left not know what the right was doing but the left wasn’t even aware it was supposed to do something, anything. I can (and am) document(ing) every single time I asked for guidance.

But who will pay the ultimate price for their fuck-ups? Little Angel and me. Of course! Why not? We, who are blameless, who did nothing wrong in this scenario, will be the ones to suffer the consequence(s), and they will be costly.

Some nitwit self-involved vapid mother at Big Angel’s school was really needling me about becoming a crossing guard. The answer was an immediate and unequivocal “NO.” She kept going and I refused to further answer: I answered once and no means no. But when she wouldn’t relent I finally fixed her with “when you take over ALL tasks for Little Angel — not Big Angel, just Little Angel, then and only then will I consider being a crossing guard.”

She got uppity with me so I said “I’m not the one with the problem here, lady.”

Being a parent is a wonderful and wonderfully time-consuming ordeal. I’m so blessed to get to do this and I wouldn’t trade it for the world. Any of it. However all the shit which accompanies having a profoundly disabled medically fragile medically not understood child completely obliterates any stress from the “regular” parenting. Spending hours this morning on this one issue which should have been taken care of when I first asked July 26. Spending months getting Little Angel’s medically necessary wheelchair. Spending months (still ongoing) getting Little Angel’s medically necessary hospital bed. We are (ha! I am) also in the throes of investigating and beginning a study of a new and potentially exciting med for Little Angel: I’d planned on using this morning to determine titration / dosage schedule for him. Actually, over the weekend the HJ and I’d decided that we’d set aside an hour to work on it together this a.m. after we got children off to their respective schools. Forgoing breakfast, I got everything set up in the den only to have the HJ pop up after a few minutes to say he would leave it up to me and to “fill [him] in.” He was bored. Yeah, me too, but so the fuck what? This is our child, after all.

It is my understanding from the parents of severely disabled children, esp those of us whose children are truly uncommon (and not those who say their child’s condition is “rare” — if it can be diagnosed, if it’s got an insurance code, if it’s got an international fundraiser, a website, a 501(c)3 then sorry, not that rare!)  and not able to be helped / understood by current medicine / science, that we feel as if we are constantly having to invent a wheel. We don’t have an inkling in what shape that wheel ought be — we are that clueless, that on our own, that in the dark. Because there is so much we have to do we really depend upon those whose jobs are to help us to do precisely that: help. So when they not only don’t help but make it harder, it is that much more frustrating, that much more of a letdown.

Fuck it.

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