lingua franca

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!


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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.

Diana Vreeland in her garden

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

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.


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.


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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