Wednesday, October 29, 2014
The scene at Target this afternoon. All the red-shirted stock people were cheerfully stocking the shelves with Christmas paraphernalia.
I thought I'd prempt the hysterical conservative Christian media and let ya'll know that the death of Christmas is imminent. Now you don't have to wait for Bill O'Reilly to tell you.
Next up on my plate is scouting out public schools to make sure they're slipping in some prayers and saluting the flag.
After that, I might build an enormous effigy of a teacup made out of the hundreds of flyers I've gotten in the mail this week, advertising for some candidate or another, and burn it.
Reader, what are you up to?
After more than seven months of considerable wrangling, Sophie's Medically Necessary Wheelchair Chariot has arrived, and it is a piece of art! We are very excited to have this piece of equipment in the house and loathe, actually, to send it off to her school. On other fronts, we still don't have a wheelchair bus, so we would have to transport it back and forth which will be problematic given its size and sophistication. The alternative is to keep this one at home and bring in her more and very used stroller for school use. She has an adaptive chair at school as well, and given the few hours she spends there, I'm leaning more toward using the wheelchair at home. It even has a tray where we can put toys and her iPad and food. I'm very grateful that this came through -- kudos to Anna and all the hard-working folks at NuMotion who had to make so many phone calls, fill out so many forms and just generally advocate for us over nearly half a year.
On yet another front, there's not much movement, yet, going on in Sophie's intestines. She's resisted the Magnesium Citrate and only mildly responded to the Miralax. I did a little research last night on the Interwebs and had a eureka moment when I read about people using cannabis successfully for things like Crohn's disease and irritable bowel syndrome, when diarrhea is a problem. Then one of my blog friends privately emailed me with the question about cannabis and digestion, and I hypothesized that perhaps over time, the Charlotte's Web has slowed Sophie's already slow digestion. I spoke to the pediatrician about this, and she agreed and suggested that she hasn't been drinking nearly enough, either, to keep things moving, that after a period of time without drinking nearly enough, you almost lose the mechanism that tells you you're thirsty, and then you don't have the impulse to drink and POW -- the cycle begins. It all makes sense to me, now -- she just hasn't been drinking nearly as much, particularly during the last few months when it's been the hottest and driest. That, combined with the decreased mobility (her norm), low tone (her norm), the slowing side effect of cannabis (new) and seizure medications (her norm) got her into a bit of trouble. We've got a plan, now -- Miralax every day for a week or so before reconvening. The plan gives me some peace of mind, but even Oliver said with considerable rue that he regrets how irritated he felt with Sophie over the last few weeks as she moaned and groaned and obstinately resisted drinking and sitting. I hate to say it, but what can you do? If I lived in medieval times, I'd walk with the flagellants, I guess, do some sort of penance for my human weakness. Instead, I'll chalk it up to nineteen years of dealing with other shit (like the procurement of chariots) that has taxed my stamina and made me very, very weary.
Tuesday, October 28, 2014
Sophie took a bit of a walk this afternoon with Carmen, a sight for my sore eyes. She's a hardy one, that Sophalofa. Less so her mother who lay on her back on a bed most of the day, newly traumatized. I'm getting too old for this shit, to tell you the truth.Two glasses of wine a few hours later, some grilled bread with burrata, an artichoke with aioli, a few mussels and some french fries, some catching up with my friend D and I'm back on the bed, ready for sleep, the fresh trauma burned away.
So, I know why Sophie has been so agitated lately, moaning and flinging herself around. She's been in severe pain. After ten hours in the ER yesterday, x-rays, CAT scans, blood draws, urinalysis, morphine, Ativan and much poking and prodding with the suspicion that she had a bowel obstruction, they determined that she had impacted stool. My good friend Moye sat with me for hours in the ER which kept me on my best behavior. Best behavior for me means a tired resigned air when the lab "lost" the blood tubes and they had to come in for more sticks. It means I only gently corrected them from administering a bolus of Benadryl to "calm her down" because Sophie has a paradoxical reaction to Benadryl. I'm devastated that Sophie's been so uncomfortable for so many days, maybe even weeks, but I'm strengthened by the confirmation of my instincts. I just knew something was wrong. It was an exhausting day and night, to say the least, but the nurses and physician assistant were remarkably kind and competent. Today, it's all Magnesium Citrate and enemas. The shit, literally, has hit the fan.
Sunday, October 26, 2014
|Source unknown, via The Internets|
I'm finishing up Elizabeth Taylor's Angel and would say that it's a slow but beautifully written read whose torpor appeals to me. I've always been a sucker for the slow read, where characters unfold with events as opposed to events unfolding with characters. I think of Trollope, Eliot (George, not T.S.), the Brontes and Austen -- the novels that, when finished, leave you aching not so much from what has happened but more because you'll miss the characters. Here's a little bit of Angel that made me nearly laugh out loud and certainly sigh in admiration:
He thought her extraordinarily placid. He sent for a cab and took her to tea at Gunters; the least he could do, he supposed. She was arch and gay as if she had come to London solely for this treat, and he wondered if she had ever been taken out to tea before; with that moustache, he rather thought not.
I've just begun David Grand's Mount Terminus and will report back at some point if I don't get lost in W.S. Merwin's new book of poetry, The Moon Before Morning.
Reader, what are you reading?
Saturday, October 25, 2014
Sophie won't stay still, and when it doesn't make me crazy, it makes me -- crazy. I don't know what to do about anything lately, and every admonition to just breathe, the majority of which come from within, I feel even crazier. Tonight, I fed her dinner in her stroller thinking I'd have more control, but rice and Korean beef went flying and juice dribbled out as she panted and flung her head back and forth and fidgeted and for a moment I wondered if she had Alzheimer's or some sort of brain tumor that was making her do what she's doing, behaving this way, and then I thought that if she had a brain tumor, she'd probably also be vomiting or at least have a headache and then I thought if she had a headache, she'd be in pain, but maybe not because the time her tibia snapped during a seizure, she didn't walk on it, but she didn't cry or feel any pain that we knew. It's all very complicated and it's all absurd and while you might wonder how we do it, I want to say that sometimes we don't do it, and tonight is one of those nights when I wonder who I'd be without this.
|With cousins in Florida, sometime in the late 1960s|
The sense of being far away is not something to overcome but to respect and include in loving awareness. This is the way to work with our difficulties, to include them and learn from them. Feelings that seem like adversaries can become our allies when they’re included, and mindfulness offers us nobility and joy as we open to what is present completely.
In fact, there can be something more authentic in the times you feel something’s missing than when you feel satisfied. The more deeply you practice, the more you realize how much there is to learn. Even the self that would judge your experience is not a problem to be fixed, but to be held with compassion as part of the path.
This is a way to keep loving awareness in the center of your life, even when it feels far away. Remember, where you are now is the perfect place to practice.
Founder and Guiding Teacher of Insight LA
from The Perfect Place to Practice
Friday, October 24, 2014
Oliver and I had a Friday field trip this week to the Los Angeles County Museum of Art where we visited an exhibit called Samurai: Japanese Armor. We had studied the samurai last spring in our world history book, so it was a nice complement to what we'd learned. Whether you're into Japanese warriors or not, and I'm actually not, the whole thing was spectacular. Those guys knew how to dress, and the artistry was fantastic. The fact that these elaborate costumes on both man and horse are from as early as the 14th century made the whole thing thrilling.
Reader, what did you do today?
I have no other photos from last night -- the Shebooks reading in Eagle Rock -- than the one above which cracked me up, unless you want one of the great Denise Emanuel Clemen, author of Birthmother, and I about to plant a big smack of a kiss on one another's lips for a mutual friend who couldn't make the event. I'll spare you that sight, though, and just say that the event was wonderful. I'll post the links to the short memoir and fiction of the other writers and mine, so if you're hankering for some awesome writing and have an extra $2.99 lying around, go for it!
On another note, I'm currently in the business of just say no, with a sort of twist on Nancy Reagan's ridiculous admonition so many years ago. The twist is that the advocacy is in the field of medical marijuana and getting lawmakers to ease up on the laws. There's a formidable group of women and men who work diligently on all of this, and I've done my best to publicize their efforts here on the blog and on my Facebook page. I was, at one point, one of the designated advocates to work on the issue in California, but this morning I decided to just say no. To be honest, other than writing religiously here about the issue, particularly as it pertains to Sophie, my efforts have been minimal. I am comfortable with what I've shared -- our personal experience -- and believe passionately that every single child in this country should have the same access to a medicine that might help their own child with refractory seizures or other diseases. I also believe that marijuana should be legal -- yes, even the stuff that makes you high. Period. However, I just don't have it in me to do the non-profit foundation stuff anymore. I don't want to be a part of an "army" with all that entails -- the war imagery, the in-fighting, the politics, the politics, the politics. I really don't have it in me. I've told myself that wimping out is my perogative -- after all, I've been doing this for nearly twenty years, and many of the people working on this current "campaign" have very young children, have no inkling of the toll it takes on some people, year after year. I feel that toll, and I'm actually not ashamed to admit to it.
So, I'm just saying no. When I stare at that sign about walls, I think, of course. I am a wall in many ways, very strong and built of peasant stock. Many people lean on me, have leaned on me, continue to lean on me, and that's good. I'm grateful for my strength and grateful that I have the wherewithal to provide support. At a certain point, though, I will fall, and just as I realized very suddenly one day long ago that I was in charge of Sophie and that the medical world was not going to help us, I realize that I am in charge of me and have to minimize some of the leaning. Does that make sense? I'm not saying that I don't want to help anyone anymore. I'm just saying that this campaign is just too much for me right now, and I'm backing out.
Here are the Shebooks links. You can also buy these titles on Amazon!
Elizabeth Aquino Hope for a Sea Change
Denise Emanuel Clemen Birthmother
Laura Fraser The Risotto Guru
Mona Gable Blood Brother
Zoe Rosenfeld Owl in Darkness
Wednesday, October 22, 2014
As the world shifts its attention from Ebola and reels from the news that another Hollywood celebrity has chosen to butcher her original face for a new one, those of us in the medical marijuana community got a sad email and update from Realm of Caring who had been in the process of removing people off of its many thousands waitlist with the intention of shipping them Charlotte's Web Hemp Oil. Here's the gist of the email:
Unfortunately, despite the fact that the U.S. imports more hemp foods than any other country, the common association of CBD with high THC cannabis has caused more scrutiny for these hemp products than expected. For example a Minnesota mother may be facing charges for possessing a CBD product which she obtained for her son. Such tragic events, combined with the ever changing legal landscape of hemp/CBD products, have forced us to reconsider all potential ramifications of our previous distribution plans. Simply put: the last thing we want to do is put the families we serve in jeopardy.
As a result, at the strong advice of our legal counsel, we have decided it is in the best interest of both present and future clients, as well as the longevity of the ROC program as a whole, that we hold our distribution plan to higher standards than the conventional hemp industry.
We sincerely apologize to those of you who will be most affected by these changes. We ask for your patience, understanding, and help as we work to educate and comply with federal agencies and to change the laws which block people from safe access to products like Charlotte’s Web. Please know that we are doing everything we can under the circumstances to help as many people as possible.
In a nutshell, even by classifying the high CBD product as hemp, the Stanley Brothers and Realm of Caring are concerned about the risks people who acquire the oil for their children might have in those states that don't have laws like California's and Colorado's. To protect them from possible prosecution, they state that they will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. I know many people who were so excited, so uplifted by the prospect of finally getting Charlotte's Web. They have children with epilepsy -- children who have all had uncontrolled epilepsy despite numerous medications and treatments over many years. These are children like Sophie who went nineteen years without significant respite from seizures and the side effects of 22 medications until she tried Charlotte's Web.
This is a complex issue, and I've felt uncomfortable at some of the infighting that sometimes occludes what this whole thing is really about -- our children's quality of life and ability to live to their full potential. I couldn't begin to explain it all here on this blog. The people at Realm of Caring and elsewhere are working incredibly hard to advocate on so many levels, and I am holding my breath that change will come sooner rather than later.
In the meantime, I hope you'll educate yourself about this issue. Here's a great PDF file (I think you can access it, but if not, go to the Realm of Caring website for more information) to read more information about this latest development. Put pressure on your legislators, put pressure on the federal government to help make these changes. It's absolutely critical.
And here's a great story that appears in Time Magazine.
any unplanned event that causes the closing of one lane of traffic for 30 minutes or more
defined by California Highway Patrol and originated in 1955
by Lloyd "Sig" Sigmon
This morning, when it was still dark outside, I texted a friend that I'd be looking for signs today. I didn't mean street signs, but real signs that everything was going to be ok. Then I put on my red dress (see yesterday's post) and got out of bed to fix Henry's breakfast and drive him and the rest of the carpool to school. It's quite a haul to Henry's school -- probably only five or so miles that can take anywhere from twenty minutes to hours, if there's a problem on the 101N. This morning, there was a problem on the 101S, though, which meant my ride home was going to take a looooooooooong time.
Was this my sign?
I surrender to traffic, to tell you the truth (but do complain about it a lot). It doesn't make me angry as much as it makes me feel entirely weak, whimpery and ineffectual. At best, my mind wanders into the realm of -- well -- I don't know where it wanders. I think of nothing. You won't find me in a state of road rage other than an occasional derisional word I'll direct toward the weaving BMW driver (why, why do all BMW drivers act so cocky?), and this morning was no different. Once I heard on the radio the dreaded SIG Alert words, I decided that I'd take Ventura Blvd home and listen to Mary Shelley's Frankenstein, but since everything today was going to be significant, a sign, I felt repelled by the reader's placid English voice and realized that I didn't want to think about horror and the creations we've wrought on this earth (because everything just is) even as brilliant metaphor. I pulled into a Jon's parking lot to download some Pema Chodron. Her name popped into my head, so I took that as a sign. I thought I had chosen a book, but it turned out to be a seminar that she taught, and my mind wandered to the sound of her sweet voice and gentle laugh as I meandered down Ventura and then into Hollywood.
Be compassionate and kind toward all beings and particularly yourself, Pema said. I closed off that line of traffic in my head that's bogged down, stuck and afraid, and felt my heart open up right there in my red dress in my sexy white Mazda on Ventura Blvd.
Tuesday, October 21, 2014
Lying around all day
with some strange new deep blue
weekend funk, I'm not really asleep
when my sister calls
to say she's just hung up
from talking with Aunt Bertha
who is 89 and ill but managing
to take care of Uncle Frank
who is completely bed ridden.
Aunt Bert says
it's snowing there in Arkansas,
on Catfish Lane, and she hasn't been
able to walk out to their mailbox.
She's been suffering
from a bad case of the mulleygrubs.
The cure for the mulleygrubs,
she tells my sister,
is to get up and bake a cake.
If that doesn't do it, put on a red dress.
Monday, October 20, 2014
Weird, right? These new phones are a marvel. I am not an iPhone lady, but I am a Samsung Galaxy lady, and Oliver showed me how to turn a plain old photo into a stylized creation. I don't know what you call this, and it's not even an app, but the possibilities are endless, and I wasted a good bit of time twiddling around with different settings today. Maybe it wasn't really wasted time, though. I also taught Oliver about grammar (subjects and predicates), read him some history (the relationship between women fighting for their rights in the eighteenth century with the abolitionists) and listened to some Johnny Tremain, as we drove around the city. Yeah, remember old Johnny Tremain? I read it in eighth grade, too, and while I didn't exactly love it, I remember it, and there's comfort for both Oliver and me that he's reading something at "grade level," for what that's worth. This homeschool thing is a lark most of the time -- I wish everyone would take a jab at it and help me to dispel some of the illusions about it -- or delusions that you have to spend $40,000 a year for your kid to learn. But back to the wasting of time (not money). I confess to being bored out of my mind whenever I see one of those posts or news clips about how technology is killing our children or how we're being sucked into the internets, forswearing all social connections. Or the end of books or film or Buffalo sandals and appropriate underwear. I'm sure there are plenty of folks out there who have troubles with monitoring their screen usage (and I'm not above yelling at Henry, in particular, to put that thing down!). just as there are those that watch too much porn or drink too many glasses of wine or smoke too much pot, but let's face it. The things are here to stay, and rather than freaking out about them or instituting those unplugged rules, why doesn't everyone just relax? I have this theory that as technology pioneers, we are really just caught in the slipstream of where we're going. Does that make sense? We can't see that far ahead.
Los Angeles! Come to our Shebooks Shebang!
Shebooks Party and Reading
7:30 - 10 pm
Center for the Arts, Eagle Rock
2225 Colorado Boulevard
Los Angeles, CA 90041
The night will feature drinks, music and readings from Shebooks authors:
Denise Emanuel Clemen