Helping Hands Needed

A reader sent me a lovely email about this blog and about the community that has grown up around it. She is a mother of two children, one a young girl with Down Syndrome and the other a teenager with significant and crippling anxiety and depression. I asked her permission to post her question here, because I just have a feeling that someone out there reading might be able to help her. If you can answer, please leave a comment or email me your contact information. If you yourself write about these issues, please let us know! My email is elsophieATgmailDOTcom.

Do you know of any blogs written by moms, or dads, of teens with major depression/anxiety?   I've been looking for a really insightful one, with really good writing. 

Thank you so much. 

Dandelion Wishes

I was washing the crepe pan in the sink, the water was running and I thought I heard a thump so I turned the water off and walked to Sophie's room. Hearts beat fast immediately. They remember. Tonight, though, there was no body on the floor, no blood pooling, no girl on all fours, struggling to get up. Sophie stood at the door, her curls more a  dandelion of wishes yet blown than halo. She walked back toward her bed and sat down. I stood at the door and said, Hey there. I'm just washing up the dishes. Wanna come inside with me? She kind of looked at me and then away, but for a moment, I could imagine her reply, could almost hear it.

Cannabis Oil Questions Answered #3

How does Sophie take Charlotte's Web, and how much does it cost?

A lot of people don't realize that Charlotte's Web is a tincture with an olive-oil base and that it's easily drawn up in a small syringe and placed in the mouth. It tastes like olive oil with a faintly bitter tint, but I'm what you call a super-taster, so I imagine Sophie doesn't taste much of anything. The doctor recommends that it be given with either avocado or full-fat yogurt, but we don't always do this, either, as it's given three times a day, apart from Sophie's other medications. She gets it in the early morning, in the afternoon when she gets home from school and then around 10:00 at night. For the last dose, she's usually sleeping, but we're able to get it in her mouth without waking her up, and I've perfected the art, even, of getting her to swallow by rubbing her throat lightly or the sides of her face. I know that people give the medication through G-tubes, too.

As for cost, currently we pay $.05 per mg. I am averaging about $300 for a one-month supply. I know that's a lot of money, but to put it in perspective, I currently pay nearly $200 in co-pays for Sophie's medications, not counting the pharmacy deductible, and that's with private insurance and secondary Medi-Cal. Some of you long-time readers know that my co-pay for Onfi was nearly $500 a month until I got it from Canada for $61 and then found a non-profit foundation that picked up the co-pay. When we finally shed our abysmal Anthem Blue Cross policy and added Sophie to our Health Net plan (thank you, Affordable Care Act), we had to pay a slightly higher deductible, but they added Onfi to the formulary and picked up a greater portion of the Onfi cost (still hefty at $70). I pay $100 co-pay for the Vimpat. And we can't forget that those drugs do nothing for Sophie's seizure disorder, have horrible side effects and are a hellacious pain to wean.

I think I've said it before, but there's not much that I wouldn't do to come up with the money to pay for Charlotte's Web, given that it has cut Sophie's seizures down by more than 95%. You can go with that where you will.

Questions?




Other Cannabis Oil Questions Answered:

# One
# Two

Urban Observations and Musings on Mindfulness and Disappearance

I left the CVS last night at dusk and on the way out listened to a woman, on her way in, lamenting the death of Robin Williams. It took a moment for me to realize that she was not all in her right mind, as they say, because she was asking questions of no one in particular. Robin Williams is dead? Was it a suicide or did his wife kill him? For not doing the diapers? I made tentative eye contact with her, and she asked Do you want to change dirty diapers?

As I walked home, I realized that in my purse I carried nearly $1,000 of a powerful narcotic but that I was hardly the richer for it. I also carried a $12 razor and $20 razor blades for my older son. Narcotics and razor blades nestled in a brown leather purse.



Today I took Sophie to her every three month or so neurology appointment. While I really like and admire The Neurologist, have I told you how much I hate my life when I have to go to hospitals and appointments with Sophie? You'd think at this point that I'd be sort of numb to it all, but I'm not. At the very least, my mindfulness practice enables me to identify that the physical nausea, elevated heartbeat, stifled whimpers that would so much like to eke out of my mouth, and pinprick of tears behind my eyeballs are all just -- there. I can just acknowledge them as visitors, in a way, not suppress them or hate them or indulge them. It's very precise work, though, to do that -- one of those tightrope walks that I've told ya'll about. I have no idea why I have this problem, if you can call it that. At worst, I fantasize about various ways I could disappear -- not so much suicidal thoughts or death wishes but just an end to it all.


Those legs in that photo belong to three women who were in the waiting room in the neurology department this morning. Directly behind them is a sign on the wall in large letters, spelling out the word:

C O N Q U E S T

Whenever we go to see The Neurologist, I stare at that word and the plaques below it, memorializing the generosity of various people who, I guess, have helped to conquer neurological disease. I rarely feel gratitude when I look on this but rather am reminded, again, of how much I hate the medical world and, particularly, war imagery. Don't get me wrong, I'm grateful that I'm not waiting to see a doctor in Africa -- let's say -- where the walls and floors are speckled and splattered with Ebola-infected blood. The world is vast and cruel, my own issues and problems dwarfed. I just hate the idea of conquest and warriors and all that lingo. I make myself laugh by thinking it should read:

D A M N A T I O N

or maybe:

H O L Y  S H I T

I recognized a kindred spirit in one of those three ladies attached to the legs in the photo. She was an old woman, flanked by another old woman who was her sister and a middle-aged woman who was her daughter. I know these things because the three of them spoke loudly throughout our wait to see The Neurologist. The kindred spirit woman was the one who had some sort of problem, and while her daughter and sister were relentlessly cheerful in the manner of those who aren't sick, she said at some point or another that rather than have the test, which I think was a spinal puncture, she wanted to just go ahead and die. The middle-aged daughter remarked that her mother was so negative, and the sister, who was markedly thinner and sported a bouffant hairdo and make-up, opened her mouth in a sort of gasp and declared, Well, then, who is going to take care of me when I am older? I sort of wanted to get up and go over to the sick one and put my hand on her shoulder, tell the other two to knock off the positive shit and then say, Let's get the hell out of here, but just about then, the male nurse called out Sophie's name so I got up and reluctantly walked away. I did hear my kindred spirit tell her sister testily that she did have two daughters to help her out, but the sister said, It's not the same thing, and you need to cooperate and have a better attitude and then I was out of range, on my way in to juggling Sophie while the nurse tried to get her blood pressure and to walking her up and down the bland hallways waiting for The Neurologist to appear. 

I confess that the fantasizing happened in the parking lot, after the appointment, when I forgot where my car was parked, an occurrence that happens so regularly as to belie my otherwise formidable memory. Again, mindfulness practice helps, but oh, to disappear.

In this crazy world, it's good to know that there are still people who

believe they will bring the needy to Jesus, even on Hollywood Blvd in the middle of a 90 degree afternoon.



Hold fast to dreams
For if dreams die,
Life is a broken-winged bird,
That cannot fly.

Langston Hughes

This Night Only

I opened up this file last night while I sat on Sophie's purple beanbag chair and the sun went down and the super moon went up.

Rexroth's voice was an incantation, and the Satie tinkled behind.

Let's go to Malibu.

Listen to it here.

Here:

An Easy Song

"It’s rained every day since you
Went away. I’ve been lonely.
Lonely, empty, tenderness —
Longing to kiss the corners
Of your mouth as you smile
Your special, inward, sensual,
And ironic smile I love
Because I know it means you
Are content — content in French —
A special, inward, sensual,
And ironic state of bliss.
Tu es contente, ma chèrie?
I am, even if lonely,
Because I can call to mind
Your body in a warm room,
In the rainy winter night,
A rose on the hearth of winter,
A rose cloud standing naked,
In the perfume of your flesh.
Moi aussi, je suis content."

Kenneth Rexroth

And here:

Air and Angels:This Night Only

Moonlight   now    on Malibu

The winter night    the few stars

Far away   millions    of miles

The sea   going on    and on

Forever     around   the earth

Far    and     far     as your lips    are near

Filled    with the same light     as your eyes

Darling     darling     darling

The future     is long gone by

And the past     will never happen

We have     only this

Our one forever

So small    so infinite

So brief    so vast

Immortal     as our hands that touch

Deathless     as the firelit wine we drink

Almighty      as this single kiss

That has no beginning

That will never

Never

End

Kenneth Rexroth

Words that DON'T Intimidate

It's another one of those days when I resolutely stop reading the hard news and skip right to the arts. I devoured an essay about the sculptor Louise Bourgeois, and instead of skipping over the word that I sort of understood in context, but really didn't quite know the meaning, I looked it up.

Here's to beautiful words.


o·nei·ric

ōˈnīrik/

adjective

formal

adjective: oneiric

1. of or relating to dreams or dreaming.

Origin

mid 19th century: from Greek oneiros ‘dream’ + -ic.

How We Do It: Part XLVII

Remember the days when your children were babies and toddlers, and you had these long days to think of things to do with them without going insane yourself? This isn't a post about letting children be bored (a conversation that the bourgeoisie takes on with constant angst) or thinking of creative ways to entertain their every waking moment. This isn't about the boring conflict between helicoptering, Tigering and laissez-faire parenting. The moments I refer to are the moments when you've already left them to boredom or self play for some time and are actually at risk of neglecting them. You know what I'm talking about, right? With a baby (Oliver), a toddler (Henry) and a disabled child (Sophie), there were days when I'd rustle all three of them to the park or the beach, if I was feeling ambitious, and there were days when a trip to Venice to go through the drive-through Starbucks sufficed. I could buy myself an iced latte and hand Henry a cookie or two that he'd feed himself and Sophie, reaching over the baby seat where Oliver slept. That's an interesting story in and of itself, actually -- the fact that Henry at three years of age was perfectly capable of feeding his big sister, but I won't tell it here. One of the interesting and most challenging aspects of having a daughter with severe disabilities is that this phase of figuring out things to do with your child goes on for -- well -- ever. For me it's been more than nineteen years. While I let Sophie tootle around her room for hours at a time, checking in every now and then to turn on music or change her diaper or even just to lie with her and give her legs and feet a massage, I feel, if not guilty, then perpetually self-conscious. Irrational or not, and please don't assure me that I'm doing a good job, I always, always, always have the needling thought floating about my brain that I should be doing something more. Henry went to lacrosse practice this afternoon, and Oliver went to the Y to work out. I took Sophie to the car-wash, the kind that you drive through, because it was something to do with her. I have strings of plastic beads around the head-rest of my seat in the car, and Sophie sits directly behind me. She loves beads and will reach and play with them for the entire time. But she also loves the car-wash, so for those moments when we sat in peace and listened to the brushes on the window and watched them fill up with soap, then listened again to the water pounding on the car, I felt free of the niggling worry and doubt and guilt that plague many of my days.

Pacific and Atlantic

Yesterday, Oliver and I swam in the Pacific, me up to my waist in blue water with seaweed wrapped around my ankles and Oliver all the way in, laughing and sputtering. The beach was an uncharacteristic gray yesterday, but the water was the perfect temperature -- the kind of cold that takes you a moment to acclimate to but then restores to what, for me, I imagine is my primitive, free self. The Pacific is infinitely colder than the Atlantic, at least the Atlantic of the south, and much of the year it's frigid cold, but in August and September, it's just about perfect. I've morphed into a Californian, and my boys are natives. Oliver agreed with me that the ocean in Hilton Head, where we most recently submerged ourselves, is more like a bathtub than anything else, and while that easy, gentle warmth is relaxing, the bracing blue of the Pacific is what we really love. And there are no jellyfish! Oliver shouted to me, over the roar of the surf.

PTP and #don'tstarepaparazzi

Oliver and Sophie, September 2001

Oliver and I strolled with Sophie up to the CVS to pick up her Onfi, and while we waited for yet another snafu with insurance (8 pills cost just as much as 30, a whopping $70 co-pay) to be resolved that I won't bore you with, we entertained the open stares of two children. The fact that they were wearing their pajamas and their father was dressed in the long black robe with prayer strings hanging out didn't seem to affect their ability to openly gawk at Sophie in her stroller. The father apparently had no sense of irony, either. Both Oliver and I found this amusing, but when we walked home and ran into two little girls whom we see quite often in our neighborhood, as they ride their scooters up and down the street, yet who don't appear to feel any friendliness toward that freaky girl in the wheelchair, Oliver asked me whether he could have PTP. 

What's that? I asked, smiling kindly at the girls despite their rudeness. It was a glorious day, and I was happy to have gotten through the snafu at CVS. I'm planning on making this particularly delicious dinner tonight, too, a one-pot meal with shrimp and tomatoes and spinach and feta and lemon. I also bought a cheap bottle of Lambrusco at Trader Joe's and was feeling all happy hourish.

Permission to Punch, Oliver explained, and when we crossed the street, using the new curb cuts that we'd wrestled to get from the city, he pushed Sophie's stroller ahead of him, then stopped, turned around and yelled across to the girls standing, still staring on the other corner:

What's your problem? Why are you still staring. YEAH! Keep staring! He shook his head like an old man, and we when we rounded the corner and walked toward our house, I asked him whether he remembered the bedtime stories I used to tell him and his brother when they were little, the ones about Sir Henry and Sir Oliver whose gallantry and chivalry were a marvel and whose defense of their sister Lady Sophie was the talk of the kingdom. He said, Yeah, I loved those stories. Then I thanked him for being so strong and gallant and asked him whether he felt better, expressing his anger, and he said, Not really, and I said that's the bummer about anger, although sometimes it's justified, and this might have been one of those times. Then he pulled the toy handcuffs out of the drugstore bag that he had wheedled out of me at the CVS because we had to wait so long, and as we pushed Sophie's chair up the small hill to our front door, we joked that next time we'd grab those girls and those small children and handcuff them.

The Best Thing About This Post is the Book Angel Food***

Question of the Day:

When does being patient mean you're being an asshat and actually need to be impatient?

This morning I did the usual scanning of the headlines, not stopping at the inferno in Gaza, the contemplation of bombing northern Iraq, the alleged beheading of children in Iraq by ISIS with their heads on sticks, the drought in California, the increased security at USC due to the recent murder of a Chinese student -- shall I go on? I honestly didn't read further, but I did laugh aloud at an Onion headline and article that reported on a new Glaxo medication for people who just feel weird. Maybe we should just read the Onion and call it a day every day. I was thinking about people who don't "believe" in global warming or who continue to water their lawns into emerald greeniness in defiance of water restrictions here in southern California. I wondered if these kind of people just have an earlier snapping point than those of us who kvetch about global warming, feel dread about impending catastrophe, buy sulfate-free shampoo and eschew toxic laundry detergent and dishwasher soap. This isn't a judgement of them, just a wondering. This morning, as I showered in my Barbie bathroom, I looked up and noticed the paint peeling at the top of the tile which made me think that it had been a while since I'd wiped the ceiling there with bleach or Clorox and it probably harbored all kinds of mildew and bacteria, invisible to my eye. I don't think I ever think about cleaning or laundry or household tasks without thinking about environmental poisons, and then I feel not just exhausted but like an elite idiot who has way too much thinking time on her hands. Just freaking clean it with the toxic stuff, I thought, what does it matter? We're all doomed. Maybe the reason why some people don't believe in global warming is because they've just reached that breaking point a tad sooner than I. Or maybe not. Maybe they truly believe that God did indeed give us dominion over the earth and we're in charge. Or maybe they're just stupid. That was a judgement.

I've already done a bit of back and forth with both the neurology office and the company that is ordering Sophie's wheelchair, and it all calls for patience. Evidently, MediCal stops at Sophie's epilepsy diagnosis and wonders why she can't just be plopped into a regular wheelchair (the kind that elderly people order at airports to take them to their gate) so we can all call it a day. What is the medical necessity of this ordered wheelchair with its positioning and shoulder straps and what, exactly, are her disabilities beyond the seizures and severe developmental disabilities, including no self-awareness, no protective safety reflexes, being non-verbal and cognitively delayed (yes, we have the medical report from the neurologist, but it's not enough!)?We need more documentation! We need more paper! Patience. Patience. Patience. I shall be patient, even as I strain to show impatience. 

The Onion might have a headline like this: Woman Orders Over-the-Top Wheelchair For the Hell of It With Plans On Pulling One Over On Medi-Cal for Each of Her Children. She Also Submitted A Request for a Winged Chariot.

I feel weird today and should probably take one of those pills that Glaxo is selling.

***If you peer up at the left-hand corner of the photo above, you'll see a copy of my friend Brittany's novel Angel Food, open to its last pages. I will write a review of this crazy, beautiful, rocking book soon, but until then go and buy it here. It's definitely the best part of that scene photographed above -- the papers, the papers, the papers.

Asking for a Winged Chariot

So, about six months or so ago, I began what I knew would be a long process to get a new wheelchair for Sophie. Those of you who know of these things will nod your head and probably don't need to read any further because you probably have post-traumatic stress disorder and what I'm about to write will probably trigger whatever form yours takes. Those of you curious about the small stuff with which we caregivers regularly deal should stick around for pure entertainment. Have I ever told you that it's the small stuff that can actually break you when you've been doing the care-giving thing for nearly twenty years? Along with God never gives you what you can't handle, and Sophie picked you as her mother because she knew how great you are, and There's a place in Heaven for you and a better life after this one, Don't sweat the small stuff is a very irritating adage. Honestly -- I've got the equanimity thing down, for the most part. I actually don't really sweat the big stuff. I can go to bed each and every night with the passing thought that I might find Sophie not breathing in the morning, a victim of SUDEP, and actually sleep just fine. I can watch tens of thousands of seizures and feel like I'm being stabbed in the heart every time but still manage to speak calmly and even negotiate how many Oreo cookies the "regular" children will get after dinner. I've talked to my comrades, and they all agree that sometimes it is the small stuff that makes us sweat.

Anyhoo. (New readers, please note that I despise this expression and reserve its use for posts dripping with sarcasm like this one.)

Sophie needs a new wheelchair. Even though she can walk, she tires easily, needs total assistance while walking and has a form of cerebral palsy that prevents her from walking long distances. Her old wheelchair is ratty and uncomfortable and a tad too small. She needs a new one, in particular, so that she can ride a bus home from school in it and avoid the precarious descent down the stairs of the regular bus which is a lawsuit waiting to happen. I began the process of getting approval for the new wheelchair about six months ago when a very nice woman visited our home and took measurements and helped me to pick out the chair that would work best for Sophie. After that, the trouble began. Sophie has private health insurance (thank you, Obama!) and secondary Medi-Cal, which is supposed to pick up anything that the private health insurance doesn't cover. I don't even know if I'm able to relate here, clearly, how complicated this whole process has become. The order has to be denied by CCS (California Children's Services), which Sophie does NOT have, before Medi-Cal will even review it, and that paperwork has to be filed BEFORE the primary insurance is even consulted. I keep smelling bullshit but not strong enough for me to do my usual smoking bread stick shenanigans (again, new readers -- I have a long history of dealing with insurance companies and pharmaceutical companies, during which I generally am on hold and smoke a bread-stick to calm down. You can go to the search bar on my sidebar and find these posts, if you're so inclined). The Neurologist had to write a letter stating the medical necessity of the wheelchair, but this couldn't be a simple letter. It had to have progress notes and all sorts of folderol, which I'm sure is necessary because of all the MediCal fraud going on and which I'm happy to oblige, but after six months or so, I'm really just sweating and sweating a lot.

You'd think I was requesting a winged chariot.

I'd use some rude curse words, but I don't want to alienate the Powers That Be or mothers or fathers who might be reading here, so I'm going to reserve those words for next year when the whole hideous election cycle gets going, and we'll be subject to the likes of Rand Paul and Sarah P and that guy from New Mexico and all those people who want their country back and want the gays to go back in the closet or the brown children to go back to where they come from and women to keep their legs closed and everyone to pray at school and have the liberty to carry a gun into Target to kill the people who threaten them. Where was I?

Oh, yeah. Sweating the small stuff. In the grand scheme of things, getting a proper wheelchair for Sophie is really not such a big deal, nothing compared to the seizures, the risk of SUDEP, financial distress, the great, black cloud of what we'll be doing when she turns 22 and can no longer go to school. Those big things, though -- I'll deal with them as I've always done. They actually enlarge me in the best way.

The small stuff? The making a medical case for a chariot drawn by winged horses? The process to get a prescription for Onfi changed to the liquid form so that I don't have to use the razor cutter to divide the dose for the next wean (a PTSD trigger for sure)? The going to another IEP to state that Sophie needs a wheelchair bus, not a regular bus but now still a regular bus because the winged chariot is not yet ordered?Not only does it make me sweat, but dealing with the small stuff also has chipped away at nearly everything by which I used to identify myself: being sweet and kind and graceful and yielding. I'm now a point, very, very sharp yet not quite broken.

Crystal Hoping

I was drawn toward what seems to be either a Blue Storm or Crazy Lace agate ring yesterday when I wandered round the city post-fried green tomato, bacon and lettuce sandwich, so I bought it from the 50% off bowl. It fit me just right, and today when I looked it up, this is what it supposedly does if you're into all that crystal healing stuff:

Gray Agate is a grounding stone, bringing about an emotional, physical and intellectual balance. They aid in centering and stabilizing physical energy. Gray Agate has the power to harmonize yin and yang, the positive and negative forces that hold the universe in place. It works slowly but brings great strength. Its multiple layers can bring hidden information to light.

Psychologically, Gray Agate gently facilitates acceptance of one’s self, building self-confidence. It also aids self-analysis and perception of hidden circumstances. Gray Agate enhances mental function as it improves concentration, perception and analytical abilities, leading to practical solutions.

Emotionally, it overcomes negativity and bitterness of the heart. It heals inner anger, fostering love and the courage to start again. It is useful for any kind of emotional trauma. It creates a sense of safety and security by dissolving internal tension.

Here's hoping, right?

Fried Green Tomato BLTs, Rending Your Garments, Whimpering and the Beach

I ate a fried green tomato, bacon, and lettuce sandwich today, after cooperating and doing the right thing by getting a mammogram and taking care of my daughter, even when I'd rather not. The tomatoes were thinly sliced, lightly breaded and not greasy at all. There was also an egg with a perfectly cooked yolk on the sandwich, neither runny nor hard-boiled. And instead of regular, there was some sort of wasabi mayo, but not so hot that you felt it, and the bacon was thick and crispy. I suppose that was the extent of my not being cooperative today -- it wasn't exactly healthy, this sandwich, and Lord knows, I should be eating healthy so that I can continue to cooperate with life's vicissitudes. One of those vicissitudes is the frustration of not having the higher ratio Charlotte's Web to give to Sophie to see whether we can regain the seizure control we had when she last had it. The good people at Realm of Caring are working on it, though, so I haven't lost heart, even as Sophie's hands are clammy and she drops glasses and shatters them, looks to the right and freezes, jerks for a moment or two and then looks forward and continues whatever it is she's doing or thinking. She's being.

I also took Sophie to the beach this afternoon because I felt my dead grandmother-self coming on. As you know, she was prone to moaning and whimpering and praying that she'd die, and I was feeling a bit of the same -- especially the whimpering part. I know ya'll think I'm doing a kick-ass job most of the time, and I agree with you only if you recognize that under that resolve is a whimper, a tiny, high-pitched in and out take of air. The days of rending my garments are over, as are the tearing out of my hair or the sliding down the shower wall and crouching under the spray. The whimper, contained below the surface yet close enough to fuel some of my days is the new rend and tear.

Until you go to beach in Santa Monica on yet another glorious summer day --