Vote, Baby

#healthcarevoter
#throwthemout
#resist
#nafacamo

It's NaFaCaGiMo, Folks! Day Eight

Photograph by #BadAssBrotherFaCa Oliver B.

#BadAssMotherFaCa and #BadAssBrotherFaCa
voted today for her, Sophelia Bodelia, because we know her rights as a human being and ours as her caregivers will be served best by a President of the United States who believes in the humanity of every living person.

#Imwithher
#PantsuitNation

First time voter, my son Henry:

It's NaCaGiMo, Folks! Day Seven

I know I've been snippy and snappy and sarcastic about National Family Caregiver Month, and that's mainly because I've developed what I think is a healthy coping mechanism. Being snippy and snappy and sarcastic is a kind of coping vice, I guess, for some of us who don't drink or do drugs or otherwise act destructively when under a whole lot of stress. And maybe it's not much of a vice -- I think that anger and frustration can also be used to fuel change and increase awareness, break down barriers and make the very real problems that we caregivers deal with on a daily basis somewhat more relevant and resonant for others.

Today, though, I'm going to pause and pay homage to my many caregiver friends who've lost their children. Part of the caregiving deal is that many of us think about and experience death all the time. If we're not worried that our children will die before us, we're worried that we'll die before them. At best, this is a messed up situation, an impossible conundrum, but it gives one incredible perspective about living each day and even each moment with an almost reckless gratitude. Over the twenty-one years that I've been a mother and caregiver, I have known many, many children who have died. They were Sophie's friends in preschool and elementary and middle school. They are the children of a few of my best friends. They are the children of the beautiful people I've met online, blogging, and in the larger medical cannabis world. Just last week, another child died, the son of a woman I met at an epilepsy conference who is part of the powerful community of cannabis professionals in Colorado. She and I were on a panel with a bunch of obdurate professionals -- she as a nurse and parent of a child using cannabis and me as a parent of a child using cannabis. I was devastated to hear of the death of her beautiful son Reggie.

Last night I had the privilege of attending the 6th Annual Candle Lighting to Remember, a beautiful event down in Laguna Beach. We each had a paper lantern that we decorated with markers and stickers, sitting at picnic tables on a bluff overlooking the Pacific Ocean. I made one for Reggie, specifically, but my intention for the night was to remember all the children I have known in my family caregiver world who have died.

There must have been at least fifty people who walked down a steep beach path, placed their lanterns in the sand and then dropped a tiny candle inside. As the sun went down in a glorious display of pinks and purples and oranges, the lanterns grew brighter and brighter, undulating out in this beautiful serpentine way across the beach.

When the sun had sunk into the ocean, we collected our lanterns and extinguished the lights and walked back up the path to the bluff above.

May you be happy
May you be well
May you be peaceful and at ease

-- Metta, or lovingkindness

It's NaCaGiMo, Folks! Day Six

This morning, I'm lifting one of my dearest CaGiMo's Facebook status updates for your amusement and education. Here you go:

NaFaCaMo Day 6, election edition.Vote.Yesterday while strolling through one of our neighborhood parks with my son and his nurse we overheard two men talking rather crassly about "ending women's rights." I turned to look at them and saw that one was wearing a sticker for the republican party's presidential candidate. He saw me see his sticker and then yelled, "yeah, that means you babe!" I looked back at him again and he yelled even louder, "next week you'll be done!"Vote.For those who have seen both the video I posted yesterday and HRC's last campaign ad, we did ours before seeing hers so I told my son that she liked ours so much she made her own. Roar.Vote.Sending fierce love and deep gratitude to those who are able to do more than we are to get out the vote.Oh, and VOTE!

***I'm a Bad-Ass Mother FaCa and I approved this message.

It's NaFaCaMo, Folks! Day Five

It's getting closer, and I know I'm preaching to a pretty big choir here with the occasional errant outlier, but this election is whupping our asses. I bought a choker the other day, a black ribbon with a beautiful blue Buddha on it. I don't ordinarily like anything that high on my neck. I hate turtlenecks and claim my decollete as one of my last remaining assets, so I tend to wear necklaces that hang right there, drawing the eyes down from the chin and the crepe -- whatever. I bought a choker the other day because I loved it, and because I felt the visceral need to be literally choked. I don't mean that to sound kinky or perverse -- I just feel choked up and tired, exhausted really, from the whole shebang. I'm tired of reading about it, hearing about it, listening to it and, most of all, talking about it. I needed a symbolic choker, so I bought it and put it on right in the store, vowing to not talk about the election or listen to anything more about the election and to keep it on until Tuesday.

#Imwithher

What does this have to do with NaFaCaMo, you might ask? Well, everything, actually. We've got to vote Hillary Clinton in to office as President because we have the best chance of having our needs as caregivers met. I believe we have the best chance of having our children with disabilities' needs met. Hell, I'm a lefty liberal, so I believe we have the best chance of having our needs as human beings met.

And that's all I'm saying about that.

It's NaFaCaMo Folks! Day Four

Today was a day of light paperwork, spent mainly in organizing the piles of stuff on my desk. Did I tell you that Henry broke his collarbone in a lacrosse tournament about three weeks ago when I was gallivanting around Mammoth taking pictures of fall color? Did I tell you that it was, of course, the only lacrosse tournament that I have missed and the first broken bone of the boys? I guess the fact that Henry is now 18 years old and has never broken a bone is a good thing, but it was a pretty bad break, and he had to have surgery. He's now somewhat laid up as far as playing lacrosse for a few months but healing otherwise quite nicely. I'm only telling you this to emphasize how much easier it was to take care of business with him than it has been for Sophie. He broke his collarbone and was in pain. He took medication, and the pain stopped. He broke his collarbone and the doctor fixed it. He broke his collarbone and the insurance company didn't question the procedure. Bills were paid. Granted, I received the Explanation of Benefits from the almighty Anthem Blue Shield and practically fell out of my chair at how much it all cost (think five digits for a 25 minute surgery and two-hour recovery at one of the fanciest hospitals in the shitty). But I really can't complain. In the twenty one years of caregiving as the CEO of Sophie, Inc., things have actually almost never run as smoothly. And I mean ever. The thing is I received a stack of Explanation of Benefits (literally a stack because each one came with the requisite three pages that listed the languages they would be available should you need translation) for Sophie's hospital stay that happened the week before the broken collarbone. The stack filled me with the usual dread which I imagine is partly due to PTSD which I acquired in the early days of The Troubles when I had to fight tooth and nail for every bit of coverage. Nowadays, I feel dread and mitigate the dread by quickly placing the stack of papers in a pretty folder. I then place the folder on my desk and set myself the task of only dealing with the folder one time a day until any problems relating to the stack of papers in the folder are resolved. This means one telephone call a day or, at the most, two telephone calls a day if I am referred to someone else for the same problem.

That's a caregiver tip: Pick something, anything and deal with only that something, anything. When you hit a wall, put it away for the day. This tip will, of course, not work for all problems related to the caregiving of your disabled child or adult, and if you're in, say, the first decade of doing this stuff you might have the stamina to do multiple things, but I'm warning you it (your stamina) won't last forever and nor will your sanity, your marriage and your general goodwill toward the universe.

The other papers that you see above are also related to my job as CEO of Sophie, Inc., and they address the upcoming IHSS social worker meeting, and the Department of Social Services' changes to the IHSS tax reporting laws. I've covered all identification with my alter ego Marcie figure, a tiny mushroom, a pen from Quicken Loans that appeared on my desk, a few black stars from the PicMonkey app and my beloved F Bomb that my friend Cara gave me for my birthday.

If you're still reading this exceedingly boring post, congratulations. I'll reward you with a picture of where many of these papers will be transferred and sit for many months before being filed in one of the filing cabinets in my house.

You'll notice some plastic bags above the blue basket that holds the papers. These are filled with 1 ml syringes that I use to administer the CBD and THC that Sophie gets. In fact, you can even see the bottle of THC that I store right there, too, across the kitchen from the CBD bottle, so they are not mistaken for one another. Reader, you might ask why? That little bottle of THC is far more potent than the little bottle of CBD, and if the contents of the blue basket begin to really stress me out, I can quickly take a swig and be on my way.

To Mexico.

It's NaFaCaMo, Folks! Day Three

Sophie the Phoenix and her driver, The Pile of Ashes

TEN RANDOM REASONS HOW I PERSONALLY "DO" AND HAVE "DONE" IT

1. LOVE Contrary to what some believe (and probably don't even realize), most of us love our children with disabilities as much as we love our children without them. This means we are committed to not just their welfare, but also to our responsibilities as parents. They are still our perfect babies. This is why when people say they couldn't do what we do, we roll our eyes and growl.
2. GRATITUDE I am grateful that Sophie has a father who loves her, has always loved her and been a wonderful caregiver to her. I am grateful for my sons Henry and Oliver, for the joy they've given me, for the perspective they've given me, for the babies they were and the young men they are. And they're pretty damn perfect.
3. GALLOWS HUMOR Even though I've made a groove in the shower with my forehead where it fits perfectly and from which is etched a narrow channel where tears have mixed with water that pool around my feet, salting them, I generally hit a point where everything -- and I mean everything is absurd. My two sons seem to have inherited this quality (is it a quality or just a characteristic?) as well which I think means the universe is abundant. One of my fondest memories is of Little Oliver, aged six or so, lying on the floor trying to pull a cup out from under a piece of furniture in the kitchen where it was thrown by a seizing Sophie. Who lives like this? he muttered. What kind of life is this? There are those who believe everything is a blessing and has a meaning, ordained by God. There are those who despair and give up. And then there's the rest of us, and we roll around and laugh.
4. MONEY Yes, you've read that right. I'm perfectly aware that money doesn't make for happy or give us a cure (lord knows I've raised so much money for epilepsy research and we all know things seem as dark as ever). What money does, though, is make things easier. You get better healthcare when you have money. My parents have supplemented me with money for as long as Sophie has been alive. I use the money to pay for caregivers or for any expenses related to Sophie's care. I also get money from a program called In Home Supportive Services. Basically, I am paid by the state of California to keep Sophie at home and out of an institution. I'm paid under $9.00 an hour which isn't exactly what I'd probably have made if I'd had the career that I originally planned on having, but the money goes toward the near $20.00 an hour I pay Sophie's helper. Money doesn't just make things easier. It has saved my sanity and my family's life.
5. FELLOW CAREGIVERS I would honestly have died inside if I didn't have my amazing community of fellow caregivers to share the road with me. I'm hard put to write anything but cliche about these men and women who offer support, camaraderie, mutual senses of humor, similar horrendous and wondrous caregiving experiences and always love. The beautiful world of the internets has made this possible, and I'm also hard put to imagine how in the hell I did it back in the dark days of the last century when there was no such thing, when I tossed out my copy of What to Expect The First Year. Oh, yeah. I remember how I did it. I met Jody and Susan and Lauren and Gigi and talked to Eleanor on the phone (literally the only person I knew who had a child with a disability). 
6. MY REGULAR LIFE FEMALE FRIENDS I know everyone has their burdens, but there ain't nothing like having a child who is severely disabled. That being said, my friends who have not been uniquely blessed and cursed have taken me out of that very small world and supported me. We drink and laugh and go out to lunch and to see movies and complain about our teenagers. I have some online relationships with fellow writers and bloggers who sustain me as well. It's a beautiful world.
7. MY PROGRESSIVE POLITICS I have a relative who once bragged to me that despite his unemployment and economic duress, he never accepted or expected help from the government. We all need one another, and I'm telling you that no family member or even neighbor is going to help me out in the way that I need help. I'm talking about changing dirty diapers for decades, lifting my daughter into and out of a wheelchair and a car, buying her drugs to keep her alive that cost thousands of dollars a month and providing her with a quality of life that is stimulating and has a modicum of beauty. I need help. Show me a conservative politician with truly progressive values who claims to honor the sanctity of life and supports policies that help the profoundly vulnerable in our country. 
8. MINDFULNESS MEDITATION I took the basic six-week mindfulness meditation for stress reduction class when Henry was about two months old and Sophie went on a two year screaming jag. It saved my sanity. I might go days and even weeks without sitting (the practice of meditating), but I have honestly tried to live mindfully ever since. That means recognizing each moment that comes, the bodily sensations it evokes and not judging them. 
9. LITERATURE, POETRY, ART AND BIRD PHOTOGRAPHY I'd be dead in my mind if I didn't surround myself with books and poetry and art and those who love them. My writer friends are probably my closest friends because we know that our salvation is our suffering and what we create from it. Oh, and then there's the bird photographer.
10. SEX Just kidding. Maybe.