We Can Do Hard Things, Friday 4/3/20

From off the wide world webs

I don't know about you, Reader, but I find myself cycling through a whole lot of emotions each day beginning at about 5 am and continuing throughout the day, often capped off with a kind of easy dissociation and ending when I go to sleep (always untroubled, this is a gift I know). I woke this morning in a financial panic with apocalyptic scenarios that would make envious any thriller screenwriter, and I realized only after breathing through all of it that the panic comes from privilege -- the privilege of having everything that I need right now. Plus, the sun came up. So there's the FEAR ZONE, THE LEARNING ZONE and THE GROWTH ZONE.

Do you see how much one can grow, even in the darkest hours before dawn?

Today is a beautiful one in southern California. I've taught my students and am now ready for what we used to call "Spring Break." I have no idea what I'll be "doing" next week but somewhere in my tiny little mother mind™ I might sit down and pull out the GDB and get writing.

Oliver told me that during a zoom conference with his boss at the U of A (he works in the bookstore), they learned that the university is operating soon at a massive deficit and that many, many people will be laid off, including faculty. Cue a FEAR response (anger at why would they say these things in a meeting?), but instead I'm going to LEARN, and I'm going to take Oliver along. I recognize that the university, like all businesses and people, is trying to do its best. I ask him whether this was rumor that the boss was spreading or whether there's validity to it. I acknowledge that this whole thing is scary as shit but we can't control this part of it. 

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It's super scary and unnerving, I share with Oliver, but right now, we're fine. We're making sandwiches, and I've got a job. You have an internship lined up for the summer that is still going to happen. We're all going to get through this but not unchanged.

Reader, tell me how you're experiencing fear, learning and growth.

25 Years and a Surprise

Sophie turned 25 years old yesterday. I'm sorry I didn't post about it sooner, but I just couldn't figure out the words. I was going to say what I've said before: time hasn't flown at all, and I've felt every single one of those years.

That picture above is testament to my working philosophy: never set goals and never answer questions like where do you see yourself in 25 years?

Yes, I did make that cake, but I will take no credit for the beautiful young woman that has graced my life and shaped who I am in ways that I have only begun to articulate.

She's never been much of a smiler, but when I sang happy birthday to her in bed yesterday morning, she actually did smile. A slow gentle with a touch of smirk smile. This girl knows absolutely everything, and I am overwhelmed by her strength and beauty.

Guess what else?

Henry is home for spring break! Oliver went to Mexico on his spring break, and I've tried not to imagine what was going on. This morning The Bird Photographer woke up at the crack of dawn to go do his thing and then head to his home behind the Orange Curtain. I was feeling the post-25 years blues, so I asked him in the darkness to tell me something good. He said that he was sure it was going to be a very happy day. I went to work. I taught my magical students and had a lovely lunch with Henry.

He dropped me back off at work, and I continued to teach my magical students and then walked home. Then this happened:

If you can't see old schoolmarm acting dumbfounded, go to my Instagram account and check it out.

Reader, Oliver never went to Cabo! He surprised me and came home! I'm such a dope that I had absolutely no idea even though everyone else apparently did. I feel like the luckiest woman in the world to have her two beautiful sons at home for a week.

Weird Empty Nestish Stuff (plus a poem)

The night before the Empty Nest, as photographed by Leonardo da Vinci 

It's official. Sophie and I have an empty nest. I drove Henry to the airport last Thursday, and he took a flight to Italy where he'll be spending the fall semester. Poor boy. Afterward I kept my shit together and taught my classes for the second day, but when I got home I had what I am now thinking, in retrospect, was a collapse. Honestly, I know I am dramatic at times and prone to hyperbole, but I tell you this, Reader. Having both boys gone flown the coop off to college off to Italy beginning new lives as young men you know the rest was obliterating. It's honestly felt, at times, like something ripped from me and that something is the whole of it. I feel slightly embarrassed writing this out because Henry and Oliver are strappingly healthy and alive and happy and hell, they profess their love for me so I have nothing absolutely to complain about but let's go back to the ripping sensation. Yeah. I imploded on Thursday night, I think, and if it weren't for the Bird Photographer (interesting and ironic and synchronous, no?) -- well -- thank you, Carl. I'll add that Sophie is with me, that we both have an empty nest. The atmosphere around these parts is mighty different, and we'll get used to it. Until the getting used to it, though, it's plain weird and takes my breath away. I ate a tomato sandwich tonight with spinach and mayo on some whole grain bread. I put on a pair of compression socks (my GOD!) and organized all the paperwork for my four classes of high school girls. I opened the dishwasher and it was EMPTY. There's toilet paper in the holder in the bathroom, and the towels are folded on the rack and dry. It's very, very quiet.


Here's a poem my friend Andrea sent me:


The House Was Quiet And The World Was Calm

The house was quiet and the world was calm.
The reader became the book; and summer night

Was like the conscious being of the book.
The house was quiet and the world was calm.

The words were spoken as if there was no book,
Except that the reader leaned above the page,

Wanted to lean, wanted much most to be
The scholar to whom his book is true, to whom

The summer night is like a perfection of thought.
The house was quiet because it had to be.

The quiet was part of the meaning, part of the mind:
The access of perfection to the page.

And the world was calm. The truth in a calm world,
In which there is no other meaning, itself

Is calm, itself is summer and night, itself
Is the reader leaning late and reading there.

Wallace Stevens

Birds and Bees

 Yesterday I went to a seminar titled "Empty Nest Syndrome" and learned approximately nothing, but it felt good to sit in a big room with a bunch of goofy parents steeling ourselves for the big good-bye. I don't need anyone telling me that it's all good and right and the way things are supposed to go. I know all that. I haven't fully processed or articulated what it's like to really never have an "empty nest" in the narrowest definition of the term, given my life as a primary caregiver to my beloved Sophie. Life goes on in a sort of eternal present for me and Sophie, even as my sons move forward, and I don't mean this in a bad or heavy kind of way. I will try at some point to write about it, to parse out the peculiarity of maintaining a nest even as my own impulse is to fly away to a new part of life. As they say. I texted a fellow caregiver during the seminar that I was going to drop a bomb on the person leading it by asking whether taking up a new hobby or planning a trip would help the "Never an Empty Nest Syndrome," and my friend texted back, Do it, and I smiled and looked up and let my mind drift to all the years, all the years. I am so damn proud of Oliver, of all he's accomplished and the young man he's become. I'm sad in an existential way that my job raising him is largely over even as I know in my bones that mothering is so deeply embedded, I might as well be one of those orca matriarchs whose sons never leave her. I'm going to tell you a story about something he said the other day in response to us witnessing a terrible motorcycle accident on our drive from Los Angeles to Tucson. Oliver was driving, and I was reading when he yelled out and grabbed me and I looked up to see a guy flipping over and over and a bike in the air and the guy rolling on the road and then we were past and pulled over and I was calling 911 and then Oliver pulled back out on the highway and we were on our way our hearts pumping and both of us exclaiming and repeating over and over what we'd seen and that terrible rush in the body for many minutes before we quieted. You know what's really weird, Mom? Oliver asked, and I said, What? and Oliver said, I noticed that guy a while back on his bike and he had a flag or something on his jacket and I thought he was probably a stupid Trump supporter or gun guy or just an asshole on a bike, but when he went flying through the air,  I saw his shirt go up his back and it was ripped up, his back was all red and I felt bad for him and then I thought that everything in the world is going to be okay because of that, that we feel bad for and care about people, about life. It's about love and that kind of thing.

P.S. Lest you believe my son to have reached some lofty place of magnanimity and compassion, led there by a mother more bodhisattva than human, I'll confess that we decided we wouldn't feel the same way if it'd been Dear Leader who'd been on that motorcycle.

The view from Oliver's penthouse dorm room.

#Imnotcrying

I'm up too late, but I've been playing around with this post in my head all day, wondering whether and if I'd write it and how. Tomorrow is the big day -- I'm driving with Oliver to Tucson and dropping him off at the University of Arizona. I'm not exactly dropping him off but will, of course, be helping him to move into his dorm and get settled and then perhaps I'll leave his dorm and give him a casual hug and a kiss and go straight to a realtor's office and rent myself an apartment nearby and WAIT! I don't want to live in Arizona because it's too far from the ocean, but I don't want my baby to leave home and yes, I'm excited for him, and he's ready for all of it and it's the way of the world and you have to let them fly and yeah, yeah, yeah, whatever.

I am sad.

 I made the three of them pose together today for pictures. How did the entire summer go by without me taking a single picture of them all together?

WHAT THE HELL HAPPENED TO THE TIME?

It's all good, right?

It's all good.

It's This Kid's 21st Birthday

A lot of you have been around, reading the old blog for over a decade, so this may come as a surprise that my Henry is 21 years old today! He tells me that he went out to lunch with his gorgeous Annika and had his first legal drink. He also brought home a bottle of gin so that we could make Negronis before we go out to dinner tonight to celebrate. Lest you think alcohol is all we're doing today, he also announced that he'll be heading to the nearest cannabis dispensary.

Just kidding.

WHO DO YOU THINK I AM?

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I've said it each year, and I'll say it again: Henry has been the light of my life since the moment the doctor pulled all ten pounds of him out of me. He is sweet and smart and beautiful, inside and out, and I love him.

Happy Birthday, Henry!

Super Nose

Guess what's in the bag?

My ex-husband once told me that he thought I was a super-taster or had a super-nose (he's a chef), but my kids always mock me when I ask, what's that smell? They think I'm prone to exaggeration in addition to being, possibly, the most annoying human on the planet. I don't want to make this post one of those kid-basher ones, filled with the cliches of teenagers and the insufferable arrogance of young adults (I am perfectly aware of my own insufferable young adulthood but shhhhhhh, don't tell my parents). I don't want to badmouth The Brothers because they are divine in many respects, but damn if they haven't been helpful or even supportive in the rat saga of this past week. Neither agreed to handle any trapped rats (my feminism comes to a screeching halt when it comes to dead rats in traps) and last Saturday, after the traps were set and lined up behind the stove and the microwave stand in the kitchen, and we all heard the most horrific clatter and then silence, no one stepped up to check it out. Well, Henry did actually come out of his room with a bat and Carl did shine his phone light behind the stove, but the only thing we saw was one of what we thought were five (this is a crucial hint) traps a little skewed. No rats, though, and everyone carried on their days and nights as if nothing was the matter, as if roof rats, flying through trees and into the attic and jumping from vents onto pot racks over stoves and nibbling beautiful pears and cherries and making their way into the dining room to feast on the bits and pieces of food that fall from the wheelchair and then making their way back to their home or nests in the Christmas decorations and vintage toys and suitcases and skittering all about were NO BIG DEAL, were a problem that would magically take care of itself because that's the way things went in their home with their mother lying about all day.










The days went by.












I think I smelled something a couple of days ago but was met with the usual derision and mockery. I don't smell anything, they said and then rolled their eyes or did what boys do when my back is turned. I'm annoying -- it's annoying -- when I twitch my nose and sniff.  Today was the day that The Rat Man was coming back to seal all the holes in the house where the rats were coming in and out. I planned my day around this event because The Brothers were busy. I imagine the gears in their adorable heads clicking, clicking, pondering. What does she do all day, anyway? Does she even exist outside of my supreme sphere? The Rat Man arrived on time, bless him, and began his work. He is a peculiar guy in the way that certain occupations command peculiar, but Reader, I love him. When I told him about the clattering episode and asked him to shine his light behind the stove, he complied and then I swear I saw his nose twitch and he said, I smell rat. I practically shouted, I SMELL SOMETHING, TOO! and then thought about jumping up and down in excitement (not about the rat but because having someone actually confirm my suspicions which means affirm my skills, my extremely honed intuitive senses, my super-nose, my infallibility, etc. etc. is everything in these late middle-aged times) but instead said nervously, Do you see that fifth trap a bit at a distance from the other four? And he got down on his knees and claimed that the smell was urine and then he said, no, it's rat, and where's the sixth tra -- and before he got out the p and just as I said, SIX? I thought there were only FIVE? he said, I got him! Do you have a plastic bag? and I ran and got him a plastic garbage bag and reverently shook it out and handed it to him and left the room.

We have one rat bagged and every little hole in this hundred year old house screened up and against them. I texted The Brothers and Carl the good news and included a bit of my own exultation over smelling something funny. No one has acknowledged this, of course, but Henry did text me back:

All My Chicks Are Home

Surround me, confound me
with your boundless love --

Tuesday Night Grumble and Gratitude

I was going to just grumble grumble grumble. Grumble about that silly movie Green Room winning the Oscar for Best Picture (see my very early dis of it here), grumble about the Bird Photographer leaving town for a week, grumble about all the dumb shit and people we have to put up with who are supposed to be running the country, grumble about always feeling like I need to lose some pounds but knowing that I'll probably never lose some pounds, grumble about doing my taxes and figuring out how to pay for not one but two children in college, grumble about still not having a good doctor to take Sophie to for general issues, grumble about the state of my house, how it's overflowing with books unread and the stack of papers that make up my manuscript that will, perhaps never get written. Grumble, grumble, grumble. The Catholic Church, Paul Manafort, The Methodist Church, sex trafficking, the mediocrity of culture, obscenely rich people -- the grumbles are rolling.

You wanted to hear that, right?

Here's the thing. Despite that silly movie winning, there were a host of truly beautiful, mind-blowing films that should have won it, and I'm grateful for having seen those movies and beyond grateful that there are artists in the world with vision and grace and bravery doing their work. Despite the Bird Photographer leaving me to go shoot birds (with a camera not a gun) in another state, I'm grateful to be partnered with such an extraordinarily talented and sweet man who is doing what he loves best, observing beauty, making beauty. Despite the state of Terrible America, I am grateful for investigative reporters that continue doing their work informing us, digging deep, and I'm grateful to have a brain that is willing to dig deep and wrap itself round difficult things and parse them out. Despite needing and wanting to lose weight, to look like I did twenty-five years ago, I'm grateful to have this strong body that on its best days can lift a 75 pound woman, can walk up a hill to an overlook and gaze out on a shining city with snow-capped mountains and blue skies behind and above it. This body can love, and I'm grateful for that, too. Despite the horror of going through my medical expenses and all the other paperwork I need to do, including just facing the numbers, the dismal numbers, I'm grateful that I finally have a great job that I love. Despite the existential threat to my sanity that thinking about BOTH sons off and away from me in the fall, I am so grateful that they are such fantastic beings with their whole lives ahead of them. Plus, they're damn cute. Despite the tedium of finding a doctor for Sophie and the grappling with CTSS (chronic traumatic stress syndrome), I am grateful that she is doing well on her current regimen of CBD and IVIG, and that she has such a terrific aide at her adult day program. In fact, I think you need to see a recent photo of  the girl:

 Here she is contemplating Art.

And here she is contemplating the Bird Photographer:

Despite the cluttered house, the books to be read and the books to write, I am grateful to be surrounded by all of it, all of it, to have so much beauty in my life, so much love, so much for which to be grateful.

The end.

A Show About Humanity with Two Guys In Charge

Have ya'll been listening to Jason Lehmbeck's and my podcast? I sure hope you are, but if you're not, you should start today because two of the finest young men on the planet had a discussion with us about what it's like being a sibling and growing up in a family with a child who is medically complex or who has special needs. Confession: it's getting more and more difficult for me to figure out how to write a descriptor -- how to describe my daughter in language that is clear and factual and that doesn't further stigmatize her or others like her. Special needs, medically complex, disabled, differently abled, people first, etc. etc. ad nauseum in these -- what should I can them? -- fraught times.

Anyway, my son Henry and his roommate Toby spoke on Who Lives Like This?! about their lives growing up in families with one or more children with disabilities. They also talked about their feelings, their friendship, their futures and their hopes. They shared their wisdom and experience. I think they will open your minds and break open your hearts.

Here's the link to the show. Please do us a favor and share it far and wide. We hope to continue to build a community, and this show is not just for those affected by disability or medical issues or caregiving. Dare I say it's a show about humanity?

Who Lives Like This?!

I've run away and found my dream house

Who knew that it would be in Spokane, Washington?

My new home is named Gilda, which happens to be my beautiful, now-deceased aunt's name. She gave me a copy of The Hobbit when I was seven years old and made my first holy communion, which I promptly read and -- well -- you know the rest of my history of reading. I tell you this because I have always loved the idea of hobbit residences, small cosy cottages, and this is exactly my dream house.

In all honesty, I am up in Spokane helping to move Henry into his new dorm room. I didn't think he wanted me to come up with him this year, but when I asked him what day he needed a plane ticket and he said, Aren't you coming with me? and I said, Oh, do you want me to come with you? and he said, Yes! I want you to help me and also meet my roommate! and I said, Well, I guess. Ha ha ha ha ha. Do you want to?

So here we are. Unlike Dream House Gilda, Henry's new dorm room is named The Ugliest Dorm Room in the Disunited States of America.

Notice the blue PLASTIC curtains. I won't share the picture of the communal bathroom out in the hallway. I snuck inside to use it and was barely able to sit down on the toilet without my knees hitting the door. I was literally about one inch from reading the Potty Talk Newspaper that was taped on the door, educating me about social justice issues. Today we will be shaping up the ship, visiting Target. I'll post an "after" shot, but in the meantime, know that the two guys living there will lend it a degree of beauty that it might never have seen.

Fun fact: Henry's roommate has several siblings with special needs and is, according to Henry, the nicest person he's ever met. 

That's either completely wild and random or, there are no accidents, as my friend Carrie says.

We Will All Take Care of Us

A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home.  Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.

Read more and get the link to the podcast here

It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?

Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.

Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.

What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.

You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.

Parenting, No. 785

I went to visit Henry this afternoon at his new job. He's a server at a funky little place in Venice. Maybe I shouldn't use the word funky anymore since very recently, like yesterday, Oliver told me that it was embarrassing. Maybe he didn't use the word embarrassing, but he repeated the word funky in a voice that I guess is mine, at least the voice that both sons use when they imitate me, and while I imagine there's fondness in the teasing, it still takes me by surprise that I'm considered painfully uncool and old. Both brothers have jobs this summer (Oliver actually works nearly full-time all year round, recently opened a Charles Schwab trading account and has bought stocks -- no joke), and I'm very proud of them. It's been a long time since I've included them on the old blog, and just now I was looking for past posts in a kind of nostalgic way, and boy -- some of those posts were damn funny. I sat down at the bar of this little restaurant where Henry works, next to a younger woman who was drinking a glass of wine and eating a salad. Since I'm the chattiest person on the planet and the proudest, most embarrassing mother, I introduced myself to the woman and told her that Henry was my son. She told me that she had a four year old son, and that he was in a challenging stage. I told her that I remember well those challenging stages, but I found those times to be more physically challenging and the teenaged and young adult years more emotionally challenging. I didn't tell her this story, but Reader, I 'll tell you. Just the other night, we were sitting at the table eating dinner -- takeout Vietnamese because making dinner in the summer is just not my thing -- and the usual conversation between The Brothers began, and this entailed arguing about whether LeBron James or Michael Jordan was the greatest basketball player of all time and then something about the baseball player Mike Trout and Teslas and Elon Musk and then you're an idiot and you're an asshole and you don't know what you're talking about, and just when I was wishing that one day we would have a conversation about -- let's say -- the greatest living poet or how much better a film-maker Fellini is than Tarantino, Sophie had a large seizure that I just know was a result of the anger in the air and maybe even how boring her brothers' arguments can be (Sophie and I are the same about these things, I am certain, but she seizes instead of dying a little inside at the general clusterfuckery). I probably said as much, because now that they're 17 and nearly 20, I don't bite my tongue as often as I might have when they were younger. Enough is enough.

But here's the thing. Those boys jumped up and into action helping me to help Sophie, and I realized that I am, perhaps, the luckiest mother in the world.

The Tiny Little Mother MInd™ and the FDA and Epidiolex

Today, the FDA announced its approval of GW Pharmaceuticals' Epidiolex, a cannabis-based medicine for epilepsy. As I've written countless times here on this blog, I do not begrudge those who want to try this concoction a fair chance to try it. If it works, fantastic. If it doesn't, you know where to go and what to do. What is that? You will probably need to jiggle around your CBD and add THC or one or more of the other cannabinoids. You will embark on a twisty path to healing. I believe this with all of my heart, but it's not a religion. It's fact and science and experience-based.

The reason the tiny little mother mind™ is writing this update is because of the following announcement by the FDA that accompanied their approval:

FDA is deeply concerned about the proliferation of unapproved CBD drug products marketed using unproven medical claims to diagnose, cure, mitigate, treat or prevent serious conditions and we’ll continue to take action against such products.

Cue the revolution. That's right. If the FDA or Big Pharma takes away our freedom to make, use, buy or otherwise give our cannabis medicine to our children or ourselves, there will be a revolution.

Epidiolex will cost between $2,000-$6,000 a month. If you have any experience with manufacturers and insurance companies and how drugs are priced, go figure that shit out. Contemplate that. Read my post from a few weeks ago where I discuss the difference between Epidiolex and the cannabis meds that many of us currently use.

My tiny little mother mind™has said it before over the five years that I and my compadres have been doing this, that there's a swimming pool here and plenty of lanes. Initially, we told the docs and anyone who would listen that they should get on the train because it was leaving the station. We were mocked and humiliated -- literally -- but we didn't give a flying foo and proceeded to save each other's children. We were told that we couldn't discuss cannabis medicine with our neurologists. We were reported to Child's Protective Services. We were obstructed over and over. That did not stop us.

Now, I'm telling you that Big Pharma should use their lane and not infringe on ours or take over the entire pool. 

I mean it.













*This has been a Public Service Announcement

The Grit and Grace of Caregiving

My friend and fellow caregiver, Jason Lehmbeck, and I have launched our passion project, a podcast about and for caregivers of children and young adults with special healthcare needs and disabilities. It's called WhoTF Lives Like This?! and is available anywhere you listen to podcasts. We've been working on this for more than six months, and I am just so excited to tell you about it. We'll be interviewing the most amazing people who do the most amazing things with their lives -- both publicly and privately. We'll be talking to men and women who care for their children with special healthcare needs and disabilities, to siblings and to those who support us -- the doctors, educators, therapists, etc. working to help and make our lives and the lives of our children better.

I hope you'll subscribe to the podcast, check in regularly at the website to learn about the guests, interact with us on our Facebook page and in the comment section or otherwise get in touch with your suggestions and ideas. If you'd like to be a guest, you know where to find me!

You can listen to the teaser which gives you a good idea of what we'll be doing on the podcast, and we've also launched the first episode where Jason and I interview one another in much the same format that we will be using going forward.

Please help us to share this resource with all those who might be interested. This is a podcast for everyone. While the podcast pays particular attention to the lives of caregivers, their grit and grace is relevant to all human beings, and just like we have found, our work with and love for these most vulnerable of our fellow humans will expand your own heart and view of the world.

You can access the podcast at our website HERE.

Please subscribe! Leave a review, too! Thank you!

Valentine

Last night we had to unexpectedly put our beloved goofy dog Valentine to sleep. The night before last, I was up most of the night with her, but she wasn't in pain -- just acting weird and restless. Early Friday morning, I had to take Henry to get his wisdom teeth removed, and when we got home in the afternoon, Valentine was still acting weird, and her stomach was distended. I took her to the vet in the early evening and learned that her stomach had twisted or turned or distended, that surgery might be the only option with little guarantee that she'd make it through. It was so shocking and fast. I called Oliver, and he came over to the vet's office to be with her. She was really Oliver's dog. He was barely three years old when we got her.

We are so very sad.

We got Valentine as a puppy when she was six months old. She was fourteen in April and lived a long, extremely healthy life. She might have been the happiest, goofiest dog in the universe. We called her a love whore. Everyone who met her would say, "Valentine really loves me!" We didn't have the heart to tell them that she really loved everyone. She loved the Oliver the most, though.

Not much more to say than that. Or this:

Benignity and Trickery

I'm going to tell you about what might happen to siblings of kids with complex medical needs. No matter how conscious you are about giving them equal time, things slip through the cracks, stuff is blown off, "little stuff" is overlooked. Oliver complained about pain in his finger for a year. I acknowledged it, but I also blew it off. I blamed it on diet or inflammation. You need to stop eating junk, I might have said. How bad could it be? Both Oliver and his brother Henry are strong in every way. They are strong and sensitive. They are honest and funny as hell. Like their sister, except they haven't gotten as much attention. It turned out that Oliver has an aneurysmal bone cyst. Benign but tricky. Today he had a second surgery to remove it as the one in December didn't work. The tumor came back, began eating into his bone. Hopefully, today's intervention will last. I sat by the bedside in the recovery room for hours, running my hand through his hair, watching my nearly grown boy sleep off the drugs they gave him. He made jokes in his sleep, smoothed all my rough edges worn thin by time in hospitals those weird hours ticking by. Precious child. Brave children.

I'll be catching shit for the "inflammation" and "too much sugar" talk -- but that's okay. We all need to be humbled and set straight.

Power to the siblings.

The Alchemy of Sophie and Me (with an update)

Lunch in the neighborhood with my girl today

Sophie's doing pretty well.

I've been tinkering with her cannabis medicine under the guidance of Dr. Bonni Goldstein. I've also been reducing the Onfi.  She had a bad month, beginning with that red full moon thing and stretching on for weeks. A bad month means a bunch of tonic clonic seizures, lots of clamminess and drooling and difficulty walking and swallowing. It's hideous, really, and each time it happens, I have to go through this sort of willed calm and resignation. I fear her death. I'm nothing but brutal and honest, you know.  At some point during the third week of this, Sophie had a flurry of seizures, and Dr. Bonni suggested that I double up her dose of CBD. Really? I asked. I trust this woman for a myriad of reasons, but mostly because she's been absolutely spot on when it comes to dosing Sophie.

I doubled the dose of CBD  and kept the CBDa the same. The combination stopped the seizures cold. She hasn't had a seizure since. The side effect of the double dose is fatigue and weakness. I wondered, too, if Sophie wasn't even a tiny bit stoned. I don't like the weakness and fatigue, but I don't care about the high.  I asked Dr. Bonni whether I should reduce the dose, but she felt that I should keep her on it for another few days, so I did. I also reduced the Onfi again by another .5 ml. Here's the thing. The cannabis medicine interacts with Onfi and perhaps jacks up the level of Onfi, making her very tired and weak. We need to get her off the Onfi, though, and let the cannabis do the work. She was so tired over the weekend, that I decided to hold off on the cannabis medicine on Sunday night and all day Monday, even as I reduced the Onfi.

I did this with my guts and experience. I'm not sure how to tell you to do what I do other than to emphasize how powerful one's instincts are when you've been doing what I do for so many years. Trusting your instincts is always a good idea, and it's an especially good idea when you combine it with experience. Emotion doesn't play a very big part in any of this, to tell you the truth. It's working on the edges of nerves, if that makes sense, and I've gotten pretty good at it.

Sophie's now on a much bigger dose of cannabis and a much lower dose of Onfi. She's had nearly two weeks of being seizure free. I gave her a couple of days without cannabis to see if she might revive from the fatigue (she did) and added it back in today because it felt like the right thing to do. That's the intuition part, a very powerful nearly Shamanic feeling that I occasionally have and that I have learned to trust. It doesn't take a scientist to carefully figure out that since she's never seizure free on Onfi, especially at high doses, but seizure free on lower Onfi and higher cannabis, it's very likely that it's the cannabis doing the anti-epileptic work.

I'm going to continue weaning her from the Onfi and tinkering with the cannabis. Sophie's keeping me on my toes quite literally --



UPDATE: I edited a bit here because of some folks' questions about the products that Sophie is using. She has used a combination of Myriam's Hope or Canna-Kids, CW Everyday and THCa in various dosages for years. We have found that Sophie needs a bit of THC for better seizure control. Charlotte's Web has worked beautifully for Sophie, but it has a much higher CBD/THC ratio, so we supplement with products that have more THC. Right now, we're leaving it out of her daily regime, but that's probably only for a short time. It's important for readers to know that cannabis medicine is highly individualized and that what works for Sophie might not work for everyone. In addition to trusting my instincts, I trust consultation with my cannabis medicine doctor and the folks at Realm of Caring (who've guided many of us for many years). 

Don’t Give Up

I have a feeling that things are going to change. Between the kids themselves stepping up and speaking clearly and demanding accountability, and the growing power of resistance groups organizing with renewed energy, we’re going to change things. Women’s voices, raised in anger and in force (not violence) will propel this change. We will make the opposition irrelevant.  I have a feeling. So don’t give up.

Take Away the Oceans and the Stars

Guadalupe Valley, Mexico
Bruma Winery

But let’s keep our sympathies where they belong — with the powerful and the armed. With those who feel threatened in the face of the most toothless efforts to hold back the bloodshed and those who believe scary monster stories about their guns being taken away. Let’s face it, it would be easier to take away the ocean or the stars.

from Please Don't Get Murdered at School Today, by Kimberly Harrington 

Yesterday, I engaged in a long and sometimes over-wrought yet reasonable discussion with a gun enthusiast that went to high school with me in the last century. He gave me the usual arguments -- the Second Amendment, his rights, his love of hunting, his responsible gun use, etc. etc. ad nauseum. Love of nature, the eradication of deer pests. He put words in my mouth (my tiny little mother mind mouth™), insisted that I didn't understand hunting because I was a coastal elite.  I thought hmmm in my coastal elite way and stayed polite with an edge of defensiveness. He ranted a bit about sanctuary cities, said he knew a family who had lost a relative to a murderous illegal immigrant. He digressed, as did I. He was sick to death of his rights being threatened. I pointed out that he was "winning," essentially -- that he had the backing of federal law, however loosely interpreted, as well as the efforts of the most powerful lobby the country has ever known. I asked him how many guns he'd need to hunt deer for food, keep deer contained (this being an example of the responsible use of guns) and to protect his family.

He answered, 11, for a family of five. Shotguns were in there, as were rifles, I think, and a couple of pistols. I questioned his fear. He said he feared very little and neither should you.

I felt sick to death the rest of the evening and deleted the conversation.






Today, when I expressed my horror at what happened in Florida, when I gave in and said, Fuck guns, melt them all down, get rid of them, I was told to go get sterilized by another person, someone whom I don't know. I clicked on his Facebook page and saw that he was an older white man, somewhat puffy, surrounded by children. God was mentioned several times on his public page, as were fostering children, and sobriety was a common theme. He frequently used the word pussy in a derogatory way.

Sigh.

Aside from the growing piles of dead children, what breaks my heart is my own children's cynicism regarding these school shootings. Perhaps it's a way to defuse their own emotions, to dissociate from their own terror and confusion that this is where we are as a country. Both of my sons state that it'll never change, that there's no point to any of it, that there will always be guns and always be shootings and death and blood and people who justify guns and shootings and death and blood as part of being free.

Today at a Florida high school