4

Dear Ozzy,

No one makes me swear as much as you do. Goddamn it, stop! Did you hear me? Get down! Sshhh! Go to sleep, get back here, you know better than that, it's not funny, don't you dare...god fucking damn it, look at me! 

And when you do.
Your eyes are the most beautiful hazel, your lips red and always wet. Sometimes you curl them in a way that can only be described as a shit-eating grin. Funny how a love letter to a 4 year old could have so many bad words, but this is you, the very best boy who brings out the very worst words. Because goddamn fucking-A, how I love you feels like a well-timed bad word exploding inside my head, my chest, uncontrollably, viscerally, everythingally.

You test me. Poke your fingers at my edges, look at me knowing full well, and sometimes I fail that test. Like lately. We need to break him, I said the other day, only half joking. Like a horse, break his spirit so he behaves, but of course I don't want that. Would not let that happen. You are exactly who you are and exactly as you should be, and I will live my life protecting your spirit, your you-ness, even if that means I hold your hand as you walk across the tops of fences. Because at night when I lie beside you trying to get you to sleep, you turn your head to kiss me with your eyes closed, your cheeks sucked in, lips puckered like a fish. And just as if I were truly underwater, I cannot breathe but also know that there is no need to panic. 

So here we are. Tomorrow when we wake up you will be 4. And just like every morning I will start the day telling myself not to lose it. But goddamn it Oz, you funny, whiny, silly, smart, button-pushing, creative little Mister Man of a boy. If there is one thing I need you to listen to me when I say, it is that I love you. With every expletive you are not allowed to use. Just the way you are.

Happy birthday sweet boy,
Mommy

3--didn't write one last year :( 
2
1
Introducing Ozzy
Right before you were born

And All The King's Horses And All The King's Men

As I write this Zoey is asleep on the couch behind me. You know that feeling when your phone rings and it's the school? That, but I was home. Just a tummy ache, so I drove the 5 minutes to school thankful that I am not yet back at work, 40 minutes across the bridge.

Over the weekend I got the news that a woman who had HSCT in Tel Aviv passed away. She was more disabled than I, maybe older, I'm not sure. That's not very factual but it's as close as we are going to get. During chemo she went into anaphylactic shock which caused multi organ failure. She was in the hospital for a few weeks in Jerusalem, then flown back home to Florida where she was in the hospital for a month or so. Ultimately she ended up with heart, renal and respiratory failure. On Friday her husband informed the HSCT forum that she had died. 

Factual should answer the question why, but it doesn't even try.

But those are the facts that we know. This is the feeling that I have. In some ways I feel like the treatment was too easy for me. Did it work if I was able to ride roller coasters this weekend at my kids' school carnival? The Typhoon, The Tornado, all but bathing myself in Purell but still, I was there. I mean, there is a numb spot on my pointer finger as I type. Just a spot. At the tip. Of my finger. It may always be there. How long has it been there? Did it work? Why am I so lucky to have made it to the other side relatively unscathed while someone else died? Why am I so unlucky to have MS in the first place? Why am I so lucky that my child is asleep on the couch with what may or may not be a made up tummy ache after a weekend eating cotton candy?

Why is a real fucker, a question that never gets answered as it spits out a flippant why not? I don't know. I knew it was a risky treatment, but knowing is nothing really when we're talking about a heart that stops working. 

This morning the cats knocked over my human anatomy model, so while Zoey sleeps I will try to put it back together again. The muscles are easy, but the vascular system, the bones, the see-through bits, those are almost impossible. I am lucky, unlucky, I am lucky again, sung to the tune of Dem Bones, Dem Bones, Dem Dry Bones. (Now hear the word of the Lord.)

For C.Z.

xo,
S

Feel Good Friday For You

I remember the day this happened, the feeling of shared inspiration, the sense that we were all one of the good guys. I walked around with a lump in my throat while smiling silly at anyone I passed. We all did.

I am so proud of my city, of this kid, of humanity. I cannot wait to see this movie and bawl my motherloving eyes out.

#ThanksBatkid

Xoxo to San Francisco and you,
S

Fun Fact: I'm On Medium

Is it weird that I kind of want this Fun Fact to be true? I mean, not really, but a little? So I can blurt it out in lieu of small talk? I don't know, yes. That's fucked up.

I'm fucked up. Anyway, I posted a story over on Medium today. Pretty please come visit me over there.

xo,

S

The Treachery of Images (A Cumulative Tale)

It's just a chair, it's just a chair, it's just a chair...

Ceci n'est pas une chair. Or at least not the chair. No, this is the chair that replaced the chair that I took down to the basement to make room for the desk, the desk at which Ozzy is now sitting. This is the house that Susannah built.

My mom gave us that chair, the other chair. The overstuffed chenille rocking chair née chaise that I sat in while nursing/trying to nurse both my babies, the one that we cuddled in all three at once, read books in, the one that sat in the corner of Zoey's room, then Ozzy's. It now sits in a corner in the basement along with a red scooter that is too small, the couch with the broken back, boxes of photographs and the litter box. 

How can we get rid of that chair? Don't get rid of that chair. Believe it or not, Bryan is more sentimental than I. It's just a chair, I tell him, knowing full well what the basement means. It's just a chair, it's just a chair, it's just a chair...

Ozzy loves to draw. A boy who does not stop thrashing sits still to scribble-talk stories of boats crashing and monsters, dinosaurs, oceans. So when someone offered this hand-me-down desk I took it, loving how the top flips open to hold crayons and paper.

Last week I stained the wood a dark blue and hid decades worth of other peoples' stories with stickers from the surf shop down the street. Ozzy came with me and we sat and watched the older boys skate the ramp until we got hungry and went home. 

Now that the desk is finished, Ozzy says he loves it. Calls it his workspace, tells me to leave (but don't shut the door). From the other side of the house I can hear the scratch and grind of crayon hard, pock.pock.pock. as he dots something, rain or--? He does not know how to draw or do anything without intensity. 

It's just a chair, it's just a desk. A desk that was owned by two brothers from another family before him. It's just a place for a boy to create the world, whole worlds really, worlds enough to stack inside until the top no longer closes. 

This is a desk that is a cumulative tale, not the story of Susannah's house or Ozzy even, but a story of vast, fabled oceans, of life interlinked, of things that get put in the basement and back again, of boys that grow up, of overstuffed chairs all tattered and torn, the mom at once both happy and forlorn. This is the house that we are building.

Hair I Go Again...

Tell me the truth: does this shirt make me look like The Boy In The Striped Pajamas?

Incidentally, if you have not yet seen or read The Boy In The Striped Pajamas, I urge you to do so immediately. Excellent book/movie. Not so good look for une femme d’un certain âge.

Not to mention un certain coif. I have found that many of my go-to looks don't "go" with my new 'do. For instance, my once-beloved skinny camo pants take on a decidedly aggressive air with very short hair. Then there's my sweater with the motorcycle on the front, my Rolling Stones tee, the raglan shirts that I bought in the boys' department. I used to wear these with all the confidence of long hair covering my neck. Don't even get me started on my favorite rainbow striped bikini. Wearing it now I feel as if I am making a statement that I don't intend to make. I mean, I'm cool with that statement. I support and respect that statement. But it's not my statement.

I made a Pinterest board for pixie cuts. Looking at it makes me excited for what is to come in an inch or so until I realize that all my pins are 100lb 25 year olds who probably wouldn't know a nasolabial fold if it smacked them in their angular faces. #Filters4Lyfe

I've decided that my style muse is Jean Seberg sans whatever led to her mysteriously od'ing on barbiturates in Paris. I know she was American, but she's got the insouciant french thing down pat.

I am pretty sure that the pesky space-time continuum does not allow me to be an ingenue anymore, but I strive for what comes next. The wide-eyed pixie after the elasticity around her eyes has gone slack. Hey, it happens.

But seriously. It's not too late. I can still return it. Does that shirt make me look like The Boy In The Striped Pajamas?

xo,
S

What Not To Say: The Short List

This is one of those posts that should start with an apology. Or at the very least, a weighty disclaimer. Because the awkward--oh. The awkward is an Andy Samberg skit played by Michael Cera dry humping Kristen Stewart that you have to watch while sitting next to your parents on the couch. 

I know.

Last week a line of empathy cards (not sympathy cards) made the rounds on the www, and if you haven't seen them yet, they are genius. Created by Emily McDowell, a designer who battled Hodgkin's lymphoma, she says, "The most difficult part of my illness wasn't losing my hair, or being erroneously called 'sir' by Starbucks baristas, or sickness from the chemo. It was the loneliness and isolation I felt when many of my close friends and family members disappeared because they didn't know what to say, or said the absolute wrong thing without realizing it."

Now I am lucky enough that my community rallied around me with more support than I ever knew possible. There has only been one or two people who disappeared because of whatever reason; otherwise, people I didn't even know well are now lifelong friends. If anything, my illness and treatment has turned me into a people-person, and if you know me, then you know that before this I was more of a stay-at-home-eat-baked-goods-and-give-side-eye-person. So while I experienced little loneliness or isolation, I have been collecting my very favorite stories of "people who say the wrong things" because, let's face it--awkward turns positive the more you point at it and laugh.

This is where the disclaimer is crucial. I have been a sayer of wrong things myself. Exhibit A: when my good friend was in the middle of chemo for cancer I offered to get groceries for her. What do you need? I said, Paper towels? Bananas? Bread? Shampoo? The last word hung in the air like a slap. She was bald. And that's just the one I know about. I am sure I have said a thousand other things that meant well but came out crooked.

I also want to say that this post is not directed at you. Whoever you are. Because I guarantee that almost everyone who knows me has said at least one of these things at some point. And I still love you, or at least like you a lot. I can also guarantee that I would probably say one of these things if I were you. But I'm not. I'm me, and from over here these things sound wrong. Even though I know they are said with the best of intention.

So let's do this.

1. When will you know if the treatment worked?
Hm. Um. Let's see. There is a sliding scale of wrong to this question. That is, if you know me very well and we are having an intimate, real conversation in which it wouldn't be a non sequitur for me to ask you about your deepest fear and expect you to honestly answer, then yeah, valid question. But if you don't know me well and this question is posed during small talk, then no. Just no. So when will you know if it worked? Would you ask a cancer patient when she might know if her chemo worked? 

2. Tell me about your disease/treatment/what happened/prognosis/I've-read-your-blog-but-need-more-explanation/I-went-to-high-school-with-you-and-even-though-we-weren't-close-then-and-haven't-talked-in-20-years-I-want-to-hear-the-story-of-your-diagnosis-oh-yeah-say-it-real-slow-and-sexy-like...
I think that because I blog about so much people expect me to be an open book all the time. At dinner parties, on the street, in the parking lot while trying to find quarters in the bottom of my purse. While I know that most questions come from a good place, sometimes it feels as if people think I owe them something, to entertain them with my health. And I don't want to, or at least I only want to on my terms. However! And this is a big however. If people want more information because I can be of help to them or someone they know with MS and they are curious about HSCT, then yes. I am a dog-eared open book with a clear table of contents and a section thick with thank yous. Not only do I owe you something then, but I owe the world if my experience can help.

3. Every time I look at your face I want to cry.
Yes, someone seriously said this to me, and yes, I still laugh about it. The good news is she later apologized. The bad news is she is not the only one to say this. Just this weekend someone else asked me to tell her the story of my sickness and treatment (see above), and then said she didn't want to cry. (Tip: then don't.)

4. So this is why you sometimes walk funny.
Nothing like pointing out that I walk funny to make me feel good about myself, life and the general state of global environmental politics. Granted, this was said by my friend who I offered shampoo to when she was bald, so touché. The important thing is that she is still one of my very favorite people on earth, so please know that if you have ever said one of these things I probably still like you. Except if I didn't before. In which case. Awkward.

No harm, no foul. 
Happy to help.
xo,
S

More

I was cleaning Zoey's room the other day when I saw it--my mom's old cell phone. After my mom died, Zoey asked to keep the phone because it smelled like Grandma Glitter, cigarettes and perfume. Don't look at it, I said to myself, keep moving. I folded a shirt and then said fuck it, picked up the phone, flipped it open, inhaled deeply. The smell is so faint now. It's been a year and a half and I can hardly smell her anymore.

I tried not to write this because I think sometimes/most times/all the time I am too dark. I'm afraid you will all get annoyed with my bleating. But then I think about my mom's refrigerator, all the stupid quote magnets that clung to it. If you ask me what I came into this life to do, I will tell you: I came to live out loud. This is your world--shape it or someone else will. Be Nice or Leave, Thank You. 

My mom loved David Bowie. And doing things you weren't supposed to do.

When someone you love dies people often tell you that they will live on in your memories, your laugh, in the sound of your whistle and the way you turn your head like she did. And that is true, but so is this: when someone you love dies, they keep dying. Over and over in moments. It's been a year and a half and my mom just died yesterday when I realized she will never get to be a very old woman. What would she look like with hair a puff of white? Would she have still worn eyeliner at 80? (Fabulous, and yes.)

Every now and then Zoey brings her up out of the blue. I miss Grandma Glitter, she says, and before I can cross the room to hug her she is sobbing. I do too, I say, because I don't know what else there is. Sometimes it lasts for an entire evening, Zoey hiccup crying, me trying to cheer her up, divert her attention, wondering if I should cry, should not cry, goddamnit why can't I seem to cry? Ozzy doesn't really understand, and even though whenever we cross the Golden Gate Bridge he brings her up, my mom will never know that Ozzy calls people You Frickle Mickle Pants when he is pissed. She would have loved that. Him. Her. Them at 4 and 9 and then. 

And then there is this. I think I put a pause on grieving my mom while I was being diagnosed, researching treatment, raising the money, going to Tel Aviv, getting chemo. It seems that there is a cap to how many horrible things you can focus on at once so I did not think of her much at all. Now that I am hopefully fingers crossed on the other side of something, there she is again. Dying again. Still dead. Each time like the first time when they told me she was gone. 

Maybe this is how it is, how it always will be. A constant shock that I can't call her, hear the soft crackling inhale as she smokes while talking to me on the phone, how we would have talked about how proud we both are of Bruce Jenner, how I will never know if she would have liked that book I just read. As I write this I am wearing her old robe, a singed cigarette hole in the wrist of the sleeve that I poke my thumb through sometimes as if we are holding hands, the sharp melted edges her fingernails lightly tracing my skin, though the bathrobe now smells of Tide and my tea.

Zoey teaching Grandma Glitter how to diaper a one day old Ozzy.

xo,
S

p.s. If you haven't read this post written by my mom about the first time she took mushrooms, check it out and you will see why she is so missed.

I'm Leaking (Are You?)

Question (a serious one): how do you trust your gut if you're pretty sure you have a "leaky gut" and probably shouldn't listen to a thing it says?

Because--you guessed it--I am pretty sure I have a "leaky gut." And no, it is never good to think you have a malady that you can't write, let alone say out loud without using douche quotes. "Leaky gut." The very phrase sounds made up. Like maybe I have Dropsy or Lockjaw. I am not sure what either of those things are except I know they are real, and growing up I was irrationally afraid of Lockjaw ever since I read a book about a girl who had it. Something about a rusty metal bed and how she couldn't move, but when I Googled "lockjaw girl rusty metal bed" a bunch of porn came up, so no. That's not the Lockjaw I read about when I was little.

Anyhoo. If you haven't already heard, "leaky gut" is the new black. As in everything from fatigue to depression and anxiety to autoimmune diseases may be connected to the intestinal wall. In particular to my own health, researchers are studying the connection between inflammation in the gut to progression of MS. I'm telling you, everywhere I look these days I see headlines of mucous membranes and body cavities. While part of me just wants to change my reading material, another part of me likes to be trendy. So if my possibly floppy, loose intestinal wall being too permeable is suddenly 'in,' I will totally leak my gut right down the runway. I mean, I just traveled around the world to reset my immune system. I'm thinking I should maybe go to a holistic nutritionist to run a few tests?

Thoughts? Advice? Over/under on the chances of me ever truly quitting sugar and bread?

In other news (though honestly, I've read so much on "leaky gut" now that I wouldn't be surprised if this was somehow related): I have started wearing ear plugs at night because Bryan snores so freaking loudly that I want to sucker punch him between the hours of 11pm and 6am. Unfortunately, the cats like to play with the foam ear plugs, eat them and then throw them up strategically right were I might step upon first waking, so I have to keep them (the ear plugs, not the cats) locked in my bedside table drawer. Late last night, I was woken up by Ike nibbling gently at my head trying to stealthily steal the plug from right out of my ear. Let me just say that Ike would suck at playing Operation.

Either this has nothing to do with anything and this is a real shit blog post, or it's all connected and we can give this post the holistic stamp of approval. Can you tell which way I'm leaning?

Happy Monday,
S

p.s. There is an even realer possibility that I have used these images before years ago, but I love them, the moment before disaster. Let's pretend it's the first time. For everything. Today.