Tuesday, December 18, 2012

I am Dylan Hockley's Mother

His small & perfect life ended in the arms of his beloved school aide under a hail of bullets. His aide Annne Marie Murphy is a name I will keep close in my mind right next to Dylan's and right next to the name of my own son, Lincoln.

When I heard about what was happening in Newtown, my mind raced to the exit plans I would will upon my children if they were ever in the same hellish space. Penelope. Penelope is small and quick; the girl can move! I imagined her taking flight out of a window, contorting into the tiniest of cabinets. I imagined her alive. Then Ruby, strong as steel and a mind full of clarity. I could picture her jedi-mind tricking any assailant into giving up their seige or better yet: Taking the bastard down with her big, sturdy hands. But Lincoln. Oh, god, my baby boy.

We have a family joke that if the zombies come, we'd have to carry Lincoln because he's just not that fast. It's also true that he'd jump into a shark tank so he could touch his beloved beasts. He'd walk through a lion's cage to pet the beautiful feline.

Lincoln has no fear, no preconceived notions of hate and terror. He is peace, beauty & love. His disability doesn't provide for quick reactions and decision making. He isn't wired to take flight or fight in an instant like typical people are. Like all of our children do, Lincoln needs protection and then some. He needs protection to the nth degree.

Putting our children out into the world to attend school, take gymnastics lessons, go to the mall with friends, see a movie, go on a field trip, to experience life without us in any way can be a terrifying proposition. But we do it and we get used to it and they love it and they grow and move and change and become better, wiser people because of it.

Putting our special needs children out into the world is a leap of faith that is an acutely different affair. The trust, the patience, the worry, the angst is of a wholly different flavor.

But so often, magic happens and our special babies get phenomenal facilities, teachers and aides to shepherd them along with love and grace and gratitude for being able to do the job of teaching and caring for a child with special needs.

Dylan Hockley's parents made great choices for their son and they won the jackpot with his aide Anne Marie.

I can picture the scene (though I want to scrub it clean from my mind). A sweet boy, so unsure of what was happening, not able to react. I see my son. I see my son cradled in the arms of his guardian, having loving and caring words breathed into his ear, his last moments a little less horrific.

I will think of you often, Dylan and I will hold every caregiver of my son to the standard set by your precious Anne Marie.

Sunday, November 11, 2012

State of Affairs

The female body is fascinating. It's magical. It's horny.

When I was in my twenties, the itch to screw was just that: pure sensation-seeking. In my thirties it was chemically linked to my urge to baby-make and now in my forties it's back to HORN DOG CITY.

Cool, right? Notsomuch when you're stuck at work (looking at vaginas all day and caring for the products of *other* people's sexual escapades) and your hot husband is another state. For another week.

Help me. I feel like a teenaged boy with a boner for his Social Studies teacher.

Sunday, October 21, 2012

Musings on the Elf

When Penelope was a wee babe, she was mean. And funny, and strange and whip-smart and she clung to me like I was the last fence post to be swept up in the tornado.

She was born "sunny side up" (just like her sister) with her rather short umbilical cord wrapped tightly around her neck. As my genius mid-wife guided her out safely, she said: "Hmmm. A Cancer child. They like to stay in their shells."

I have thought about those words more in these past few months than ever before. She will fly, my PJ. I'm sure of it.

Tuesday, October 16, 2012

And it's not even my birthday

When I got home last night from "The Most Excellent Day Ever", Link greeted me with his newly perfected refrain of "Mom! Mom! Mommy! MUMMY! MUMMY!" As I snuggled him up into my arms, he told me a story about what he did the other day.

Let me repeat that: Lincoln Anthony Sgueglia told his mother a story. He used 3 words, and one sign. And he recounted something that happened to him! In the past!

I didn't cry (though I was absolutely incredulous); I just looked at him, really, really looked into his eyes and asked him if he just did what I thought he just did. Surprise, surprise: he didn't answer me.

Instead he proceeded to name all of the things in the room that he could: Wine! Roni! Bapple! Alex! Mummy! Beeee! Book!  And then he hit the deck and started rolling around on the floor asking me (in sign) to tickle him.



My kid is KILLER.

Oh! I suppose you want to know what he said! Ha! Here it goes:

"Drive. Cows, two! Mooooo!"

(Apparently, on their way to a Fall festival over the weekend at the camp my girls' go to, they passed some cows in a field. Lincoln was impressed)

Monday, October 15, 2012

Rodents are people, too

Today, the gerbil running in my mind is kind. It's frolicking on a wheel made of gold thread and daisy petals. It smiles at me every once in a while to let me know that everything is going to be ok.

It wasn't so sweet yesterday. Or the day before that. And it might bust out its barbed wire  ring and sneer at me later on.

This thing I chase (me and my fickle gerbil), has been just at the tip of my horizon for as long as I remember remembering. And over the last few days a phrase has flitted across my minds-eye, popped into thoughts. I've seen it scratched into the sandwich board around my gerbil's tiny neck and today this phrase is starting to fit, so I'm going to say it out loud: A Genuine Life.

That is what I have been stalking and hunting my whole life: A Genuine Life.

I want to feel real. I don't just want to do real, I want to feel  real, genuine. I want to take each step knowing that even if it's the wrong move, that I didn't make a mistake. That even if that's not the way I'm supposed to go, that I'm still not lost.

Since I was a very young girl I've been worried about the How's and Why's of my choices. Do I really like chicken nuggets? Or am I just supposed to? Do I really want to wear culottes on my first day of 6th Grade? Or is that just what I think everyone else will be wearing? And as I've gotten older, my choices, decisions more crucial, the worrying has gotten worse. And worse and worse and worse.

Why? How? I crave confidence. I lust after it. And no matter how often I present that very thing to the world at large, the tiny inner world I alone occupy doesn't believe it for a second. I'm sure this is why I'm so tired all the time; this constant picking and choosing and worrying...

Another day and another costume change for my constant rodent companion. Today she's wearing black eyeliner and running on a metal-studded rubber tread. Today she's tough and nasty. And I'm not sure she's on my side.

I have been working for a long time now to peel off this sticky layer of malcontent; a yucky film that I've been assured and reassured isn't real, isn't me. That it is something I superimposed a long time ago to protect myself but that I don't need it anymore and keeping it around is simply keeping me down, keeping me from seeing me and from realizing My Genuine Life.


So. I keep trying to write this post and I keep not getting it right. Ironic, isn't it? It's the crux of my anxiety. The recipe I can't get right. The instructions I can't follow. The pattern I sew *exactly* backwards.

I know I'm not alone in this. This wanting to be real and true. And if I can figure it out, I can write about it and maybe, maybe someone else can figure it out, too.

And just because I know you're wondering: Today, Madame Gerbil is outfitted in the most sublime silk charmeuse jumpsuit. She's got bedazzled Chuck T's on her paws and her iPod is blasting No Doubt while she skips along her peacock feathered wheel.

The day was good.

Tuesday, October 9, 2012

COTA 2012.

All day she was so amazing, so strong. All day I saw her talking to kids she didn't know, had no context for. All day I saw her running, watching, wanting, getting. My Penelope is impossibly small. I've said it before and I'll say it again: She is the littlest elf. The smallest girl in the room and all day I would catch glimpses of her darting in and out of tents, up and down playground slides. She yelped and smiled and laughed and at times, put on a damn good show.

"Gimme a dollar, mum. Let me borrow one." I heard it a thousand times and a thousand times I handed over the buck so unbelievably happy she was so independent! Her magical face and gangly limbs moved a million miles an hour and had more unadulterated fun than I had ever seen her have in one day.

Then she fell in the mud puddle. I wasn't there but she was in the best of hands.... still, the tension pulled taut like a guide wire and I felt the cracks begin to show themselves in her most magical of days.

As she shook and cried and stayed safe in my dear friend's arms, I RAN to the car to grab a towel (YES! I HAD A FRIGGIN TOWEL IN THE CAR!) and a change of clothes. I ran so fast. Oh my god did I run fast.

And she was OK again. I mean, she was really OK. The moment was most certainly not awesome for her, but she recovered. She dried (literally) off her wings and resumed flight. I kept flashing back to our trip to Niagara Falls and I could not believe this was the same girl.

I was light. I was happy. I realize now just how much power my babies have over me. Their joy is everything, their pain is infinite.

And then I heard it. It was the end of the day, the last act was on stage and I was.. I don't even remember who I was with! I just remember hearing my name being said by the MC of the day's festivities. "Michele OBrien. We have Penelope. She's here digging Rhett Miller and she wants you to join her."

At once all of my limbs were moving forward. I'm sure I looked like Scooby Doo scrambling after Shaggy (because that's how it felt) and I ran maybe ten steps to where she was. It felt like 26.2 miles.

Her whole body was tucked onto the seat of a folding chair in front of the sound mixing board and it was trembling like her whole self was made of jello that had been left out in a hurricane.

She scrambled into my lap and instantly I was sobbing with her. She'd had enough. She'd accomplished so much that day, done so many things I'd never seen her do before. Recover and shift and decide and move on... She'd had it and we cried and cried and cried.

In my 12+ plus years of being a mother, this was my first "lost kid" episode and my guts still haven't recovered from the fact that sweet, little PJ had to be the one. My drive and determination to keep that kid safe is mind-blowing. Why her?! I was terrified for her. I'm sure that's why I was crying, too. I can relate so deeply to how fucked up things get for her in her mind. I felt like a failure, a total loser. And then she stopped crying and we looked at each other and she told me she was glad I found her.

As I carried her back to our table so we could pack up to go I realized that this fragile little girl had done her absolute best. That she owned her day till she couldn't. And when she couldn't, she did precisely what I had always told her to do: She went to a central location and didn't' move. She found a woman to talk to. She told her her name and her mother's name. And I came to get her. The End.

It was a glorious day. I suspect there will be more of them.

Monday, September 10, 2012


The fight for female dominance has begun in earnest here at 7 Steve Smith. This month we got our periods on the same day. In other words: GAME. ON. BITCH.

Oh, she is a lot to handle. She is so tall and so strong and willful and beautiful and smart.  And she's all of those things way more than I am those things (except tall, I still win tall. This week)! I often have to catch myself from staring at her for too long before she notices and eviscerates me. With her mind.

How I love her so.

Sunday, August 26, 2012

The stylish 60 something woman with the empty 22oz Kingfisher beer bottle in front of her sitting at the table next to us at the Indian restaurant tonight may have just changed my life.

I saw her watching us out of the corner of her eye from the time we were seated till our entrees were served. When our meals were over and my kids tumbled out of their seats to the bathrooms (an irresistible spot in any eatery for my peeps) she leaned over and said: They're very good kids! I'm impressed! They have great palates."  Yes, she said 'palates'. I loved her immediately.

She asked where we were from and it turns out, she has grandchildren who live very near to us and the topic  turned to schools and public education and she said she had been a Special Ed teacher for 25 years.

I told her my sweet Link had Fragile X and she was gobsmacked. Couldn't believe it.  I loved her even more.

Link and Ruby had found a stash of toys near the bathroom and they were (he) were going for it. I told the woman that I give the kids (him) quite a long leash; that I push boundaries and see what he's capable of. Then her husband piped in. "Dam straight!" He belted out. "Let him go! Who cares what people think!" Then I wanted to crawl into his lap, too.

I suppose she read the look on my face and that's when she said it.

"It's just a moment for other people. It's *your* life. Don't let it get to you."

MY life. Their MOMENT

Life vs. Moment.  Life's gonna win every time.

Wednesday, August 22, 2012

Don't Tell Anyone I Told You

I may have mentioned a time or two this guy that I'm married to. He's (as it's been described) a "handful".

He's mysterious and strange and funny and brilliant and as handsome as they come. I think he made a deal with someone because the man is seriously getting sexier by the second.

He's away from us; traveling for work. We've been married for 14 years and in that time we've spent a lot of time apart and I can say with an honest and open heart that I can't remember ever actually *missing* him. I don't mind having the bed, kids, food, wine, bills, garbage, cats, pool, diapers all to myself. He always comes home and he's always out there getting paid.

There may also be a malfunction or two in my coping network wherein I don't *allow* myself to miss people. Regardless, it don't happen. Sue me.

Right. That's how it goes. Until late Monday, that is.

I cried myself sick from Sunday morning through Monday night. I cried all the way to work, I cried getting my hair dyed. I cried cooking dinner, I cried folding laundry. I cried changing Lincoln's clothes, I cried cleaning the downstairs bathroom. It was relentless. And so was this other thing that kept tugging at my hem... this missing thing.

Of course I didn't recognize it at first and I kept trying to flick it away like a bug. But the bastard hung in and hung on and crawled up my back and over the nape of my neck to my ear, settled into my ear and whispered: It's ok. You can have that feeling. There's nothing wrong with you. Go ahead, go miss your husband.

So, yeah. That handful? I'll take two. And a mouthful (just for fun).

Monday, August 20, 2012

The Aftermath

I snapped at both Link and PJ before we got in the car to leave for the party. I don't think I've lost my temper with the boy like that in a long, long time. He cried and Ruby swooped in (of course) to care for him till I loaded them all up.

In the car, after we got gas but before we hit the road, I apologized to all of them. My kids put up with so much from each other, their parents, life... No, they aren't malnourished or beaten or humiliated. But they are caught off guard, confused, worried & beleaguered.  I try to stay calm and even because none of us knows when the next hit is coming. Especially PJ: Her inner battles... I'm sure she feels them, that she feels different, but she has no idea why. Her radical emotional shifts plow through the station like a runaway train, taking her out first and then barrels on to flatten the rest of us. I didn't need to lose control and add to it. But I did.  They all took the apology (I mean, I think Lincoln did) and I was grateful to erase the chalkboard and move on.

In retrospect, I'm sure I was anxious. But it all melted away like butter as soon as we (finally) got to the party. Getting out of our car we met a joyful boy, all hands and fists stuffed into his smile, twirling arms  guided by his parents towards the yard. I felt it instantly. Instant calm and relief. We went in.

Huge bowls of chips on every table, a swing-set, trampoline, in-ground pool, acres of smiling, happy, welcoming faces and a BOUNCE HOUSE. Lincoln took one look at that thing and was gone (Ruby in tow. Again: of course). She kept track of her brother's safety *and* his glasses. Note to self: Secure permanent bounce-house placement in backyard, STAT.

The whole day was a glorious mix of whooshing-wheeing-mmmming, splashy boys in the pool, of whooping-flying-gheeeeing babes in the bouncy house and crunching-chugging-chewing kids at the buffet.

I've mentioned before how much I adore Fragile X dads and Saturday put the icing on that delicious cake. At any given moment you could look in the pool and see an enormous dad with two or three kids hanging off of his arms or being flung like a sling shot. Dads like sentries and cruise directors making sure all the sweet, sweet kids were safe and electrified with fun.

And there were iPads as far as the eye could see; the place was like an Apple store. And at one point I heard the funniest thing yelled from a mother at a party EVER: "Hey! He's going into the pool with the iPad!"

PJ was relaxed. She swam, she changed her clothes a million times without any  help, she ate, she got up and walked to get her own drinks/napkins/snacks, she bounced and she laughed her skinny little self silly.

And my sweet Link was just another boy at a party. I mean, it was a leeetle bit weird when he fell in love with the lawn statue and hugged and kissed it for a good 20 minutes...

We all left content and calm and exhausted.

So why did I crash into bed Sunday night fully dressed? Why did I cry myself into work Monday morning? Why do I still feel so fucking depressed?

This thing is a beast. Going to conferences, parties, events are on the one hand simply awesome and on the other hand brutally devastating. My grief lives. I ache for my babies and as much as I talk the talk and fake it till I make it I am not OK with it. I am not OK.

Is this supposed to happen? Am I supposed to roll back down this bitch of a hill, into the pit and have to claw my way back out over and over and over and over again? For how long? I mean, how many more times (I realize my time in the pit is random)?  Is this totally up to me? Because it feels like it's a surprise every time... Like, is there a certain amount of turns I *have* to take before it ends?

Before we left the party I decided to get into the bounce house with my kids. We four were the only ones in there and I was compelled to do a flip. I started jumping really high, really straight like a stick and I imagined myself up, up up and then curled into a tight, fast ball as I turned. The kids said I executed it perfectly! They were really impressed with my performance! So there was no way I could tell them that when my butt hit, I felt my whole spine compress from my neck to my coccyx and that I bit the sides of my tongue a little. The whole thing was exhilarating and painful... I suppose you can guess where I'm going with that metaphor.

Saturday, August 18, 2012

Yes, I usually keep this to myself

Today I'm taking the kids to a pool party in NJ. Why so far? Because the party will be entirely populated by Fragile X'ers and their friends and family.

Why do I want to go? Oh, god... Ready? I want to go because I don't want to be the only lady with the retarded kid at the pool who makes all kinds of weird sounds and body movements. I don't want to be the lady at the pool with the anxious/ocd child who clings and cries and WILL NOT GO DOWN THAT SLIDE. Until she *does* go down the slide and then good luck getting her off said slide.

I don't want anyone looking at Lincoln wondering "why he acts like that", ever. But it happens pretty much all the time and my tolerance for the general public wavers from massive to minuscule depending upon how much sleep we all got, how hungry we are, hot and or cold... you know, depends upon life that day.

I don't want anyone looking at Lincoln and thinking anything but what a lovely, gorgeous baby he is.

I don't want anyone looking at Penelope and thinking anything but what a tenacious, strong girl she is.

Even when I show pictures and videos of my kids to people at work (something I force myself to do) it's not %100 without baggage for me. "Aw, look at Michele's cute retarded kid who likes sharks!" Or "Hey, Michele's cute retarded kid can say the word blue! Kinda..."

I want them to be kids. Just great fucking kids.

There is this cleft in me (like a lot about me), where on one side I don't give a shit what anyone thinks because my children are pure magic and on the other side I care too much that my kids are so different and struggle more than they should. I have not come close to justifying this dichotomy.

And I know it's noone's fault for feeling the way they feel. I know that my friends at least are trying really hard. But what what can they do? They can't say "wow, he's almost 4? He's really delayed." They can't say "I am so sorry your kid isn't normal." Or "Don't you wish PJ could handle shit a little bit better?" We are a trip of a family, no doubt. We demand attention. Like it or not, every day we demand it.

Today? Today I am so fucking relieved we'll be on the same playing field. That the mothers and fathers won't be giving each other sympathetic or sideways glances. We'll be giving high-fives and bitching and laughing and complaining just like regular folks.

Today the only thing I'll be paranoid about is how my gut looks in a bathing suit; and if you know me, you know that's not something I take lightly.

Wednesday, August 15, 2012


For any time you've ever been fucked over and screwed right into the ground, Walk the Moon has given us this glorious song to belt out at the top of our lungs.

The first time I heard it the visions that rushed through my head were like the montage at the Oscars of all the people that croaked the year before. Except I didn't forget anyone important. All the assholes were there.

If I had a magic mirror I would want it to show me all the times I got the message wrong. I would want it to show me the times wherein I was the asshole so I could get the best possible satisfaction out of this song.

Tuesday, August 14, 2012

J. A. Strikes Again

Last Tuesday was the last day I wanted to go into the city for my session. Hot husband had just gotten home, PJ was seriously riled about me leaving (and the possibly-maybe-likely-chance of a thunder storm) and Ruby was coming home from 9 days in Florida later that night. Besides, I was good! I was doing really well; couldn't come up with a single thing to talk about. I was fine! But... I went anyway.

Holy. Shit. It may have been the most eviscerating hour of my life. I practically clawed my way out of there. As we were finishing and I had my body positioned towards the door, I made a joke. A good one. And he laughed and reached out to shake my hand "good bye". I willed my hand up to meet his and got out of there alive. Out through the foyer and up the few steps and OUTSIDE. Out and away from the uncomfortable chair and worse cushions. Away and breathing and blinking and not in front of him any. fucking. more.

How was it possible to feel so solid and so perforated at the same time? To have such a complete sense of whole but with bites out of my middle?

My whole life I've chased around my brain to find the words to describe a certain feeling I've had since forever. That "I'm a phony" thing, the "fraud monster"... when I was a kid and it crept up my ass I called it the "I don't belongs" and it's a real jerk of a companion: an ill-fitting, damp, dusky, smoke-stained cloak that thinks it's your favorite leather jacket, your perfect prom dress, the bra that doesn't pinch. It meets you in the morning before you get out of bed and clings to your shoulders like a moth's silks.

And when they come to take me away from my charade of a life, that piece of shit cloak will laugh me into the ground.

At least that's what I used to think. Until I started to really talk about it and let the words fall and fall and tumble out of my mouth. Until he heard the words and picked them and turned them into a picture for me to look at, to see.  And I saw the two headed monster and her mangled mind & emotions staring me right in the eye.

Last Tuesday, no shit, the seas parted, the fog lifted and I realized that even though I made that part of me all by myself, that part of me is the fake part. That part of me is extra, it's after-market, it didn't come from the factory. Get it? It's NOT REAL!

I felt immediately, instantly lighter. I did. Instead of a wet, dead dog on my back, I felt it as (I saw it as) a sort of light grey, puffy cloud thing that I could seemingly blow away.

Great! Right?

Except now the real work begins (as is always the way). Now I unravel. I pull stitches. I rip bindings and I extract this thing.


Wednesday, August 1, 2012

The gaps in writing are difficult to explain. I certainly haven't been without inspiration over the past several weeks and I've had blocks of time but nevertheless, it just didn't happen.

Lying here in the dark and quiet, really focusing on the "why's" of my writer's block,  I'm feeling that it may be that when I don't write it's because I have too much going on, too many forces pulling, too many events and moments that I put my head down and plow through like the lead dog and don't take the time to settle and see the finish line through the squall.

Well, I suppose things have calmed. Life is mild and sweet here at 7 Stephen Smith these days and I like it very much, thank you please may I have another and another and another and another.....

Do you really care about the times I've been able to completely connect with Penelope? Literally calm her during the storms? About witnessing the most awesome energy move between my husband and the imitable Ruby while they argue with fierce passion, cunning articulation and monumental love? About Lincoln falling head over heels with sharks so deeply that the first thing he says in the morning is "Thark? Eyum?" (shark? aquarium? for those of you who aren't fluent in Fragile X)?

Because this shit really fucking matters to me. I thrive in my people. I never feel better, more confident and powerful than when I've got an access-all-areas pass to my family's evolution. And when crap rains down like it always does, I dig into them even deeper, cover us all with a tarp and wait out the onslaught.

Some crazy goings on have swirled and whirled all up in my business this summer and I pretty much ruled it all like a boss (even when I finally, finally got the stones up to invite my mother here for a visit for PJ's birthday party and within an hour there was an ambulance at my front door).

And instead of writing about it, i've been living it. Sometimes that's just how I roll.

Friday, June 8, 2012

There are a bunch of bullies where I work. A bunch of the worst kind of bully: The kind that thinks they're not only smarter & better than you, they also believe they're stronger.

These fucks walk around, heads high, know-it-all-ness all shined up and mesmerizing to those less inclined to think for themselves. And they get those duped souls to line the hell up and sip the intoxicating (poisonous?) elixir of the madness they spill.

And get this! People follow them! They don't fight them! They don't stand up and challenge because the bullies act the part and are revered (feared?).

Why all the drama, mama? These assholes are MD's. Pediatricians. And they think they do a better job of parenting your kid than you do. And they are scaring and shaming parents into undertaking invasive newborn treatments for their just birthed babies. And they're doing it by fear and coercion. With one-side research and cries to burn at the stake all that don't comply.

Shhhhh! be quiet, I want to tell you something. A secret: I hate the nursery and all its scrubbed clean babies wrapped in industrial washed blankets in shitty wooden cribs and I hate those f'n doctors in there even more.

Thursday, June 7, 2012

Link woke up at 5:30 this morning. It's been raining since Sunday. I've had bad dreams for the past week and feel like I've been asleep on a bag of rocks when I get out of bed. Have you ever seen The Truman Show? I'm not exactly that paranoid, but I'm not exactly feeling %100 real these days either. Oh, and this has been my VACATION week. No work, but plenty of work.

I want to feel like I've been doing it right for myself, or at least OK'ish. But I don't. I feel like I've been shucking and jiving and as much as I loathe to believe it: I feel like I've been faking it. For me.

I don't feel good. But guess what?! I have too much to fucking do today (again) to focus on it.

Monday, June 4, 2012

They say it's your birthday

It's my mother's birthday today. I didn't remember until I saw some of my cousins posting greetings to her on Facebook. Facebook! You all-knowing, all-freaking thing.

I've been trying to kill my parents so I'm not surprised they aren't on my mind in a traditionally good way. It's been said, I've been told, I'm trying to hear and believe that if I kill them off a little bit at a time, ease them in fragments from my emotional world so they can't hurt me any more. So that it won't sting so much, make me so angry and horribly jangled the next time I have to talk to them or see them.

Maybe it's working? I'm not compelled to call and I don't feel guilty about it. In fact, I feel relieved I don't have to talk to her and hear whether or not my brother already called. And if he did call, how much sooner he did so than I. I don't have to hear how much money she doesn't have to celebrate or listen to confusing and awkwardly strung together stories about her current medical condition.

I started crying yesterday while my husband was talking to me about all of our online accounts and how to access them. He was standing behind me and felt miles tall while I sat in my chair looking up at him. Instantly, instantly I felt 14 years old and I was being blamed for something I hadn't done.

I need to loosen their grip on me. I'm not light-hearted and I can't pretend I don't feel this way. I have kids to raise and a husband to love and I have no more time for their omnipresent judgment.

So, today, on the day of her birth I hope she dies a little bit more.

Monday, April 30, 2012

The part were I nod and smile

Nurses on my unit had to take care of a patient the other day who was admitted for vaginal bleeding (again). She tested positive for pcp (again). The big difference this time? This time she delivered her 24 week fetus who will likely die.

On the day before, a woman came in to the hospital with a big group for their pre-natal class and tour. During the first half of the tour, she felt a little wetness. She thought her water broke so she came into our triage to be checked out. Within 30 minutes we were delivering her baby via emergency c-section for a placental abruption at 34 weeks gestation. I hadn't seen that much blood in a long, long time.

Last week we had 5 losses. Two sets of twins and a 39 week, full term pregnancy.

The week before that I had my hands wrapped around the trunk of a baby born not breathing, with no heart rate, limp and cold and blue as a river stone. One and two and three and breathe and one and two and three and breathe and one and two and three and breathe and... 3 minutes of chest compressions on a three minute old baby whose cry (finally!) filled the room like a giant, exploded whipped cream canister.

Whenever people hear that I work in L&D they always say the same thing: "Oh! That must be so great! Always good news!". Yeah. Not so much.

When we have a happy family, happily expecting a baby that is born (and stays) alive, we fall over each other like court jesters on ecstasy. We sniff that high like you read about. We draw in the moment and squeeze it down tightly into our guts because we know we'll be drawing from that endorphin bank account all too soon.

I have this really incredible job. People don't see what we see. So I'm here to hand you the binoculars every once in a while.

Monday, April 16, 2012

Niagra Fell. And broke. Part III

So, the intervening weeks between installments can squarely and categorically be blamed on my family and the chaos that can go into running it.

Our babysitter has been in CA so... So things have not been what you'd call "stress free". My inlaws filled in many of the gaps (and aged a decade in the process). I got an ear infection, a migraine and my vengeful period (not simultaneously and not necessarily in that order. Relax.) The kids were on alternating weeks of Spring break, my oldest had a birthday and the youngest has hit his terrible twos at 3 and a half. Hot husband's shoot schedule has been without mercy and when he's here, he's at breakneck speed trying to finish up a new bathroom before our AU PAIR ARRIVES ON FRIDAY!!!!!!!!!

Yeah. Au pair. It rolls in the mouth and off the tongue like the very best chocolate covered nugget of scrumptious-ness. I suppose the universe and her history will tell me that a storm, tumult, revolution and evolution always precedes the emergence of change, newness and calm. I'm sure madame universe would tell me that and I'd punch her in the face anyway.

The au pair is coming from Sweden and I can't friggin wait. I can't wait to have an adult female here. An adult female whose sole mission is to help us help our family negotiate the miasma we exist in.

Anyway, that's the pre-amble. Here's what you came for:

We woke up that second morning feeling pretty damn good. PJ was a wee-bit pissed off we weren't going to the water park again but we plied her with more blueberry muffins and eggs and all was well with the world (lemme fit in, however, that I tried to give Lincoln one of his medications at breakfast because I had forgotten to administer it the night before. It did not go well and in retrospect, he may have never recovered from that moment over the course of the day ahead).

The drive from our hotel to the Falls was crackling with tiny sparks and tingles of excitement. We were all jazzed up and enjoyed marveling at the dichotomy of the local landscape. Casinos can do that to a town. Pawn shops and freak shows and ice cream shops and liquor stores and fancy hotels and seedy motels happily co-habitate in the town of Niagra Falls and we were soaking it all in.

Penelope didn't care, though. She had developed a glare, a stare and a veneer of discontent that the Bronte sisters wish they could have described. We did our best to alternatively ignore her mood and to coax her out of it. Ha. Ha ha ha ha ha ha! Resilience takes many forms, my friends.

We found a place to park and we bit that fucking bullet and got out of the car.

It was a gray, spitty-rain kinda day. It wasn't nice out and not having the cooperation of the weather with cantankerous, unpredictable children is a cruelty I'd not wish on my enemies.

The Falls are LOUD and HUGE. I felt an incredible sense of privilege to be standing before them and I wanted to convey my gratitude and I wanted to experience the cell-splitting sense of humanness welling up inside of me... but... Penelope was there too. Penelope. Gray as the day and as full of power as the crushing water all around us. Penelope.

The smallest girl in the world can not only suck the air out of the room, she can suck the energy out of Niagra Falls.

Nothing worked. No amount of cajoling, carrying, kindness, understanding words, sternness... nothing. She was bloody miserable. And it went on and on and on and on and on and on and on...

We took turns carrying Lincoln, Ruby and Chris and me. Lincoln who was like a live wire in the presence of all that water. I swear he would have jumped out of our arms and into the driving force of the blue-green-black-white spray if we'd let him. The day had become painful.

When the oasis of the gift shop appeared, we dove in like starving refugees. Nope. Failure. What about making a souvenir out of a crushed penny? Yes. Yes! YES! She was happy, she was smiling. She wanted to do that. Oh God. I felt like a 2 week constipation had been relieved. Chris took the opportunity to investigate the surrounding attractions and we were ok. We were ok.

He came back and told us he bought tickets for the elevator behind the Falls. I was psyched! So was Ruby! We were obviously delirious. I know you know, but it could not have been a worse move.

The ride down was had in relative calm. PJ had resumed her uncomfortable posture, though and Link was acting slightly agitated. When I held Penelope up to one of the viewing windows underground and she saw the water gushing down in torrents in front of her face, she gasped and was so clearly and beautifully wowed. The mood stuck. She held my hand gently and asked magical questions and let me love her.

Lincoln had lost his mind. The combination of the tight tunnels and cacophony of sound was the nail in his coffin.

We got out fast and hightailed it to the car. He was like a bucking bronco on meth as we put him in his car seat. He was screaming like a three year old crack baby beginning withdrawal. I suppose I don't need to mention that it was bad in our world at that moment. So bad.

At one point I released him from the car seat and let him flail in the openness of the minivan. That action and what proceeded were not proud parenting moments and I'll leave it at that. No one was hurt yet no one was unscathed.

Chris got out of the car with the girls and took a desperate detour to the Ripley's Believe it or Not! Museum and I took Link back to the hotel. I cranked the rearview mirror down so I could spy the twisted and miserable visage of my sweet baby boy. I asked him if he was hungry. He said yes.

We stumbled into Perkins clutching each other. As soon as we were handed menus he pointed to the picture of a plate of macaroni and chess and said "this". He sat on my lap to eat it. And he did so in complete silence. I sobbed into his downy head and hated everyone and everything. My son does not deserve a difficult life; difficult emotions and moments. He is a gift and he deserves the world. Right then, though, if he could talk in full thoughts and sentences, I believe he would have told me that the whole world and everything he could ever want was in that plate of pasta. Right then, he was happy again.

Thursday, April 5, 2012

Niagra Falls. I mean fell. Part II

Having your husband enter your hotel room in the middle of the night after you thought (assumed) he was asleep in the room (bed) with you all along is a leeetle bit disconcerting.

Having your husband climb into bed smelling slightly boozy and whispering in your ear that he just won $400 at the casino clarifies things quite nicely.

It was a nice memory. That pre-dawn report of money won. It was nice. Nice and nicely shattered by the two young ones clamoring for breakfast at 7:30AM.

Hot husband was out cold. Comatose and curled up, swathed in the post-coital web of a successful night at the tables. And Ruby. Goddamnit! Can I be here? PLEASE? I mean, her without having to go to middle school again? All leggy and gorgeous. Sound asleep and draped across her bed like an offering to the gods of A SOLID NIGHT'S SLEEP.

Another glance around the room and it was clear that ding! ding! I was the winner of an early morning trip to Perkins restaurant. Turns out I won the shit out of breakfast: Eggs, blueberry muffins and three kinds of syrup can do that for a person. It also turns out that I didn't have to assassinate the waitstaff since the coffee was prompt, hot and damn good.

SO. Fast forward to the indoor waterpark. It was a gamble, sure. But as doubling down was the way we were rolling at the moment...

Ruby was gone in a flash. Waterslides? Check. Waterslides with tubes? Check. Hanging out with the family? No. Not even close.

It was really fun. For a about an hour. Link was so stoked for all the water. He stood at the edge of the little kid's area and did his best arm-twirling, mouth whooshing, leg tensing dance of approval till he felt big boy enough to climb the stairs and try the slide.

He's just incredible, internets. He is the most beautiful baby. And the two or three times he made it down the mini incline took my breath away to see him so happy. Then came the random-spouts-of-water-that-hit-smaller-than-average-three-year-olds-square-in-the-face part of the day. GAME OVER.

Had it been any other day, any other play-date and it would have been the end of the line for the girls, too. Lincoln is the priority. His emotional safety trumps all. But it wasn't any day it was this day and on this day I had my husband. My husband who lives and breathes this boy. He swooped in, dried his tears, squeezed him tight and bought him chips ("ipps") at the snack bar.

Then there were two. Me and the PJ. In the wave pool. FOR DAYS. Mama. Mama. Mama. Mama. MAMA! MAMA!. mama. mama. mama. Girlfriend can perseverate with the best of them.

We were traveling with a great, mellow family and my people's personal craziness was fully accepted and ingested with the gallons of over chlorinated pool water we were imbibing.

Really, to be honest, our first full day (and night) was a relative success.

Me and the hot husband didn't get to get down, we didn't get to the casino (or anywhere else) alone. But we did enjoy dinner with our friends (all 11 of us!), the girls didn't bicker and Link recovered nicely from the waterpark experience.

We went to bed happy AND we woke up happy the next morning. And we were psyched to take the kids to the Falls.


Tuesday, April 3, 2012

Niagra Falls (on its face) Part I

Ooof. It was the best of times, it was the worst of times...

Having children is hard; traveling with them is maniacal. Traveling with children who have emotional & sensory needs above and beyond the norm is SUICIDAL.

As if the 7 hour car ride wasn't enough of a deterrent. Whatever. We put three kids in a minivan at 2PM (naps be damned!) and hit the muthahumpin road to Ontario, bitches.

Penelope was predictable: Like an adorably quirky OCD cuckoo-clock, she asked every 20 minutes WHEN WILL WE BE THERE!?!?!?!

Ruby ate al the snacks I had procured in 17.9 minutes (a personal best).

I'm still processing the pit-stop for dinner at an Arby's somewhere near Binghamton.

And Link, sweet Link. My man held it together till hour 6. Then the wheels came off. And he burst into flames. And he ate our brains.

Going across the border was fun. The guard asked my husband if he was being punished and told me he'd sanction giving the children alcohol if we felt it was necessary.

Poor Link was out of his mind by the time we got to the hotel. Mercifully, he was asleep within minutes, the Hot Husband found mama a bottle of wine, himself a bottle of bourbon and the girls dialed Nickelodeon in on the TV.

We made it.

The shortest distance between two points

Lines: Boundaries, links, paths. Lines get drawn, crossed, smudged, broken, traced...

When I drive I take incredible (foolish) comfort in lines. I feel safe between the lines, strong and protected. I have my path, you have yours let's get where we're going and let's not die in horrific crashes along the way, ok?

When I drive I talk to the lines; pretty talk. I coax and cajole them to stay strong and straight. I tell them about their power and praise them for their obedience.

When I drive I think between those lines; I think about how I wish all the lines in my life were so stable, so solid and so loathe to be crossed.

When I drive I have conversations with all the people in my life who treat lines with disdain. People who cut and dismember them. People who sever connections, fail to recognize patterns and who swerve perilously, erratically and without pause INTO MY FUCKING LANE.

I am a good driver (regardless of the absolutely insane way I was taught to drive: USE THE TRANSMISSION TO SLOW THAT CAR DOWN, GIRL!) I color precisely between the lines. I have empathy and compassion and know how I got here and how I'm going to get... there.

My mother was in a car accident the other day and she landed square in my lap. I guess I don't need to mention how disorienting this was for me; for me and my lines.

Monday, March 12, 2012

Washington D.See

I didn't expect all the walking (even though I'd been warned).
I didn't expect so few protestors.
I didn't expect the stares. Or all of the smiles.
I didn't expect to like it.

I expected it to be harder. Emotionally.
I expected Ruby to have trouble.
I expected her feet to hurt, her stomach to growl, her angst to roar & her frailty to peer out.
I expected to cry much, much more.

Being in D.C. advocating for Fragile X research and for bills that would support people with special needs of all ages did not deliver the expected gifts or take its expected tolls.

Being in D.C. was not the "Great Provider of Limitless Empowerment" I thought it would be. It was quieter, more exacting and serene.

D.C. gave me fathers of Fragile X children. My new favorite segment of the population. All of the love, none of the machismo; these are good, good men. It gave me stories of Fragile X girls and their delicious quirks and heartbreaking fears; girls just like my PJ.

And it gave me a friend for my daughter, Ruby. A friend with long hair, plaid shirts, an iPhone loaded with drawing apps and Temple Run. A friend with a sweet smile and a high IQ. A friend with a younger brother who is deeply affected by Fragile X.

Watching them skip like little girls way far ahead of the group, way ahead of their mothers and into the almost darkness of the night of a new city towards their unpredictable futures was both bone-chilling and so, so comforting.

I looked at her mom and it was a moment of knowing that I don't remember ever having before. The hugs we shared when we said our goodbyes were deep, intimate things solidifying the friendship of those girls. Those young and powerful and so wildly vital girls.

Friday, March 2, 2012

Ruby: Mom, can I tell you something?
Me: Did you get your period?!?
Ruby: No.

Ruby: Something happened at school today.
Me: Did you get your period?!?
Ruby: No.

Ruby: I need to talk to you.
Me: Did you get your period?!?
Ruby: No.

Ruby: Mom, do you have time to take me to CVS?
Me: Did you get your period?!?
Ruby: No.

Ruby: I need to show you something.
Me: Did you get your period!?!
Ruby: NO!

If she never speaks to me again I will completely understand.

Wednesday, February 29, 2012

Does Ambien come IV?

I don't write about my husband in a negative way and I probably never will. Besides, as much as it sucks when we argue, I am never as moved by those moments as I am by the moments of sheer love and openness we have.

The perfection bitch that has shoved herself up my ass is a fickle little twat and she makes some pretty unbelievable demands of me, my relationships & my mothering. And while I can "go there" in writing with my bad mommy moments, I can not, will not, encourage that awful wretch with my marital woes.
I am proud of this. Most proud because when I write about things like I'm about to write about (Oooooo! The anticipation!) I know they won't be colored by a post just before it dissecting some shitty fight I had with my love. Suffice it to say they happen and they're likely as craptastic as the fights you have.

Anyway, here goes. I am stressed. I AM stress. My current round of alopecia is showing no signs of ever growing back, I wake up with a consistent and constant headache. I eat too much. I don't eat enough. I am getting ANOTHER fucking cold sore. I dream of crunching my teeth out of my bald head while I sit on a toilet in the middle of a shopping mall desperately trying to grunt out a shit. I dream of mutilated bodies and animals kidnapping my son. I dream of my husband leaving me with no explanation.

I am not rested. Exercising is causing my body to revolt and crumble. The probiotics, psyllium and fiber ARE NOT WORKING. I can feel the sonofabitching cortisol move all of its cousins into my gut. I have no time for extra. Extra can fuck-off.

Sex has been miserably scarce and my neck is killing me.

Well, last night we had a date. $50 Wolford stockings, fresh sheets and a locked door that turned into $19 H&M pajamas an extra blanket and a whole lot of crying.

This guy! This handsome, hardworking, loving guy! He's so smart. He's really getting it. He listened. He cried a little bit, too and then: WHOOOMP! He gave me his long-standing, every Wednesday night therapy appointment. I haven't been able to go in in a few weeks and he instantly without hesitation put me first. Not out of pity or guilt. Out of love.

Wednesday, February 22, 2012

Reason # 746 why I don't exercise: I broke half my ass today. I suppose I can expect to fracture side two tomorrow? WHY DO PEOPLE DO THIS !?!?!?

Tuesday, February 21, 2012

Fragile Mama

You know, so... sometimes it sucks. I had one helluva achy-breaky heart yesterday but the floor was busy enough that I could stuff it down until the night was over and I was sitting in the locker room, too early to clock out and nothing to do but feel the pain rising. Feel it fill my chest and throat and face till it flowed out of my eyes like the bladder of your drunk auntie's box o' wine. Rose, if you must know. Sweet and sour and buttery and never, never ending.

Crying at work just isn't my thing. My thing is BAD ASS. For real. But oh shit I could not make it stop. So picture me: slumped in a chair right by the door, tears in rivers down my face and my co-workers all WHAT THE FUCK?

I'd cut off an arm for most of these bitches and to my hard to find joy, a few of them were there last night. No one knew what to say yet some of them tried. They stumbled and faltered and made me feel not so insane. And then... then I said it.

One of my most sweetiest sweeties asked me what was wrong. I couldn't even look at her, wouldn't have seen her through my briny eyes if I had tried. But I answered her. I said it.

I said that I wished that my children were normal.

Look. I don't even know what that means. But yesterday, last evening, the thought was eviscerating me. And after it crawled out of my mouth I felt even worse. It wasn't ok. I wasn't ok.

I cried all the way down the elevator, through the corridors, past the kitchen and the morgue, out the door & across the street to the garage. I cried all the way home.

And when I got here? When I got here Lincoln was asleep in his bed on his father's chest; mouth open, hands outstretched and his blond wisps flipping up a teensy bit with every even breath he took. Penelope heard me come in and flitted up the stairs, found me on the couch, curled into my lap and let me kiss her for 72 billion years and then asked me to carry her to bed, tuck her in and say good night.

It wasn't the night I was expecting but it was indeed the night I needed.

Wednesday, February 15, 2012

The oldest one, Ruby. Is divine. Have I mentioned that?
About a month ago during a marathon room cleaning session (she asked for my help & made me promise not to proclaim my horror at her sloth too aggressively). I agreed to the conditions and got to work.

About half way through she said she needed to talk to me about something, something serious but that it had to wait till the room was organized, dusted & otherwise squared away. My heart was a billion hummingbirds bursting out of my thorax. Lying flat on my belly, right arm outstretched, fingertips gripping the tail end of the vacuum hose, I scoured the underbelly of her bed. Quickly.

So, I said, brushing dust fragments from my shirt, what's up? I WAS DYING. I plopped down on her bed and looked at her. But she was moving at the speed of light. She was here! No there! On that! Over there! "Uhm... mom?" "Yeah, baby?" "I need your help", she squeaked out.

Fuck. I was ready, though. I have been preparing, training for these moments. Even still, I could smell the sweat in my armpits. What. The. Hell?!

It turns out that my ooey, gooey, luscious baby girl wanted help with her homework. That she wanted me to bug her about it, to question her (vigorously) when she said she didn't have any. That it made her feel bad NOT to do it and really good TO do it and would I please help her.

Help you by being your mother? Yes. I accept. Holy shit do I love this kid.

Fast forward to last night: I query in my usual manner "Got any homework?" And guess what I got for an answer? Forget it, I'll tell you. She grabs me. GRABS ME and hugs me and kisses me and says: "thank you so much for following through on our agreement, mom. I love you."

I mean, seriously? She's mine?

Sunday, February 12, 2012

The Middle One

I had my hands on her all day. My arms carried her through the throngs of New Yorkers on subway platforms, in train cars, on sidewalks and along theater aisles. We floated past, into and beyond the fashion elite, dressed like it was the mating day of the millennium at Lincoln Center (what a boon! We thought we were going to the NYCB and we dove headlong into fashion week!). "Mama! That man looks like a beautiful lady!"

Her tiny hand tucked into mine as she whispered "mama!" (body curled intricately into her red velvet orchestra seat) "Are the REAL!? Are the even breathing?!" Ethereal dancers swam across the stage and into her mercurial mind. "Mama! It sounds like the music is describing EVERYTHING!". This time, eyes closed as Patti Lu Pone exhilarated every cell in her body with. That. Voice.

A million octopus tendrils feeding her ravenous mouth shrimps as big as her feet and a caesar salad on a plate the size of her whole head... "Mama! This is goooood!"

On the downtown 1 train, crowded like yes, a sardine can, her impossibly tiny face looked straight up at me and said: "I feel like a mushroom".

It started in my toes and as the knowledge grew and expanded up into my knee caps, femurs, pelvis, intestines, lungs, jugulars and frontal cortex; I knew. I know. That I will do anything, everything for this child.

"Mama! This whole day feels like a vacation!"

Wednesday, February 8, 2012

No, I'm not ready for my close-up

As I sit still, my body close & quiet. I suffer.

I put myself smack dab in the middle of some heavy shit yesterday. Some thoughts I hadn't ever thunk in public were falling out of my face like chunks of vomit. My vision blurred, my guts churned while I spoke. But I. Stayed. Still.

And it was noticed yesterday that I do this. That I hide in plain sight when there's trouble. That I fold my pain up into neatly edged packages and sit on them as if they were the most comfortable seat in the house.

This was not pleasant news. As my eyes were trying to focus, I got cold. And as much as I felt sorrow for my kid self and anger at the usual suspects I couldn't react.

Have I mentioned the people I know who I envy the most? They are the ones whose emotions are always and consistently readily available to them (at least that's the way they look to me, none of this is rational, Internets, I know that).

Have I also mentioned the therapist I saw for about a half a second when I lived in San Francisco? He's the one who said to me: "No, you're crazy *because* you're so smart"?

Justifying what I know to be right, logical, meaningful and nurturing behaviors with the ones I actually display is my current and constant challenge.

And I am yet to be convinced that on the other side of this canyon is a Michele that anyone will recognize, that they'll even be able to see through all the flux.

Tuesday, January 31, 2012

The Popeye's Fried Chicken on 125th. smells like it needs antibiotics.

Friday, January 27, 2012

42. Just like 24 but waaaay better

Today is my birthday. It's 11:29 AM and I am sipping a coffee with Bailey's in it.

This day is already a major, major success: I woke up early and happy and free of random aches and pains. I made coffee, took a shower and found beautiful, hand-made jewelry from Ruby strewn across my pillow.

Lincoln, new haircut and all, RAN into school holding my left hand in his and clutching a note pad and pencil with his other, delicate, strong and glorious appendage.

PJ looked me in the eyes while we waited for the bus as I held her elfin cheeks and told her she was my best present every single day. I love you, mama. She said. Yes, girl. Yes, indeed. I love you, too.

Tonight I get wined and dined and very likely exquisitely laid by my incredible husband.

My belly flabbs and my eyes do puff. My vision sucks and my chin hairs rage. But today? I couldn't care less. It's probably the Bailey's, but I don't care about that either.

Wednesday, January 25, 2012

For better or worse. I get it.

Let me get this straight, do you want me here?
As I struggle through each and every year.
And all these demons, they keep me up all night.

Uhm. I'm kind of a handful these days. The effort I am making to clear out my ghosts, to look fondly at my faults, to live in (not around) my emotions is baking up a not so tasty cake for the people around me... ok, for my husband. Let's face it, he's the right and only man for the job and he loves the way I cook, even when I'm cooking "crazy".

I fell in love with him for a lot of reasons but the one that I tell most people about, because it's so beautiful and rare and incredible is that he wants to change! He wants to be better and he wants to settle in to the good parts when he finds them. He's not perfect and he gets on my nerves and... he, he sees me. He knows me and he loves me anyway. And I'm pretty sure he's going to for a really long time and when that time is here, we'll remember right now in the best possible light; because that's just the kind of man he is.

(and just so you don't get jealous that i'm all sitting in my bed with a glass of malbec and a wistful look in my eye: this whole time Lincoln was crawling all over me going "wheeee, wheee, wheee in this deep, guttural voice and then he straddled my lap and drooled into my cleavage.)

Friday, January 20, 2012

She is her father's daughter: Every night that Chris has been away and Penelope has slept with me, she's gone to bed with socks on. And every morning, I find them balled up at the bottom of the bed.

Thursday, January 19, 2012

She married him. Twice.

A lot of people in my family thought (think?) that my wicked step-father "messed with me" or "had something to do" with me. He didn't. Other than punching me, stabbing at me with a pocket knife and shaking me like a busted candy machine, he never laid a hand (or anything else)on me.

He did get drunk a lot and hit on my friends, though. That was fun. Once, he slipped and fell on the ice outside of our house trying to get one of my friends to not drive home. We DIED! Watching his pathetic ass fly up in the air and crack on the solid ground, our eyes meeting over his splayed form. She got in the car and I ran to the room, both of us knowing that if either of us got caught laughing at him, I'd be screwed.

He was a beast and he scared me so much. He threw chairs at my brother and told me how great it was having sex with my mother. He wore shiny, cordovan leather boots and always, always had his shirt tucked into his slacks with a coordinating belt. Always. I mean, unless he was sitting around in his underwear, his boxers billowing around his hips and me hoping, praying the tiny mouth of penis-hole fabric stayed shut and I wouldn't see it.

When he punched me in the face (I don't know the season, time of day... when I think back on it, what the memory feels like is that I was on a soundstage in the middle of nothing. I was in a paneled room with shitty carpeting and an encroaching roof. There is no time, no time frame for me to reference. It just happened) I couldn't believe it. He fucking hit me! HE HIT ME! HARD! And then, I was in more trouble because I made him do it and I made my mother upset because I made him do it.

It was the longest punch in the universe. It lasted the entire 16th, 17th & 18th years of my life (until another, different prick decided it was OK to hit me)

That same insane few days was when he pulled a small jack-knife out of his pocket and jabbed it at my hands as I sat at the kitchen table. He got me a few times. My mother did nothing to stop any of this. I am a small person, I was even smaller then. I needed help. What I got was hell.

Intertwined with these memories are the memories of the boy I was in love with when all this was happening. He was why all this was happening... He was handsome and funny and smart and he had an older girlfriend for like 4 years so by the time I came around, he was pretty clear on what to do for the ladies. We never had sex back then but that summer he would sneak in my bedroom window at 4 in the morning and make me feel like the only girl in the world. He'd tell me I was beautiful while he kissed and held and touched me. He was good and what we were doing was perfect until it wasn't. Until I was given front row seats to the madness of that man.

Untangling my glorious sexual beginnings from insane physical & emotional abuse has been... difficult.

When the beast found out I had a boyfriend (and that he had me; in the palm of his hand) he went wild. WILD. He drank and stalked and left his job and lost his fucking mind.

Why am I telling you all of this? Because I have this really terrible relationship with anger. Everything I know about it I learned from very damaged people. I learned that pleasure and shame share very small spaces with one another. I learned that anger means IT'S YOUR FAULT and when it surfaces it's my job to mop it up... with my guts.

I am asking for help again. And I'm getting it (in does I'm able choke down). Please tell me it gets easier to feel good.

Tuesday, January 17, 2012

Do you see what I see?

Have you seen the video of the Autistic girl who learns to type to communicate? It cemented some thoughts for me, internet.

Many of you have heard me rail against typical therapies for atypical people. The goal of therapy must be to help the individual, to exploit their gifts and talents, not to make them more "table ready" for society.

My son is smart. He's funny and musically talented. He's emotional and expressive. He can learn. He just doesn't go about life the same way the rest of us do. And therein lies the huge fucking problem.

I believe we are going about this the wrong way. Carly, the teenaged girl who speaks through her keyboard and my sweet son and all the rest of you incredible people should not be IQ tested. Should not be asked to do things the way typicals do them. Should not be held to the same standards of behavior or social rules.

We need to meet them, not force them to catch up or worse, leave them behind. We need to think like them, they don't need to think like us.

I'm not quite finished with this... There will be letters written and videos made. There will be loud speeches and pontifications. There will be some hell raised.

Monday, January 16, 2012

Did you know that Lincoln puts himself to bed? That his new routine, that our new life, means he PUTS HIMSELF TO BED?

He did it the first time a few months ago, a fluke. Busy night, lots of friends and a tired, tired baby: We found him under his duvet snoring like a sailor.

About a month ago, the hot husband mounted a TV on the wall of Link's room and it has transformed our lives. Now, around 9PM we put on a movie and put the boy in his awesome robot chair. At some point, he crawls into bed and falls asleep like the most amazing magic trick in the whole universe.

He sleeps, damnit. He sleeps and we all are finally, finally breathing easy. Well... easier.

Saturday, January 14, 2012

more and more layers

Another me would have done the math in an entirely different way. Would have calculated the worth of this day in more concrete terms than the now me; the right-this-very-second-me.

A successful passing of time would be measured by what I did, what I got done.

Today, this right-here-me, can tell you that THIS DAY was and is still wonderful and amazing because of how I feel. And this feeling of 'complete' that I feel, the wholeness I am experiencing is thick like homemade frosting and just as sweet.

Today we curled hair, painted toes, tickled, giggled, ate pizza, watched movies, drank juice and celebrated with friends.

Today we, 'I' feel love.

...that only a mother could love

Yes. YES. YES! I know. I know that Lincoln and Penelope LOOK EXACTLY ALIKE. I know. My genotype/phenotype twins born four years apart.

They are beautiful children. Breathtaking, ethereal; almost impossible to define. They are photogenic. They light up a room. They are so unlike any people I have ever met and they are so like themselves.

My impossible, magical babies. Yes, I know.

Wednesday, January 11, 2012

looking for the brilliance in the grey zone

Guess what? I flew off the handle and I didn't break my life.

Nevertheless, it isn't the way to go (going all crazy). And guess what? My emotional life isn't cool-calm collected OR One Flew Over the Cuckoo's Nest. Guess what? There aren't just two choices...

Tuesday, January 10, 2012

Out of the mouths...

I had some time to waste in the city today before my appointment and instead of shopping (again) I decided to just walk around. It was about 4:30 and the streets were teeming, teeming with children and their caregivers. Like, I couldn't walk half a block without moving for a stroller or getting whacked in the ankles with a wee-little back-pack.

Maybe because I didn't have the supreme focus of HUNTER GATHERER today and I was just there, just walking, that I noticed the kids so acutely. But day-um! Their sweet voices! Their steady gaits! Their intent looks to their mothers, their nannies... Their voices.

Their voices just about fucking killed me today. I want a toddler who talks in sing-song-y tones. One who mis-pronounces things while trying to explain very complicated thoughts.

Today I was overcome with the sadness that I will never hear Lincoln's delicate baby voice say more than 2 or three words at a time. I want that. So bad.

Monday, January 9, 2012

Go ahead, ask me

As a know-it-all, I mostly get through my days just fine. No annoying questioning of my choices or actions.

I have always been a know-it-all, too. Just ask my brother, the one who'd push me down a flight of stairs for being "smart" aka "calling him a dick".

But now, knocking on the door of my 42nd birthday, I am finally realizing that this is just another one of my shields. Another layer of protection. And worse? It's cracking and it has to get knocked down with all of my other brilliantly designed (if I do say so myself) facades.

This in no way demeans my SMARTEST PERSON IN THE ROOM status, by the way. I still *do* know pretty much everything, but I'm going to try to own it more and not make all of you buy it. Get it?

Friday, January 6, 2012


While the hot husband is away for the NEXT THREE WEEKS, I will have the pleasure of sharing my bed with the wee Penelope, she of the champion snuggle-tude.

Her body is so small, tight, lean, warm, soft and fragile. Her tiny breathtakingly beautiful face with lips that ooze pink vitality framed by wispy locks the same exact color as her dad's is enough to make me cry when I see it sound asleep next to me.

Penelope has Fragile X, too. We found out about a month ago. PJ. My delicate, precious, emotional boiling pot of fierce love and affection has Fragile X.

We suspected. We waited. We knew but we didn't want to know.

The years she spent stuck to me. Her yelling, screaming years. Her ever present separation anxiety, her volatility. My worry, my husband's worry for this child's psyche... all explained yet again by the dangling little leg off of the X chromosome I gave her.

Before diagnosis, we made a pact to handle her more carefully, to give the smallest girl in the room, the most space we could. It's working. She's more at ease, we are reveling in her company. She deserves it; my lovely Penelope.

It's 11:05 in the morning and I can't believe it's another 10 hours till I get to have the littlest elf of all cozied up in her mama's arms under the covers in the safest place on earth.

Thursday, January 5, 2012

I spent $22 on one lipgloss today. A really incredible lipgloss. A lipgloss that I deserve and that I didn't realize the price of till I got to the counter and handed it over along with the $12 lip balm I impulse purchased while waiting on-line.

This is very much what some of my life is like. I was in NYC for a few hours and I got a coffee at Starbucks, got a birthday gift for my friend's kid. I also saw my therapist.

For fucks-sake it is so hard. So bloody painful. Today I thought I had a story to tell that I believed would convey a certain set of emotional conventions that would explain how well I'd been ingesting the sage advice I'd been receiving over the past month or so. That's when he told me that my vocabulary, though impressive, wasn't worth much in my therapy space. That all my fancy words were keeping me from, from... from FUCKING WHAT?!?

From my emotions. Those bastardy things again. While I kept driving to tell my story he kept stopping me to try to get me to dig in on myself and get dirty. But I won! Ha! I only cried a teeny, tiny leeetle bit. Guess what? Turns out that means I Lost. I lost at therapy today. Good thing I had already won at lipgloss or I would have been really pissed.