Friday, December 27, 2013

Michael, Michael Motorcycle & Skinny Belink the Barber, This One's For You.

Almost two years to the day older than me, my brother Michael is having a birthday tomorrow.

God, what a dick that kid used to be! We never played nice when we were little. I was jealous of him and his congenital heart defect and he was jealous of my everything.

We fought and yelled and screamed and pretty much wished the other one would evaporate for most of our lives.

It was bad. When he was bed ridden post open heart surgery, propped up like a prince on our brand new couch (set up along the wall under the big window so HE could suck in all the sunshine) I walked into the living room and paused behind our dad's massive olive green lazy boy and glared. I was so angry! So angry that I slammed my foot into the floor, loudly. It got my dad's attention (took it away from my brother) and I limped around on that fucker for weeks. Even got an ace bandage and a pair of crutches out of the deal. A small victory.

Once when we were in middle-school, he pissed me off so badly on Christmas morning that I dropped (threw) his Galaga hand-held game on the floor and he promptly pushed me down a flight of stairs (at least they were carpeted).

I remember the day our mom whacked him over the back with a broom stick. That same day I decided to never be mean to her. No talking back. No nonsense. No way.

When I was little, 6 or 7? And it was Easter and The Wizard of Oz would be on soon for its once a year broadcast and I was in my room lighting the matches my uncle left there (we shared my room then, he slept in my bed during the day after his night shifts and I slept in it while he worked). My brother came in the room and saw what I was doing: lighting a match, blowing it out and carefully putting it in the ashtray. That kid FLEW down the stairs to tell our mom. Not only did I not get to watch The Wizard, I also got the beating of MY LIFE with a spatula. Thanks, bro.

Now, I'm sure he's got as many, if not more shitty stories about me. How could he not? We were parented by the same damaged people. Lived in the same loud-screamy house together. We were just grabbing our piece of the pie. Right out of each other's mouths.

So the summer day when I was in my mid-twenties and he came to visit me to go to a party in New Paltz, I just assumed the fight we ended up having would be the last time we'd ever talk to each other.

Nope. Wrong. Dead wrong.

That argument changed everything. He had so much to say and so did I and we listened to each other. And we realized how much alike we are. How much we like each other, need each other and love each other. And it's been that way ever since.

My brother is one of my rocks. He's totally nuts and emotional and he's funny and he loves my kids for who they are, accepts them unconditionally and he digs my husband.

He's loyal and handsome and he's a champion of our beautiful and wild extended family. He's a cheapskate and a homebody and an amazing red sauce-meatball chef. Unfortunately, he's also still a Red Sox fan.

Happy birthday, big brother. I love you. So much.

Friday, December 6, 2013

Teen Beat

I love teenage girls. I could bathe in them, eat them up and sleep wrapped in their impossibly long legs and hair for weeks on end. I love teenage girls. There is no match for their passion, their joy and rage. They are fearless and funny and smart and sweet.

Walking through the mall yesterday with Ruby and her friend I realized this should be mandatory, this hanging out with teenagers thing.  Should be prescribed under the treatment heading: For Restorative Purposes.

They like their music as loud as I like mine. They are boy crazy like I am man crazy. They crave sugary, hot coffee things with even sweeter things to eat along side. They try out their wit, they make the joke, they punt.

And they need their mothers. They lust for them. Search for them with their eyes and smartphones when they're out of their line of vision.

And when they find us all of those long arms are all over us offering to carry bags and share sightings of cute boys and nice make-up and fabulous coats, boys, boots, sweaters and adorable kids, babies, senior citizens and boys.

I had no idea this part would be so much fun. Thanks, Universe. Really.

Thursday, December 5, 2013

Words, words, words

In the middle of last month I took Link to a Fragile X Clinic here on the east coast, on Staten Island. I was exhilarated and nervous and cocky and proud and worried and all of those things that happen to me when I am doing something specifically related to having a kid with Fragile X. I have a kid with Fragile X. I don't say that in my head a thousand times a day like I used to. It isn't a hellish mantra that torments me any more. It's what is. And on that day, late in the fall, I piled small boy, his iPad, Buzz, Woody and a shit-ton of snacks into the mini-van and drove across the Goethals Bridge.

The clinic isn't nice. It's not pretty and cozy like the MIND Institute out West. The architecture of the buildings is very cool, very early seventies. But the landscape is drab and dark and the grounds all dry and the pavement is cracked and buckled that from the outside, it looks like an abandoned sci-fi film set. And once inside isn't much better. Naugahyde chairs, creamy-pale-green walls, shitty fluorescent lighting. Ugly.  But then the people started showing up. People offering coffee, compliments, hellos and perfect, welcoming smiles and instantly I felt aaallll riiiight.

The day was tough on Link. He put on quite a show towards the end, climbing on tables, spitting, yelling shut-up! The whole nine yards. Delivered promises of french fries smoothed out the edges and we were home and exhausted by the late afternoon.

Today I got the report.

Why am I never ready to read these things?!? Will this ever, ever EVER get any better? Easier? I want so much to be indifferent when the words on the page say things like: "… which places him in the cognitively delayed range of functioning."

Can I keep him here? With me? Just safe and so exquisitely happy and away from stark, bleak words. Words that we never speak here! Only out there, with everyone else do those words happen.

Diagnosis is (for me) the purest definition of a blessing and a curse all bundled together in an elegant & grotesque package. Diagnosis is both devastating and essential for progress. Without harsh, colorless words of diagnosis, you fight tooth and nail for services. For proper placement and appropriate educational settings. You stumble to explain WHY your child NEEDS. But with it, you simply slide the papers with the words across the table and… Like sneaky black and white magic all rustling together in a silver cloud, you get what your child needs.

I hate the report I have in my hands. I hate it. But without it...

Friday, November 22, 2013

The Prince Had A Birthday

You are five. You are five and I am still here, still sane. I didn't die of grief, I didn't lose my mind.

I have grown with you, changed with you and learned to be a better person, friend, wife and mother.

You are five and you walk around the house saying "luff you, mum". You hand out kisses to random and available body parts as you float by. You say "come 'ere! Follow me!" when you don't' want to take those little trips up and down the stairs alone.

You tell us to "STOP IT!" when we're pissing you off and demand hugs when it's just too much to stand there by yourself not being hugged.

You swallow pills and tolerate nasal spray. We can brush your hair, clip your nails and clean your ears without needing a propofol drip to keep you calm. You prefer soft pants and striped shirts and you let us know these things when we're helping you get ready.

You do your homework. You ride the bus. You make choices in the cafeteria and you have friends.

You adore your grandpa, sharks, whales Woody and Buzz and anything made of chocolate (or cheese. or pasta.)

And oh my god you love us! Lincoln, your trust and openness and complete devotion to our family has made us impossible to defeat. Every one of us basks in your wonder! We all strive to meet your level of awesome. You carry us through and are always waiting on the other side with your sparkling eyes, a sweet, soft touch and that smile.

Thank you, baby boy. Thank you for coming and staying and saving us. Thank you for showing us magic.

Thursday, November 14, 2013

Watch This Space

Yesterday was a Maker's on the rocks kind of day. Yesterday split me open a little and a little of me spilled out. I'm not a "sharer". I don't cry. I don't yell. I keep my emotions very neatly wrapped up like perfectly organized bamboo baskets full of steaming and precisely cooked shu mai.  Not so yesterday.

My grips are falling. The metal is rusting, the rubber eroding, the ropes fraying.

Yesterday I took one hand off and swung a bit. Threw my head back and felt what so many people must feel every day! I felt my emotions and I acted on them and I tore my armor and let the air in and I didn't feel a million creepy bugs crawling around in my belly. I didn't want to throw up. And I wasn't embarrassed (But I probably should be. People: I just don't know how to act sometimes.).

When I left work yesterday I knew bourbon was in my future. Warm and beautiful and laced intricately with some of the very best memories of my life.

That one drink shared with a gorgeous woman who knows me and keeps my heart close to hers, was bliss. It was otherworldly. Surreal.

The light I let in let me see something. It told me something. You know that feeling of excitement and electric energy moving through you quickly in pulses you couldn't begin to measure the speed of? It felt like that. It felt like I knew I was getting the best Christmas present in the whole wide world.

Yesterday was a revelation. Today begins the revolution. (I couldn't resist)

Thursday, November 7, 2013

Me and my, me and my, me and my… Friends

My friends high-five me over 200 year old headstones in decrepit graveyards. My friends take me to decrepit graveyards.

My friends get me to a place where I can let go and cry and laugh at myself for being such a shitty non-crier. They covet my jewelry. And my clothes. And my hair products. And my bags and then they let me give them any and all of those things whenever the hell I feel like it. They tell me I'm beautiful.

They are amazing mothers to all of their children wherever those children may be. They recognize the glory and the magnificent difference in their progeny and they honor those differences like the gifts they are.

My friends adore eating and cooking and cleaning and do so with relish. And they hate to cook and clean and eat and wish there was a pill to take care of all three.

My friends love. They love their men, their women, their lovers and partners and friends.

They talk about sex and shit and periods and migraines and manicures and grey hairs.

My friends remember the movies my kids like and the funny things I say and the bands I like to listen to.

They tell me about new wines they've tried and want me to try and want to know what I've been drinking (everything).

My friends have been with me before I had sex for the first time and shepherded me through the aftermath of unprotected sex at 16, before I took the first punch from an angry, asshole man. They took me as an honored guest through their own personal and exquisite hell and let me greet them on the other side of that odyssey to only be more loving and more wonderful than they ever were before.

My friends were there to see my babies be born and to watch my babies when another one came barreling to earth. They tell me they miss me when I'm not around and know how I feel before I even feel it.

Each one a delectable and unique treat that is always there for me to unwrap and savor just when I need them most.

Take a shot of Tequilla during the 10 second ad and then dance! Dance like your friends are all watching!

Monday, November 4, 2013

4th Grade Teacher Crush

I met with Penelope's teacher this morning after a failed Halloween afternoon appointment with her. What was I thinking not canceling that shit anyway? Anyway. We got together today and I am still reeling.

She is every bit as wonderful as Penelope says she is. She is strong and blond and beautiful and engaging and willing to do whatever she can to help my kid.

She didn't flinch when I told her we don't expect Penelope to be an academic. That instead we expect her to be happy and successful. She didn't flinch when I told her that my kid's incredible reading ability is for function only, that reading for story and pleasure couldn't appeal less to her.

She actually read all of the information I sent to her on girls with Fragile X. She wrote down everything. We made a plan so PJ doesn't have to see her pretty shitty grades on math tests and reading comprehension tests. The plan will give my girl confidence and not break her stride.

We made coordinated gagging sounds over the motherfucking Common Core.

She told me Penelope is gentle. That she doesn't raise her voice. That she is polite and helpful and raises her hand to answer every single question that gets asked in class. She also told me that if she needs to know what went down during the many, many drama-fueled 4th grade outbursts in class, she asks PJ for the truth. Ever watchful, observant student of human nature, PJ.

And she also agreed to come to speak to the class about Fragile X (Penelope's idea). She asked if I would do it for the whole grade so all the kids and all the teachers can benefit.

I'm gonna be smitten for a while with this one.

Saturday, November 2, 2013

Secret Weapon

I am who I am because I am the mother to Lincoln. I did not know what I was capable of until he revealed himself to me.

This is important. This is special and unique and rare and I do not take it lightly. I am lucky. My gift was given from within and is impossible to ignore and every single day I am telling you that I feel joy and love and peace that can not be named when that boy wakes up and says "hi, mama" to me.

He is why I can keep on loving and not give in and change and move and grow.

He is why I can't be bitter. Why I am calm. He is the reason I don't yell at my kids. The reason I understand that they, like me, aren't perfect and really just need a little bit more time to adjust…

That my father never met Lincoln is a tragedy because everyone who meets him knows he is magic. That he is a prince. That he is here to be good and to let you be good with him. Russell could have used a little Link in his life.  We all can.

Friday, November 1, 2013

RUSSELL J. O’BRIEN, of Grawn passed away Oct. 26, 2013, at the age of 71. Private family services will be held at a later date.

My father died. He lived in Michigan near his people. Michigan was a place the Quincy, MA O'Brien's migrated to many decades ago and when he and my mother divorced, I think it was the only place he felt was his. His mother lived there and she took care of him, protected him. Me and Lillian O'Brien may have been the only two people who loved him after the divorce and when she died and I grew up thousands of miles away in Nebraska, he disappeared into Michigan, made a new life and took his last breaths there.

I've written about Russell before. I've always described him as wholly unremarkable. He embarrassed us as kids with his overreacting and loosy-goosy emotional outbursts. No one liked him. His father hated him. My mother's family treated him badly (except for my cousins, those fuckers are always spreading the love! They are like a coven of good witches, seeing the best and broadcasting the news).

But when I was young, I was in love with my dad. He perpetually reeked of petroleum and I soaked that smell in like %100 oxygen. He had a soft, mushy belly that I would mold into loaves of banana bread as he watched Barney Miller and M.A.S.H in his olive drab naugahyde recliner.

He made my school lunches. He cooked most of my dinners. He was never mean to me and he never yelled at me and he never hit me.

He also disappeared. There was limited contact after he and my mom split I spent a summer with his wretched sister in Charlevoix, MI and he came to my high school graduation. The last time I saw him I was in my early 20's and he and my brother and I went to the movies and the diner just like a little divorced family should.

Then there were sporadic phone calls wherein he asked me for money. Lots of money. And the last real conversation I had with him I invited him to become a part of my family. I was married, had a beautiful daughter and told him that if he wanted in, he needed to call once in a while. Send a card for his granddaughter's birthday, maybe one for Christmas. I said he needed to try.

But he couldn't. And I moved on.

When I told Ruby he died she started to cry and I said No! Don't! I'm not sad, baby! Don't cry. And she said I'm crying because you're not sad and you should be able to be sad when your father dies.

Hot husband said the same exact thing. 

Those two. My loves, my heart. My god! My father died but he has been gone for so long already that I don't know what to do with myself.

He was married and I called his wife to tell her that I'm sorry she lost her love. That I'm sorry if he was in any pain and that I never thought he was a bad person.

She said he'd talk about me all the time. Me and my brother.

Is that enough? That's what I have swirling in my belly: The words of a stranger telling me that for at least the last 15 years, I was on his mind. Is that enough?

Saturday, October 12, 2013

You're Getting Very Sleepy...

Sick is weird. Hazy and depressing and self indulgent. Sleep is my favorite cure.
This sick isn't long-term, though. It feels flighty and itching to move out already. But it keeps coming back to the apartment to get that one last thing it forgot...

I slept as much as I could these past 24 hours and now it's all taking care of shit again until I can go back to bed tonight and sleeeeeeep some more.

Lincoln doesn't feel good, either. He's going on like a solid week of a nagging, thoughtless bitch of a cold that couldn't care less how much it is hampering with a small boy who has a hard enough time expressing himself when he's well, forget about when he's under the weather.

He won't knowingly take medication. He can't blow his nose. His gag reflex is nonexistent and he hurls vomit like one of those crazy sprinkler head toys we had when I was a kid... what the hell was that thing called? Anyway, vomit everywhere even if it's just a little bit.

And while I understand that many of your children suffer from these same inadequacies, internet people, I don't give a shit today.

Today I am reminded of all the sleeps I've ever taken to make a sick go away. And it usually works. Usually.

But that time, about 3.5 years ago when we found out Lincoln had Fragile X, sleep was no gift of wellness. Sleep was hell.

Sweet man would cry in his sleep and wake up crying and go to sleep crying. I dreamt. Dreamt of a million sons that weren't mine. Just hell.

Last night during my marathon of get-well-sleep I dreamt of a boy. An amazing magical kid who was so alive! And capable! He was navigating me through an amazing landscape that was part 5Pointz Brooklyn, part Arizona desert, part suburbia, part sic-fi city. And he knew everything! Was telling me whatever there was to know about whatever we walked by and he was confident and surefooted and strong.

Now I know what you're all thinking, you lovely looking on the bright siders. But that's not the feeling I woke up with.

I woke up with dread. And sadness. And anger. And a real big hankering to just go back to sleep.

Tuesday, October 1, 2013

Daddy Knows Best

After hot husband lit a fire and poured me another glass of wine, he told me what the littlest elf said to him as he tucked her into bed:

"Dad, will I always have Fragile X?"
"Yup. I mean, unless there is a cure for it someday."
"Good." She says. "I like being different."

Ok. Ok, ok, ok.

Up until very, very recently, PJ denied FXS as her reality. And as she's accepted it, she's only spoken to me about it and only to say that yes, she knows she has it, blah, blah, blah.

My sweetie! Opening up! Talking to her dad and telling him how good it feels to not be like everyone else.

How I wish she said it to me! I'm so jealous! I want to crawl into his head and snuggle down with that nugget! Lucky bastard.

Monday, September 30, 2013

What not to wear (or do. or think.)

My newly minted high school freshman came home from her first day of school with so much information crawling out of her that, to be honest, I tuned a bit of it out. Then she started talking about the assembly with the school principal. The all girl assembly wherein they were talked to about being "appropriate".

I bristled. Non-conformists tend to do that so I didn't pay too much attention. I even offered up an explanation as to why the head of her school would be telling 14 year old girls why dressing a certain way can send "the wrong message". I said, "well maybe she's making up for the dumbness of the people who see you? Maybe she's saying they may think a thing you didn't mean by the way you look?".

She stared at me. Pissed. And went on to tell me that the boys get no such talk. That the boys are given a complete pass and aren't asked to absorb any responsibility for the way they act when they see girls just being girls. That it was made patently clear that the girls are responsible for sending the message and the boys are merely the receivers.

Uhm. WHAT?

She also said that the principal specifically called out girls who have large breasts and said those girls should be particularly careful about the clothes they wore so as not to draw too much attention.

Now my kid is 13 years old. She's accelerated a grade and a full year younger than her peers. She's also 5'5", 125 pounds and wears a 36D bra. And the message she gets on her very first day of high school is that she is somehow responsible for the perceptions of everyone who sees her?

I watch some TV,  I read magazines and I am an internet whore. I see the way young women are marketed to but to hear that this was blatantly happening in our schools was a bigger shot to the gut than a Dorito-taco-nacho-supersized-supreme-big-mac.

And it got me thinking about how we deal with the burgeoning sexuality of our middle-school and high-school aged kids. How what my kid heard from her female principal about her being solely responsible for unwanted advances based on the way she's dressed is leashed to the bigger elephant in the room, the still aggressive push to teach abstinence in schools.

Go to school, cover yourself. Don't think about sex. Wait till you're ready. Cover yourself.  Go home. Do your homework. Study. Don't have sex.

The current approach to sex ed is saying "No" as a defensive move.

My vision for my daughter and her friends and every other young, sexual being out there is "No" as offense. "No" because her sexuality and sexual actualization, sexual pleasure should not be tied to another person.

When she goes on a date, I don't want sex to be the only thing on her mind, clouding her away from who she is, who she wants to be to the world, what she wants to learn from other people. I want sex to be wholly and completely in her control.

Telling our kids to abstain but giving them no alternatives is maddening to me! I can't imagine how it feels to the hormone fueled young people it's people preached to.

We are sexual. We are here to breed, to reproduce and propagate the species and we do that with sex and as much evolution we've gone through, our lizard brains hold TIGHT to that mission.

We can't remove sex; we have to re-frame it and hand it back to our daughters a complete package that is theirs to control no matter how they look/dress/are.

More to come.

Tuesday, September 24, 2013

My eternal +1

This having a kid thing really has its perks. The other night, the delicious oldest daughter let me take her and a friend to a concert. She keeps doing this, by the way. She keeps letting me in, listening to what I have to say, and then saying a whole bunch of brilliant stuff back that opens more and more avenues of connection. Connections thick like her glossy locks and her stares that see to everywhere.

So, with her approval, off we go to see Walk the Moon at Terminal 5 in NYC. Now this is a band I crammed into my head like Play Doh last summer. Is there a superlative for the word 'repeat'? Because I need that word. Because that word is what I did with their album last summer and seeing them live with my daughter dropped me right back in that mobius strip of over and over awesome.

I don't think I'm alone when I say that getting old doesn't really appeal to me (and I mean, losing touch, relevancy, a connection to popular culture). This is so hard to articulate for some reason. I think maybe because when I was Ruby's age I remember looking to everyone else for myself.

But that now that I am who I am I can BE WHO I AM. I can!

This show was my favorite so far. Ruby was familiar with the venue so she staked out our spot. She held her ground and dug in deep and the kid nailed it. Every once in a while I'd move my eyes from the stage and check our crew and we were all up to our eyeballs in the show. All singing and dancing and jumping and fist pumping and smiling and sweating.

That I get to have this now, this revelry in my vessels...

She gives this to me. My child. She listens and opens the door for me and makes a super cozy spot on the couch right next to her so we can be and get our brains blown open with talent and grace and humility and gratitude.

During the show I fell in love with everyone about a thousand times. And every time that girl of mine looked my way or touched me I won the whole world.

Thursday, August 8, 2013


I left your jersey in my hotel room. I couldn't take it with me and I couldn't give it back. So I left it. I draped it over a chair and no, I didn't take a picture.

Funny thing about memory... it turns into what you want it to if you don't have a photo to look at days and months and years later.

I don't want to remember your tragic face and darting eyes. And I don't want to remember anything you said.

The feeling of your hand on my back? The way you spoke into my neck, just behind my ear? Those things I'll keep because they were the candy coating to a pretty crap-filled time in my life.

Find peace, Nebraska boy. 

Wednesday, August 7, 2013

Your Plymouth Updates Have Been Pre-empted By NEBRASKA.

I'm in a hotel room in Nebraska right now nursing a pretty decent hangover and wouldn't you know it, the fucking place only has Pepsi. Not. Cool.

I search. I am a searcher. Mostly for who I am, what I'm doing, where I've been and where I'm headed. I still have some very fuzzy lines to fill-in, darken up and make straight. The past 5 years of my life have been filled with some intense moments of revelation and I feel like most of them have come in the last 24 months or so and have hit me like golf-ball-sized-hail-storms.

Yesterday and last night my umbrella got particularly devastated by the elements; so I chucked that shit aside and waited for the sun to come out. And come out it did.

I haven't been here in about 30 years. I left a 14 year old weird-looking, pimply-faced, awkward, insecure weirdo (deliberate emphasis on 'weird'. Maybe that's why I hate that word so much, my stunning husband? Because I so associate it with who I believed I was?). And I left behind wonderful friends who I couldn't have survived that time without their constant companionship, love, laughs and solidarity. We had so much freedom! Thank GOD! I was never home, there to eat and sleep and a lot of the time, my friends were eating and sleeping there, too. We walked everywhere; we were a gang, a family that roamed the streets of Papillion, Nebraska. And before long every inch of it was mapped into our minds.

Yes, we went to school, blah, blah, blah... but we also kissed boys and drank whiskey and smoked pot and talked and talked and laughed and went to the movies and football games and soccer and softball practice. We went to the fair in the summer and the haunted houses in the fall. We sang in the streets and sat around on park benches.

And I, by all accounts from last night's conversations at the 25th high school reunion I flew head-long into, was nice. I was nice. I was a nice person and a good friend and people liked me. People I don't even remember that well remembered me as being nice. It's crazy. It makes me cry. I'm sitting here writing this and the tears are coming like they did last night when the message sunk in: I was nice. I wasn't a snarky bitch. I didn't pick on people. I didn't make people feel bad so I could feel better. It's astounding.

So when did it really kick in? When did the reality of Michele: The Total Fucking Bitch start? Because I know that shit is true, too. As much recent confirmation I've received about my human self, I have plenty of dusty, shitty confirmation of my pure ass-holery-soaked self.

When was the damaging blow struck? How old was I? Where was I? And why? Why wasn't I able to stave it off and kick its ass? It's the only 'me' that I have any historical attachment to so my assumption is that it happened a long, long time ago. Like forever ago. Like first cry=jerk ago. But I guess not. I guess that until I was at least 14 years old, I was nice.

And those wonderful friends I left behind remembered that person like I had never left. We fell into step with out a glitch. We all swear, we make fart/ass/pussy/shit jokes. We love our families and our friends. We drink, we eat good food and we never miss an opportunity to drop a pun, make fun of ourselves or each other. It was miraculous and so much fun.

I'm exhausted. And my flight back to NY leaves soon. 

It's really Important to note that I assumed that everyone but the four core girls in my group of friends were the ones that must have hated me. They must have thought I was a jerk if not all of the time, then most of the time.

I can see myself in that yellow house, in my bedroom under the covers, in the bathroom with the door locked, in the kitchen crouched beneath the counter talking on the phone. Hiding. If they saw me, I’d be in trouble for something, have to do something to repent for the thing I didn’t even know I had done. Oh, god, the yelling. The house always thick with THE LOUD and shrouded in cigarette smoke.

I do remember that my mother would cook sometimes and sometimes my friends would come over and eat with us and because of who she is, she was always very funny and edgy and I think that my friends liked that, thought she was “cool”. I liked that. I made that be the truth on the outside but my heart held it differently and when I found out things this weekend like my mother would drive us places! Would pick us up from the movies! That my mother participated in my life and did more than what she absolutely had to! I was hurtled through space. 

I believed these people (too many with the same stories for them not to be true), but I had no touchstone of my own for those memories. Not until I was reminded of a hilariously, hilarious 8th grade boy joke that was made in the backseat of one of those rides, did a solid line form from the me right now, to the me back then.

The line colored itself in nice and thick and straight and strong and I have it now. And I am letting it take up space and connect me to some of the happiness I must have had in that house, outside of my friends.

Answers are creepy, crawly little things that shape-shift if you don't pin them down and arrange them just so like butterflies affixed to muslin covered boards. 

I'm closer. I have some beautiful creatures fluttering around me. Now if I could just find those fucking pins...

Wednesday, July 31, 2013

Plymouth 2013, The Wedding: Part II

I was not mothered by a compassionate person. Narcissists aren't programmed like that. I do remember when I was young, younger than 11 or 12, that she had some pretty progressive political views and that made her, for a time, seem like someone different and cool. But then I grew up.

Hot husband hasn't been able to spend too much time with my family, but when he does, he kicks back and enjoys the ride. These are vibrant, loud, free-thinking, loving people and observing them in their natural environment (ie. A party) is a sight to behold.

Something that he said when we got home made me realize that I learned all my goodness from them. I am giving and tolerant because of them. I can laugh at myself and express myself because of them.

My family sings, dances, plays instruments, makes jokes (mostly about themselves) and generally gives zero fucks to anyone who may be judging them.

No, these are not impervious people. Yes, they have anxiety and fears. No, they don't think they're better than anyone else. Yes, they worry and feel sadness. Their humanity is thick like the humidity we were nuzzled into that day in Plymouth.

And along their achingly human way, they GO FOR IT. And I mean as a group. There is not one dud in the bunch. There may be detours (and some of those may last for years), there may be bumps, but this tribe CARRIES ON. Especially when the wedding venue kicks them out and the paradigm shifts immediately to the after party.

*cut to my personal detour back to the hotel to check in with hot husband and the two youngest Sgueglias:

Ruby and my magical au pair, Mimi were coming with me to the party but they needed to change and I needed to get laid. Two hotel rooms IS KEY, PEOPLE. For crying out loud! Spend the extra $204 to have sex with your husband! Libido sated and small babes tucked into bed with their delicious dad, me and my lovelies were off*

My cousin Mary's house was the destination and when we arrived, the driveway was packed with cars and a half dozen more snaked down the street. I could hear the laughter from 10 yards away. Ever since my grandmother and her cranberry juice & vodka drink flinging in the face of THE ONE WHO HAS OFFENDED died, parties in my family just aren't shitty.

We stayed till the fire pit needed more wood, the guitars needed tuning, the wee ones  were sacked out on couches and the little voice coming from my heart begged me to never, ever leave.

This is love. This is how you get married.

Wednesday, July 24, 2013

Plymouth 2013, Day 2: The Wedding Part I

The hotel we stayed in had an indoor pool. A pool of any type is KEY in keeping my boy centered (and exhausted) while we're away. PJ loves it, too. Her Fragile X has made her a born "rehearser". The kid tries and tries and tries and tries till whatever she set out to do, is done perfectly. Right now she's trying to nail down her back-stroke and the butterfly (both of which she taught herself).

So after a hilarious early morning run to the Dunkin down the street from the hotel (Why so funny you ask?  While me and Link and P. are eating our bagels and donuts and cappuccinos with extra shots of expresso, burly dude after burly dude comes in and orders iced-blueberry-mocha-lattes with extra cream and three splendas and double chocolate coolattas with whipped cream. Who are these men?!? These are men who are not afraid to be associated with fancy coffees, that's who! These are Massachusetts men! I was so wishing my grumpy, sleeping, leggy Ruby was there so she could share in the madness with me) we suited up and headed to the pool.

If you have never experienced the jhoooshing, and wheeeeshes and mmmmmmmms of a twisting and tensing and smiling and spitting 5 year old Fragile X boy, than you have not yet been in the face of pure joy. The kid LOVES the water. And while PJ zoomed again and again and again down the pirate ship themed slide and flailed majestically across the deep end tightening up her dolphin kick, Link and I stood at the edge of the pool for what seemed like 10 million years jumping in and out and in and out of the pool's shallow side.

Time flew and before I knew it, we had grab Ruby and Mimi and eat up some lunch before the pre-wedding crunch of GETTING READY was upon us.

The easiest thing to do was to hit the hotel's restaurant. That goddamned place! Because as soon as we walked in, Link started fussing. Whining, squirming. I feel like there should be a world-wide Fragile X task force that reports to a centralized website on restaurants around the globe so we f'n know in ADVANCE that a place has crappy energy/vibes/atmosphere! Good thing there is wine. And that is all I can say about that.

So, yeah. Our hotel rooms were madness by the time we got back from lunch. All available cousins were primping and preening and teeming about. It was hectic. Link was running in and out of rooms and into the hallway. PJ was crying off and on about letting/not letting anyone help her with her hair/make-up. Ruby was pissed in general. Beautiful and pissed. I had no time for a shower after it was all said and done just a high-school-style-leg-shave-on-the-edge-of-the-tub. I don't even think I washed my face. Mean Ruby did my hair (beautifully) and we left. At 3. The wedding was supposed to start at 3.

It was 5 minutes from the hotel, if that. But I made sure we'd be extra late by missing the road. Twice.
When we arrived we flew into the venue and smack dab into the bride who was about to make her entrance. Classy.

Like a tornado, we careened towards some seats that happened to be RIGHT IN FRONT. Link, nap-free Link, was in my lap and about as relaxed as a greased octopus.

You know that part of a wedding ceremony when the officiant asks if there's anyone who thinks the couple should not be married? Well, this wedding's version went something like: Are we ready to witness the marriage of these two people? To which Lincoln Anthony Sgueglia promptly (and loudly replied) "NO!"  His beloved status within the family saved his blond ass from a mutiny, I am sure.

10 minutes later, he was asleep in Mimi's arms in a quiet, cozy part of the venue and remained thusly till his devastatingly handsome father (soaked from a 3 hour motor cycle ride in the rain) FINALLY arrived and calmed my heart and soul like an Alka Seltzer of love.

Sunday, July 21, 2013

Plymouth 2013. Day 1, Part II

Stephen, Billy, Cathy, Peter, Maggie, Billy, Matt, Jimmy, Jim, Mary, Mary, Philip, Richard, Chris, Joey, Shawna, Grace, Marie, PJ, Paige, Collin, Joe, Gail, Lori, Noel, Leah, Karen, Michael, Tommy, Joe Joe, Dan, Abby, Madeline, Don.
And that's not the boyfriends, girlfriends, husbands, wives, friends whose names I can't recall right now.

These people were the army that showed up to form a phalanx of love and acceptance and joy around my family.

Some of them I hadn't seen in over 15 years, some of them I'd never met; yet here they were: Happy, fun, funny and as in love with my baby as I needed them to be. Without asking, without a question of doubt, they trusted and shepherded my boy that night.

They let him push their baby on a 10 minute walk across town in the dark (duh. yes. with help). They scooped him up and showed him all the painted pictures of sea creatures in the very, very loud restaurant we ended up in. And it bears mentioning that one of the cavalry who carried him around that first night, my cousin Billy, is not your average dude. Not in looks or psyche or approach to life. Billy (William O'Keefe) is a wildly talented painter and musician who lives on the streets in Cambridge, MA. He has an inarticulate mass of orange hair, the color of pumpkin flesh that lives by its own laws on top of his head. He's thin, bony. His face pale and chiseled. He smells of oil paints and cigarettes and Lincoln adores him. Explain that.

The answer is: FAMILY.

They shared their food and their laps and their water. Their laughs and dance moves and utter fucking love of life.

Lincoln fell asleep that first night in the arms of our sweet Mimi and we took turns carrying him back to the hotel with some of my cousins and the lovely Ruby.

And the next morning he woke up kissing my face and asking for "eat" and water and his iPad as my gorgeous cousin, Lori, in the next bed was saying the most wonderful things about him and his magical personality.

24 hours in and I was ALL IN. I never wanted to leave.

Monday, July 15, 2013

Plymouth: July 2013, Part I

In bed, sipping coffee. Kids are gone, house is quiet(ish) except for the occasional and adorable monologues by the hot husband at foot of the bed. Outside my window there is a squirrel sleeping on a tree-branch; allegedly already exhausted from the heat.

I'm procrastinating a little. Buncha stuff to do. Post weekend away stuff: Unpack, do laundry, organize the overnight bags, clean the puke up from the back of the car...

Let me back up a bit, k?

Day 1

The ride to Plymouth on Friday to see my family for a long-over due reunion/wedding was pretty f'n great. I was open minded, packed lots of snacks, water, apple computer products and accessories, Toy Story paraphernalia, minions, you know, the usual. There were no urinary tract emergencies, expended crying jags, extended crying just some annoying bouts of unwanted sisterly physical contact. I was feeling lucky.

Excitement was at a fever pitch when we got to the hotel (my kids love hotels, like unnaturally so. And the vibe out immediately on the ambiance & the possibility of room service and unlimited down pillows).  And I was caught up in it, too. Link was so good and so happy go lucky that I took it for granted he would remain so.

Fast forward 30 minutes and we're sitting in the little tavern inside the hotel waiting on some grub and mah boy is tweaking. A little at first, just some background whining and fidgeting which I thought would be quelled by the crayons and paper the servers brought us. Nope. Within minutes, things were worse and me and Mimi and Ruby and PJ were all in it. Each one of us offering our own brand of comfort but nothing worked. Even when his food arrived he was still randomly screeching, hitting me and crying. I knew he needed to eat, so I didn't want to leave. I poured another glass of wine from the bottle I ordered and dug in deep with my baby.

Eventually, his brain received the signal that glucose was flowing, that the hunger pangs were gone and his thirsty, thirsty self had more water available than he could possibly need. He ate. The girls and Mimi ate. I picked at their plates and had glass #3 of my Chilean Sauvignon Blanc at the ready.

Ruby, who although had been an insufferable jerk to her little sister the whole day, was ready and able to scoop up baby boy and carry him back up to our room as I settled the bill. Fragile P, took up Lincoln's real estate in my lap and seemed to relax, too. The unknown and Penelope are not friends and this trip could be potentially nerve-wracking for her. Because even though she was familiar with the town (we'd been to Plymouth a few times before) and some of my relatives, there was still a whole lot of mystery in her mind. Having me to herself for a moment was like a little alka seltzer for her sweet self.

When we were all reunited upstairs, it was time to suit up the young'uns to take a dip in the hotel pool. We had two adjoining rooms so I didn't always know where everyone was and I lost track of Ruby for a minute. When I found her, she was crying in one of the bathrooms. Ruby is taller than me and is built more like a woman than I am, so physically comforting her can be a little awkward for me. Like my arms don't go all the way around, I can't kiss the top of her head with out standing on my tip toes. But when I did hug her, she melted and cried harder.

"Why do people have to stare at him like that, mom?"

Ah, "other people". Those fuckers and their self-control and typically functioning brains.

Apparently on their way back to the room, Ruby had the unpleasant experience of seeing people see her brother. And when that happens, it feels awful. It feels like I-will-get-my-flamethrower-and-scorch-you-judgmental-bastards-to-the-hell-you-came-from.

"Aw, Rube, don't worry babe. In a few hours there will be an entire ARMY of family around our baby."

And as usual, I couldn't have been more right.

Tuesday, July 9, 2013

Tuesday Night

I may have just received the most excellent compliment of my entire life. My eldest, loveliest child said to me a little while ago: "Mama, I love hearing your voice. It makes me feel so safe."

This, after listening to me talk to her little sister about how it's OK if we diverge from a plan, take another way, make a different choice. That in doing so we don't get in trouble, we find ourselves.

The whole parenting thing really has its perks.

As I lie here in the dark with the littlest elf, Penelope by my side, the older, most delicious one is in the kitchen making Penelope's lunch for camp tomorrow and my dreamy, baby boy is asleep on his bedroom floor.

"Wanna get in the bed, baby?" I asked him after I had finished tonight's rendition of "Mother Says Goodnight To All Things".
"You sure?"
"Shhhhhh. Stop it."

So there he is. For now. I'll go in later and snuggle him into his pillow and watch him curl up like a potato bug when his body hits the coolness of his soft, soft sheets.

And here I am, blissed right the hell out to next week.

If I ever get a super power (like a for real, comic book, JJ Abrams blockbuster style one) I want it to be the ability for me to stop and soak in moments like this for long enough that I create change in my body on a cellular level. Long enough to form new synapses and pathways of self-respect and confidence. Long enough to love myself enough to make it real when I re-start time and wait, ever so patiently for the next magical moment with my crazy, wonderful children.

Tuesday, July 2, 2013

July 2, 2013

A chick of the most excellent variety told me today that my wedding story blog post was one of her most favorite pieces I've ever written; I'm going to counter that sentiment with my husband being the most excellent piece I've ever had.

Today is my 15th wedding anniversary. And while I know that in terms of the universe, that is a mere 10,000,000,000th of a millisecond (probably). But it terms of my life, it is everything. Everything.

I fell in love with this man as I was falling out of love with another. In the dark days of that break-up, I would construct elaborate and wonderful fantasies of me with the man that became my husband.

In my imaginings, he lived in LA, far away from NY and my mean and horrible, cheating bastard of a boyfriend. He had an apartment in the hills with floor to ceiling windows that offered panoramic views of the city below. He would hold me while I cried. Watch me drink myself to sleep and keep vigil till I stirred again. He drew me warm baths and made exquisite love to my broken spirt and nursed my love for him out of my bone marrow.

The reality? He held back. He watched from a distance. He was a gentleman and never got too close until he did. Until we kissed in Battery Park on a park bench (after many, many port wines at the Red Bench). Until we walked home clutching each other like we shared a lung and couldn't breathe any other way. Until we said goodbye that night and I told him (I remember the words, the mood, the atmosphere in his apartment like it was yesterday) that he was my heaven.

And then he gave me an incredible gift; the most beautiful necklace. He gave it to me after he told my split-secondly-ex-boyfriend (who also happened to be one of his very best friends in the world) that we were in love. He told him first before anyone else found out. He didn't ask for permission, he spoke the truth.

Six months later we were married. And we remain thusly. And gloriously and magically. And REALLY.

One night (afternoon?) after the latest round of ridiculously, incredible sex I said to him: "I can picture our fights right now; loud, passionate and intense." Uhm... yep. The fights burn more calories than my trips to the gym and sex... keeps... coming (to use a pretty great pun).

He was there to pull his children into the oxygen breathing world. He was there to wait it out till I could reasonably and comfortably and confidently get back in the saddle after I gave birth.

He was broken and held together with tears and snot and love when we got Lincoln's diagnosis.

He frets almost uncontrollably over the maturity of his first-born; her physical and emotional safety unmatched in his heart.

He KNOWS his children and he navigates their intricacies like an orchestra conductor.

And he loves me.

Broken and weird and strange and unwrapped, me.

I would be lost. I would go on, but I would wander and have no touchstone. The years have not all been bliss; but they have been ours and my charmed life would not exist without him.

Happy Anniversary, baby.

Friday, May 10, 2013

Warning: Nothing but griping here

Yesterday was not a good day. Yesterday I had difficulty managing the emotions and personalities of the people around me and that difficulty made for a fairly traumatic evening of arguing and tears and frustration.

Today, as I attempt to tease out exactly what was wrong with yesterday, a few things keep forcing themselves to the front of the line (and I'm going to make a list):

1. I was not listened to. I was asking for help from my managers and I did not get it (though I was repeatedly told I would)
2. I have co-workers who do their best to avoid work, causing more work for everyone else
3. Human beings (for the most part) will not endure even the slightest bit of pain or discomfort (emotional or physical) if they can help it

I am a nurse; a nurse in Labor & Delivery. My patients are all pregnant or very, very new mothers. It is life on the line at my job. It is serious as a fucking heart-attack except the one having the heart attack is also in labor. Do you know what I'm saying? I hate forced drama when humor isn't my goal but I need to express the extreme nature of my job! A job I do not take for granted, that I am very good at and that can not be treated like any other job that doesn't involve a shit load of blood (and shit) and about a bajillion potential complications.

Yesterday while we were short staffed by short sightedness I asked for help and I was met with  mostly tender, downturned mouths and eyes and sympathetic head-shaking.

I don't have print deadlines or cases to file or projects to document or conference calls to arrange or editing to do or any other really potentially fucking stressful duties during the day.

I HAVE TO KEEP MOTHERS AND BABIES ALIVE. I hate to draw a line in the sand and sound all ass-holey, but for fuckssake... For fuckssake, I can't be expected to do it alone and when the bosses are out to lunch (or leave early for Nurses Week Celebrations- oh the irony!) or co-workers disappear.

This is not a fun post to write. It's whiny. It's a bummer. it's also a bummer to feel that the people around you at your very important job have difficulty engaging. To watch caring people sit comfortably in their administrative roles while you wave frantically from your sinking ship. Weird how they seem to wave back, strange smiles on their faces.

This thing we do, this feel no pain thing. It's quite an insidious beast and we all use it so much so seamlessly that it's become as automatic as breathing. All the while extending its tendrils deeper and deeper into our psyches.

Patients don't want to feel pain. Nurses don't want to work hard and managers don't want to get involved. It's a cynical day here at Chez OBrien's L&D remote office. I may have had enough.

Saturday, April 20, 2013

Something I heard last night on NPR has been with me for the last 12 hours or so. Paraphrasing here: "The world now means that sometimes we have to shut down a whole city, don't give a damn about the economic impact and just get the job done."

I get it and I'm ok with it. I was "stuck" in NYC after 9/11 and it made perfect, logical sense that Boston was locked down, too.

What I don't get and what I don't want is for it to sound like some horrific hardship that this is our new normal (I dread the news today, but I'm drawn to it just the same). What I do want is for the last 36 hours in Boston to come across as: "Yeah, bitches! We will close down a whole fucking city LIKE THAT, and we will rock the shit out of it and you can all suck it!"

I  know pretty much next to nothing about these types of operations; no inside workings of the FBI or law enforcement in general, but my gut is telling me that the responders and their commanders in Boston need to be hailed and lauded and studied for the next time.

There will be a next time. There's just so much hate and so much access to information and materials that can be used to kill people. Evolution isn't always positive.

Saturday, March 9, 2013

Finding Focus

Lincoln was up at 6:30 this morning. My au pair starts at 7. This is what you would call a "First world, white lady" problem.

I have a lot of these. I need my roots dyed. I need tree work done on my property. I need interior design work done. I'm out of organic apples. I have to get more wine. I need to have three more appointments to finish work on a root canal. I don't have a pair of black, every day boots or a black purse.

I need to pay for my kid's day camp, my property taxes and the fee for my NEW au pair. Ruby's 13th birthday is coming up and I have to pay the deposits on all the reservations I made.

I've got to find new psychotherapists for my daughters because for varying reasons, the ones they have aren't effective.

I mean, am I fucking serious?

As I type on my macbook air, my kid playing with his ipad in the background, my other two kids lounging on the couch downstairs as they watch the flatscreen TV, am I really finding things to complain about?


I know I am living a charmed life. My children are alive and here on earth with me. My husband loves me and thinks I am as amazing as I wish I was. We both have jobs. We have friends...

So why the stresses and worries? Why can't I materialize any number of the patients I take care of every single day who have NOTHING in moments like these. The women who are addicts, living on a wing and a prayer, who have no family, no support, bad teeth, terrible health, violent spouses/parents/friends? The ones who know they won't be taking their babies home. The ones who don't know where their next meal will come from when they leave the hospital.

Gratefulness is a gift that I think I have. But the trappings of the life I am living prevent me from truly realizing it as often as I should. Perspective is hard to have when you can't see farther than the back of your own head; when life is so filled with things to do, we can't refocus our vision on things outside of ourselves.

I try. I really do. But right now I have to fill out camp forms and finish my coffee (with half and half and agave syrup) and put Lincoln's ipad on the charger and, and, and, and...

Saturday, March 2, 2013

My Cup Runneth Over (with wine, of course)

The great thing about life is that you never know when it's gonna whisk you off your feet and make sweet, sweet love to you.

I feel like I resist talking about the good stuff all the time because I don't want to come off as some fucking Pollyanna (which I am not). Sometimes I think that if I write down all the good, then I will lose my edge. Total bullshit, I know.

So. Anyway, the other night, after Penelope NAILED her opening performance as Cogsworth in Beauty and the Beast, we were weaving and wading through the pretty incredible crowd in the lobby signing autographs, when she looks up at me and says: "Mama, this is the BEST day of my life!" She was holding one of my hands in her two tiny ones and her eyes were sparkling out of her skull. It was a parenting moment I wanted to bottle up and take secret whiffs out of for the rest of my days.

I'm not gonna lie, hot husband and I had serious, serious doubts that she was going to be able to do it, to follow through and get on the damn stage, remember her cues, her lines, not faint, not fidget, not cry, not run off (or freeze) in absolute panic. I had 10mg of Inderal ready if I thought she'd need it.  I feel like my two other children disappeared during the last weeks of rehearsal. All eyes, energies, tactical plans were keenly focused on Penelope and her opening night.

And, well, that's when that stud, the universe, came in all smoldering and ready for action and laid. Shit. Down.

That little girl soared, she was electric and gracious and PROUD. And her mama is still rolling in the post-coital bliss.

I've thought for a long time that as the guardians of special children, we need to exploit their gifts and in dong so, see their deficits fade.

This can be tricky territory out in the world of IEP's and transition meetings and appropriate settings.  For the most part, the world wants our kids "table ready" and not stimming and hooting and whizzing and whoooing and crying and yelling and swearing. They want them to have clean fingernails all the time and be toilet trained before they go to school and be really good at wiping their own butts. You think I don't want that shit? But, that's just not my reality all of the time. I mean, I get some of those things some of the time. So instead I focus on what my children are really, really good at all the time. It's amazing what that little paradigm shift will do for you.

Penelope is a mimic. An awe inspiring mimic. She copies popular culture to a "T". Her emotional range is very well suited for the stage and her loosey-goosey, tiny frame makes her a fascinating figure to watch. Helllooooo! ACTING. A.C.T.I.N.G. I am totally hitching my wagon to that little girl's star.

Fragile X can kiss my sweet ass this weekend. 

Wednesday, February 27, 2013

Trying it on

So, you know, it wasn't a tumor... it was what I thought it was (what my rational brain thought it was, that is).

And I know this is nuts and in no way am I being flippant, but it was kind of fun thinking it *was* a tumor. Fun because I don't act like that. I don't hang my insecurities out to dry. They're not emblazoned on my t-shirts and hats, not baked into my chocolate chip cookies. That shit is hidden way. Usually.

But the other day, the day when my tooth and jaw hurt so much I wanted to crawl under the desk and make a nice, loving home with the dust balls and paperclips and paper scraps, I voiced my pain: Literally.

I was afraid of the pain and I wasn't afraid to say so. The creepy-crawlies came out of my gray matter to play and I led them right to the amusement park and gave them free passes. I was worried and I said so. It hurt and I said so. And about halfway through my "feelings parade", I started to feel different. I started to feel good, like a person who can talk about her icky bits outside of her bedroom and her therapist's office (and the this website). I felt connected to the people around me in a way that was very, very different than I had experienced before.

Maybe the pain helped break down my defenses? I mean, that's got to be it, right? Anyway, whatever it was, it was AWESOME.

And by 9:30 the next morning, when my horrific cavity/nerve infection/tooth pain was *properly* diagnosed, I was ready to hear the news. And I was ready for novocaine and drills and news about root-canals and tooth reconstruction.

I'm not about to say that this new suit of mine totally fits. I don't think I've suddenly morphed into  a person who shares too much. But I do think there's been a shift. I think I'm beginning to see, that for me, it's OK to loosen the fuck up sometimes; to unbutton a few buttons. To be a little bit more human.

Wednesday, January 23, 2013

Steady As We Go

Hiiiiiiiiii! Hi Universe! Hi, and thank you sooooooo much for punching me in the face yesterday. YOU. ROCK.

A few things: Now is the time for us to start noticing changes in Penelope. Changes that have the potential to shape the rest of her educational needs, emotional development and social integration.

These things are known, have been known and have been playing a kind of demonic hide & seek for some time in my mind (I picture eight or nine little girls dressed in ragged night-gowns, hair in ratty strands, skin pale and nearly translucent, bouncing in freakish rhythms with arms akimbo and knees out at odd angles waiting to pounce through the cellar door one at a time. Scary. It's scary). Hot husband said something so smart about her yesterday, he said: "We can't not be prepared, we have to be ready for what's coming so we're not able to just live in the moment with her, we have to be ready". So, you know, we wait. We live and love and we wait. And me? I'm always kinda a leeeetle bit worried.

Well, one of those freaky little bitches popped out of the door.

And the kick to the gut was fairly awful. The shock knocked us down. We had no words.

I probably need to come up with a better metaphor for this, but grief is one tricky, nasty beast. It hangs on, man. And yesterday I cried (not easy with my post-op eyes, I assure you) and cried and worried with my lovely husband if we'd be able to save Penelope from a life of loneliness and struggles because of her increasing inability to control her impulses, to get along, to play nice, to fit in. Will she isolate everyone to the point of well, isolation?

Falling behind in school I can handle, I can get tutors (and math can kiss my ass, anyway). Falling behind in life is unbearable. That is a heartbreak I have no framework for. So guess what? We're going to build one.

Late in the day yesterday, looking across the kitchen at my achingly handsome man nod in agreement as I said that we're so lucky that we have each other, that this kind of thing tears families apart and demolishes relationships and that is not our destiny, goddamnit; that was some beautiful shit. And then when he said that we'll do it, we'll help her, she will be ok. We'll all be fucking great; that was even better.

Take that universe. TAKE THAT.

Tuesday, January 22, 2013


Day 4 post-op. I'm still mostly on the couch, mostly drinking fluids & mostly feeling really, really lucky.

How acutely aware I have become of my good fortune these past several years! I don't want to be anyone or anywhere else (though, since I'm being all honest here, a big ole bag of money could present itself at any time; I wouldn't turn that shit down).

A few days ago I got plastic surgery. I elected to have a (very talented) doctor medicate me, numb me up and stick a laser into my eyes. I was talking the whole time, cracking jokes with the doc and his sicko surgical assist who both reminded me of my precious and demented co-workers. It was awesome.

For ever and ever I've hated my face; my eyes to be exact. Yes. HATED. I inherited huge under-eye fat pockets from my father and every year they grew and grew and grew and as far as I was concerned: They Took Over. They made me look like someone I wasn't. Made me look like I felt bad, tired, stressed, angry. And while some of those adjectives certainly apply to me from time to time, they are not WHO I AM every single minute of every single day of every single year.

I'm in therapy. I'm on anti-depressants. I've radically changed my diet. I drink tons of good, clean water and I'm a full-on grown up lady who's knocking on the door of her 43'rd birthday feeling like she deserves not just a metaphorical clean slate, but a fucking real deal ready for my close up clean slate.

So, I did it. I did it and I've been tingling with excitement and joy and gratefulness for the past 4 days. I know myself pretty well, and I know the feeling will last. That it will temper itself, spread out and take hold in all of my proximal and distal bits and get real good and comfy and hang out for a while.

I don't know that if I didn't have Lincoln and Penelope that I would be able to accept my life with this level of gusto and love. I don't know that I'd be able to feel this good and conscious of all that is right and truly amazing about my life. They saved me.

And last night, while my boy was soaking in the tub after an awesome play-date with kids from his school, an afternoon of raucous destructo-boy play at home, a nasty diaper change that showed me that a 4 year old can still shit up his back if he fucking feels like it and a horror show episode in the bathroom involving toilet paper and used tampons in some sort of Downton Abbey macabre tea party scene, I still felt lucky.

Tuesday, January 15, 2013

Do you hear what I hear?

Remember the scene in Shrek when Donkey gets fairy dust sprinkled on him and he floats into the air and he yells "I can fly!" and the castle guard yells "He can talk!"? Well, that's pretty much what's been going on around here for the past few weeks. Yes weeks. I wanted to be sure.

It started one morning when sweet magic man and his genotype. phenotype twin sister, PJ
were leaving the house for the bus stop. PJ looked up the stairs from the landing to her dad and said "bye dad! love you!" And not missing a step, not a beat, Mr. Lincoln belts out: "bye dad! love you!".

Cue full on daddy love melt down. I was at work but I got the text and the phone call and the pride and shock and wonder my hot husband relayed was palpable.

When Link was a little, little baby, before we knew anything about his genetic anomalies, Chris was the first one to make him laugh. A glorious sound never before heard in nature and every single night after for weeks and weeks and weeks, as soon as Chris got home from work, I'd present him with the baby and say (my excitement flowing like electric shocks) "do it again! make him laugh!".

And so it has been with this talking thing. Every moment that I see him since the last time seeing him, I just sit and listen to him talk and look at his perfect face and mouth forming words and sentences:
"Mama! You back!" He yells when I get home from work.
"Mama? Are you?" When he can't find me.
"Me eat." When he's hungry.
"Pelpees bus." When PJ's comes first.
"Wake up, baby!" Trying to rouse the cat.

And then all the naming of all the things that have ever been invented:
"book, book, book, book..."
"light, light, light, light..."
"belly, belly, belly, belly.."

His proclivity to perseverate on the words he's saying is almost as if he's convincing himself that he's right; that he's making sure he has it correct in his fantastic brain. For now, it's adorable. Later, when it turns into:
"fuck, fuck, fuck, fuck..."
"shit, shit, shit, shit..."
Probably not so adorable.

It's no secret that I have lamented his lack of verbal communication. That it is something that has made me so sad. That hearing his voice is a thing I have yearned for.

And now I have it! I got what I wanted AGAIN!