Almost 11/16. Almost 10

It was a weird day back then, too. I think about it a lot. The weather that day. The pop and gush of your amniotic fluid so early in the morning, busted by your bony self, set off almost 24 hours of wild winds and rain and sun and humidity and clouds.

Driving home today was the first time in my driving life that I was convinced I'd be in an accident. So many cars, so much snow. It was as if everyone was unprepared. Even me. The more I read about the storm I can't believe I made it home unscathed.

But I made it. I made it just like you did, my love. Your birth was incredibly hard. It was hard and I can cry thinking about everything I know about you now and if I had known then would I have done anything different. It's an impossible situation to get my head around.

10 years. You have been with me for 10 years.

You talk and walk (well, let's be honest: you gallop). You tease your sisters and dance to ROCK N ROLL, BABY!. You prefer to wear hoodies and soft pants and to eat macaroni and cheese.

I prefer to never imagine a world without you in it.

One of the greatest things about having you around is that I still get to see you do new things, new and sweet childlike things like reading books to yourself and creating imaginary games with your toys and new and wild grown up guy things like getting your own water and putting your shoes on the right feet the first time.

You make me slow down and marvel. You keep me on the edge of wonder and amazement.

You keep me terrified of the future.

10. Soon it will be 15, 20, 30. I'll be old when you're thirty and you'll be a young man. I'll be old and I hope I will have done enough to keep you happy and safe and able to navigate any storm on any day.

Happy Birthday, Lincoln. 

Mirror, Mirror

I was about 11 years old when I saw my reflection in the bathroom mirror and understood that, yes, I was pretty. The bathroom at 43 Williams Ave. was nice by the time I was 11: lots of light, a new vanity! Plus, I was getting boobs, my hair was dark, my eyes darker. I paid attention to the world around me and I knew what I was looking at and it was most definitely "pretty".

Trying to describe how I felt is so hard. "Relieved" is the closest I can come to the complete emotional state I was in once the sediment of the knowledge found its way into all the crevices of my psyche. When I was 11 years old, the male gaze had gripped me.

I don't remember the first time a man outside of my home compelled me to smile as soon as they saw me & noticed my face. Or they first time thy shared their unsolicited opinion that I was "good looking".  I have no idea how old I was when it all started or how many times the men charged with helping me grow up and be OK had made me uncomfortable in my own skin with their glances, their words. I had no idea how many times my grandmother had slapped me for being "uppity", no idea how many times my other grandmother ignored me and my face entirely, no idea how many times my drunk aunt spat in my face because I JUST THINK I'M BETTER THAN HER...

But suddenly it was happening. And I apologized and complied.

And then it got boring; all that answering politely and being gracious.

And then it got taxing.

And then it got exhausting.

And then there was no more relief in what I saw in the mirror.

When I was 12, my cousin groped me while I pretended to be asleep on the couch.

In the 8th grade I was mocked during class because I walked with my head down and I swung my arms as I navigated the hallways. It was a charades type game and everyone guessed it was me immediately.  By the 8th grade I had been in 5 schools.

By the 8th grade I had been conditioned to hide my face so it would not be commented on. At 14 years old I knew that I didn't like being asked to smile, to change my face. At 14 years old I was shamed for trying to be invisible.

When I was 16 I was kicked out of my house by my stepfather for having a boyfriend.

In my freshman year of college, the guy I was dating smashed my head into the driver's side window of his car (he was drunk, I had to drive) and slammed that same door on my leg as I tried to get away.  I didn't tell him I loved him enough that night.

When I was in my 20's a different cousin joked about how cool and fine and normal it would be for us to fuck.

About a month ago a man in the parking lot of my local grocery store called me a bitch because I didn't respond to his command for me to "hey, babe, smile".

Today at my job where I work with a team of people charged with the health and well being of young adults & teenagers, I was asked within a matter of minutes by two different men from two different generations to alter the look on my face.

Now it makes me angry.

I'm 48 years old. It's still happening. And I still want to be invisible.

But it is so much more complicated than that!

I want to be pretty (do I?)! I like being pretty (do I?)!

I have no fucking idea.

Several years ago I had a surgical procedure called a blepharoplasty to eliminate the puffy bags under my eyes. I spend hundreds of dollars a year on high-end skincare products. I pluck my eyebrows and my chin hairs and remove my moustache. I use a magnifying mirror AND reading glasses for inspections.

My face is the scaffolding of my self-image, my self worth and if I don't take care of it, it's going to collapse.

Do I want to be invisible or not? This is not a question I can answer.

Nothing I have accomplished in my life can fend off the despair I experience when someone, some man, comments on the state of my face in the pejorative. NOTHING.

You've heard of RBF? Resting Bitch Face? The Live Love Laugh meme of Misogyny? Fuck RBF. Fuck how funny you all think it is, how cute, how bold, how boss-babe, how quirky. It's insulting, full stop.

If society thought RBF was cool then it wouldn't be used against women who have it as an obvious barrier to intrusive comments.

If society thought  RBF was acceptable, then it wouldn't be used as a slur behind the backs of the women who have been conditioned to not draw attention to themselves.

See, we stop smiling because we don't want men to notice us. But when we stop smiling, men ask us to smile because it makes them feel better when they look at us. IT NEVER ENDS.

Today ended in the worst possible way. I left my office a plastic grocery bag filled with broken glass.
Today some miserable things crystalized for me and at this point trying to separate the logic from the emotion is like doing embroidery in reverse.

Today I am grateful for good wine.

Today I am grateful for a son who has no concept of being sexist and predatory. I am grateful for a husband who fights back his urge to fight because he knows this is my battle. I am grateful for daughters who know I will do whatever I can to blind the male gaze. I am grateful for my friends who rage right along with me and I am grateful for my job and the privilege I have to help my young colleagues and even younger students learn that they are more than what other people see.

Chester Bennington: March 20, 1976 – July 20, 2017

All I wanna do
Is trade this life for something new
Holding on to what I haven't got



Linkin Park's "Waiting For The End" was the anthem that chose me to when my own sweet Lincoln was diagnosed with Fragile X Syndrome.

It was on repeat for a million years while I sorted out what in the world had happened to my world. All the kids recognize the song still just from the first few opening bars. It's part of all of us.

I'd loved Linkin Park for a while before that. They are the kind of band I would have eaten alive as a kid. They got to me.

I've mentioned before that my love of live music was re-ignited with Ruby's match strike. Together we see 2-3 shows a year and a few more without each other. We laugh and dance and cry (and sometimes puke into our bags of popcorn on the train ride home but that's another story for another day *spoiler* IT WASN'T RUBY) and roll around in endorphins for days after.

The incredible Ruby has been earning money as of late by selling and commissioning her art. Holy shit. My kid is a working artist at 17. WHOA.  And with one of her paychecks she bought her mama tickets to see Blinkin Park on 7/28/2017.

I was finally gonna see them live. See and feel Chester sing that song. I couldn't wait to cry and yell it out with him at the top of my lungs.

How deeply do you need to feel the pain to end your life with 6 kids? How numb do you have to be to end your life with so many lives in love with you?

Rest easy, Chester. Peace.

So many things were left unsaid, It's hard to let you go

I'm 47. I Despise My Uterus.

I've been at odds with my uterus for some time now. 

When I was eleven she unleashed a Cecil B. DeMille worthy torrent of blood into my gauchos as I sat in my 5th grade seat. I walked home with a long sleeved shirt tied around my waist that I borrowed from my well meaning, but utterly freaked out teacher (Why didn't she get a pad from the nurse? Get some sweats from the lost and found? What's the statute of limitations on that investigation?). Pretty sure I never returned the shirt.

Over the next intervening 36 years, me and my girl have had considerable beef. I respect her purpose but even in carrying my 3 babies to term she caused me some SHIT: 2 occiput posterior presentations (broken tail bone BOTH TIMES) and the piss poor form she displayed by not being able to hold it together well enough to fully dislodge my low tone, 9.5 pound baby boy. I am forever indebted to my midwife, Ms. Sandra Fields, for reaching her knowing hands up into my vagina to drag him out of his saggy, defeated womb.

It has given me periods so strong and abundant that they wash ultra OB tampons out like bloated squirrels from a storm drain in a downpour. Cramps? More like the bitch is trying to claw its way out of my body.

For 10 years I've wanted a hysterectomy. Sometimes on slow days working L&D, I'd jokingly mention to any surgeon within earshot that both OR's were free and the anesthesiologist was available (only I wasn't joking). 

My OB/GYNs were cool. They tried. I tried. Blood tests, hormone/birth control pills, Lexapro (for the depression it was causing me), endometrial biopsies to rule out cancer- these are biopsies that are done in the office without anesthesia wherein a device is inserted into the vagina, through the (un-dilated) cervix to scrape out cells on the walls of the uterus. Did you catch that? No anesthesia. Scrape cells. The results were always normal, normal, normal. The bleeding in and of itself wasn't enough of a reason to do anything more. I was in my early 40's, had a new baby... why not just wait it out? Oh. My. God.

I've ruined or permanently disfigured underwear, pants, shorts, skirts, dresses, sheets, quilts, duvets & mattresses. I've traumatized dates, gone without sex. I've been laughed at and embarrassed all because of my monumental, psychotic periods.

My abnormal uterine bleeding has a name: Menorrhagia. Pretty, isn't it? Sounds like the Greek name to that gorgeous purple flowering shrub your mother in law has in the garden. Menorrhagia!?Yes! I'd LOVE ONE for the side yard!

Next week I'm getting a uterine ablation and I don't think it's possible for me to adequately describe the joy I feel in typing those words. Next week, under sedation, I will have a device inserted through my (dilated) cervix that has netting attached to it. The device will emit a radio frequency to the netting and basically fry the hell out of my endometrium and (hope, hope) greatly reduce (if not end all together) my voracious monthly bleeding.

In my years of begging for someone to surgically remove my uterus, an ablation wasn't an option I was even willing to consider. Why did I have to do this first? Was always my question.I 'm not having any more kids & my uterus isn't at all useful to me. Keep the ovaries, tubes & cervix, the parts that actually help this lady out. But for the love of cheese popcorn and Sancerre, TAKE MY UTERUS, PLEASE.

Turns out, it doesn't work that way, women! So simmer down and quit asking!

Asking for an elective hysterectomy is not met with serious consideration by any OB/GYN of merit. The last good numbers from the CDC are from 2006-2010 and they say that 600,000 hysterectomies are performed each year; second only to cesarean sections for reproductive procedures in women. 

The numbers don't break down partial procedures (uterus only), complete (ovaries, cervix) or radical (when some of the vagina is removed) or if they were done for fibroid issues or cancer treatment. 

The disdain I feel for my pear-shaped blood hut is irrational. It's removal would forever change the structure of my internal organs. Complications like vaginal or bladder prolapse could happen as well as the possible snags that could occur during any major surgical procedure. 

For now, I have high hopes. 

I am hopeful the ablation will give me back some control. I'm hopeful that I won't be living at the mercy of a 17-21 day menstrual cycle with 6-9 day long periods. I am hopeful that I'll get half of my life back; that I will be less angry at my body. And if it doesn't work? If after several months it is revealed she is still a cantankerous bitch? I just may get my wish and IF that happens I'm freeze-drying her and making her into a belt buckle.

April 13th: 2000-2017

Hello Rubith (Google kept wanting to autocorrect that to 'rubbish'. Do you know them?).

For your whole entire life I have been perfectly content with the exact age and person you were at the time. Never wanted more or less than the 'you' I got in the moment.

But guess what? Time is moving and I am getting older and I think more and more about memories and the space they are created in. I suddenly feel aware of time. It is a physical thing I make an effort to feel *time* on my skin, in my bones. I want to be surrounded by it like a grape suspended in some gracefully elegant jello mold. The past is gone! Holy shit. I get it now and I get that I can't get it back.

I am finally, 17 years later, wanting time to stop.

Make no mistake, child. I live and breathe your every move.

I think on every single conversation, text, every meal we share, lipstick we buy,  concert we go to, fight we have (they're all your fault), choice we contemplate, joke we make, kid/teacher/random human we roast. And I savor these things like the gin and tonic I have tucked into my side as I write this.

The other day I told you that the only reason I know a kid is a good kid is because I compare them to you. Ruby, the power you wield in our family and in your world... you have no idea. From the time you were dropping notes from the second floor to remind me of my deficiencies, you have been a purveyor of justice and truth. We all (and I mean ALL) look to you as a beacon of "wtf am I doing?" and "how can I do it better". You are good. And the only thing I want to do is relish, capture, enshrine in volcanic ash for ever and ever and ever, your goodness.

I am so proud that you are my child. That you are an artist. That you feel and see the world through the eyes of a fierce and genuine feminist. That you love your siblings and are willing to defend and care for them to the ends of the earth. Gah! I am like the annoying geese in our backyard right now! So puffed up and proud and blinded by love (except that you know I'm right, I'm way smarter than the geese. Let's just clear that up).

You're 17 years old. 17. Why does that seem so monumental? I tried to explain to you the other day why I feel this way but I'm pretty sure I wasn't able to articulate it well enough because I'm still not as smart as I think I am (this is not a problem you will ever have, by the way). 17 is a number that is thick in my mouth when I say it. It sounds round and brown and rich in my ears. It is a determined and steady current in front of my eyes; rolling along like the wave machine I was mesmerized by at the New England Aquarium when I was a kid.

I'm worried for the first time since you were born that I will miss parts of your life. Why I didn't realize that till now is really fucking embarrassing, I must admit.

Time. 17 years of it have flashed like a 4th of July sparkler. I want more sparklers. I want more matches.

Happy Birthday, sweet child. Happy Birthday.

On Loneliness & Broken Hearts & Perspective

I'm hopeful to the point of exhaustion. I look for the bright side till I'm gasping for air. I try to see the best even if it means tearing my eyes out.

I'm also an asshole, a loud mouth and a know-it-all.

I am sure of the former because I feel it; the latter is true because I've been told it is.

Can you see the thick mark that bi-sects me from tip to toe making me an imperfect mess that doesn't always make sense? Is it obvious? Tell me. And tell me before you want to punch me in the face with it. Tell me before you're so angry it's the beginning, middle and end of the whole conversation. Tell me when I still have time to try and fix it.

Or don't. Honestly. My cup runneth over with the tired, overwhelmed, nauseating gurglings these types of News Reports give me.  Let's all agree right now that if you have bad feelings for me, you need to keep them to yourself. You've had your chance.

And to the point, if you have ever felt the need to and have acted on the impulse to bombard me with my horrible self and feed me a nice, steamy plate of shit, I want you to know that it tastes terrible. I also want you to know that if you didn't turn that magnifying glass on yourself and check out your own blackheads, zits and imperfections, that you can go fuck yourself.

Broken hearts lead to loneliness leads to loathing leads to reflection leads to the possibility of (maybe) love.  For me, that special and stunning delivery of love comes in the perfect size for my family. My hot husband, my kids. My one and only's.

The upside of heartbreak? It puts me in the blocks when I need to sprint to the side of my beloveds when they've been struck down and pounded in the chest. But as much as it gives an outline of empathy, my pain is a tipped over kiddy pool in the face of a Tsunami when one of my kids is hurting.

My hopefulness loses air, my bright side is a total eclipse and I can't see anything but rage and red and wonder if Amazon Prime can get a flame-thrower to me in 24 hours.

And it's always the littlest elf whose broken heart breaks mine hardest. She needs more care than the rest of us. She is the synchronized swimmer whose legs never stop keeping her perfect torso from showing any signs of weakness or hurt. When she fell apart last night I wanted to kill people. She slept next to me like a ghost, tiny and curled and so still.

I cried on the way to work. I cried all day. I figured out a plan to help her get through the mess of pain and stress. I screamed in the car on my way home and by the time her bus dropped her off I felt ready-ish to guide her back to a safe, unbroken place.

So when she came up the stairs and into the living room I announced: I have a plan! For what? She says... Uhm, well, how are you? Are you ok? Yeah. I'm hungry, too!

Struck! I was smashed in the mouth with her ability to adapt. Her day brought her serenity while mine brought more anguish until I figured out murder wasn't really an option and I needed to get rational.

And she has been bouncing around the damn house ever since.

She's gonna figure it out. She will keep kicking those legs and she'll stay above water.

And I will try to remember that she is not me.

Forever indebted to the universe that she is not me.

11/16/08-11/16/16

Hi boy. Sweet, sweet boy.

Eight. We have all made it here safe and sound, my love and there are some things I want to tell you:

I want you to know that I don't cry about your diagnosis any more. I want you to know that I cry about regular mom shit now. Shit like how you notice when you are getting bullied. I cry when you're disappointed and when you're happy. I cry for you like you are a regular damn kid! It's incredible!

Of course, you aren't a regular damn kid, though are you? You're magic, aren't you?  You can't hide it. You and your Jack-O-Lantern grin, all lit from the inside and glowing like a super moon. You can't hide your magic. It leaks out and spills across the floor, engulfing everyone around you like an oil-slick of love.

Lincoln, listen to me: You came to us and you saved our lives. You leave the room for 5 seconds and your return feels like CHRISTMAS MORNING WHEN I WAS 6. When you laugh, we fill up on it. You are the buffet of life, my sweet son.

The day you were born was a struggle. I had impenetrable oceans to cross those many, many hours. You hurt me. Searing, muscle melting pain that I remember agonizing over on the left side of my pelvis, right where your head and shoulder and elbow were fighting for dominance. Which part of you would we get to see first? And when I realized you couldn't help yourself, that the pain you were giving me was your only way to say HEY MAMA! GET ME OUT OF HERE! I did everything I could to get it done for the two of us.

All the hands were there to pull you out because you couldn't help yourself. We got you here. And almost as a gift of thanks, you are the spectacular human being that reminds us every day that we won. We won, Lincoln! We get to have you!

Eight years old. You dance now. You talk back to me & you give me the silent treatment. You tell a mean knock/knock joke and you think you know how to wash the dishes.

Eight years old and that means I can't write about your hygiene habits anymore. You're big. I don't want you to be embarrassed when you read this, because I think that's gonna happen really soon, too.

Happy Birthday xoxo

Not That You Asked

Why do I do it?

I could (theoretically) very easily stick to pics of my kids, self-deprecating anecdotes, love notes to my hot-husband and bragging on my beloveds. But (in reality) I can't and neither should you.

Facebook is many things to many people and one of the things it is to me is a platform where I can address issues of social conscience and be sure to reach at least a few hundred people with my thoughts and ideas and opinions.

I've laid my privilege out there many times but again, for those who may have forgotten: I'm a white, middle-class, heterosexual, married woman living comfortably and without much personal strife in New York.

Why can't I keep my mouth shut about Race, Sex, Gender? Because I'm a white, middle-class, heterosexual, married woman living comfortably and without much personal strife in New York.

A huge part of my privilege (and maybe yours, too) is that I can put myself out there. I can be messy and mouthy and rage-y because I already have access. My voice isn't too much of an affront because I'm already accepted. I can be confrontational because my human condition isn't controversial.

There is a duty. That's why I do it. I choose to see the need to agitate and annoy. To be provocative with the sole purpose to shift just one, just a tad to the side of being "just".

When people get upset and offended when their pulse rates amp up, when they see a little red or maybe their vision gets blurred, when people are faced with something they vehemently disagree with, there is an opportunity there. An opportunity to reach in, grab onto the controversy and shake it up and show all the sides. When I get called a "Liberal", "ignorant", "uninformed",  "WRONG" I know I'm illuminating something that's been in the dark for probably a very long time.

I'm messy, scrappy. Totally unpolished. I've made (and will continue to make) a ton of mistakes when handling fragile things like people's strongly held prejudices and throughout my life I've lost friends over my approach. But I've kept the ones I need and I've made new ones along the way.

I could play it safe and be GRATEFUL FOR WHAT I HAVE.  I could be quiet AND REALIZE ALL THE PROGRESS ' BEEN MADE.  I could sit still and STOP FINDING PROBLEMS WHERE THERE AREN'T ANY.

But why in the world would I do that? Why would any of us?

August 19th, 2016: Move in Time Between 12-4PM

What if the next 2 days weren't just blocks on the calendar, strung together just to be gotten through and over with? What if the next few days are... are so much more than you are ready for?

What if they're signaling the denouement of your eldest child's trip through your personally curated universe? What if the sting of the coming days that you have been feeling every detail of like prickled skin is so acutely painful because you are commemorating the fact that your second most trusted companion on planet earth is flying the coop?

Ruby. Oh, Ruby!

I wasn't a great mom in the beginning.
(This is a hotly and emotionally debated pov around here. Hot husband wants me to feel good, be good, have good all the time and that is why I will continue to keep him around. However, this is my story, and my feels are my feels on this one.)

Well, I was fucking killer as the mom of an infant. I'll right hand that to anyone's god. But the years that stick in the head, the guts, the marrow? The years I was mean and mad and not good? Those are the years that make my innards churn. So busy figuring out motherhood, adulthood. Trying not to lose ground. Struggling to be who I was maybe supposed to be at some point... It hurts to type it. I yelled a lot and shut her out. Wouldn't let her help, got mad at her when I did let her...

And because of the mothering she got, she matured seemingly overnight. She was the avocado on the counter that's hard as a rock for days and days and days until it's suddenly to soft to eat. As a consequence she's always done things before I was ready to hear them, to own them.

When she was 16 months she weaned herself. Boobie all gone! No! Not it's not! It's right here!! It's still right here!

When she was almost 2 she told me that she was a good girl and that I was upset because of myself.

When she was 3 she would drop notes down from the second story of the house to tell me where my areas of improvement could be found.

When she was 4 she wanted to and went to real-school-not-play-school-mama.

When she was 5 she had been in school for a year and developed existential depression and she said more times than I can remember that she was "the most differentest person in the whole world".

When she was 6 she was put in the second grade and chastised for not believing in God. Told she'd go to hell. She said to them that she wasn't sure and wasn't it ok to not be sure?

When she was 8 no one showed up for her birthday party.

When she was 9 she was punched on the school bus.

When she was 10 I homeschooled her and I tried to reconnect with her and erase some of the shit stains.

You get the picture? It wasn't serendipitous. It was messy. It wasn't always magical.

Everything I ever said about everything she ever said or did or wrote or made was interspersed with anxiety and worry and fear.

We didn't openly and passionately fall in love until she was 13. And when it's at 13, it's too late to not have scars. It's too late to be without pain. But it has been GLORIOUS. Blood and entrails and all. Her humor is wicked. Her taste in music fascinates me. She tells me stuff. She lets me in.

Mom of infant. Mom of teenager. Those are my gold medal rounds with Ruby.

When she was still just 15 years old she was accepted to university because she is an extraordinarily gifted artist

And now, at barely 16 it's time to say goodbye.

Stop it. I'm not being dramatic. I know her.

She loves me and I can't take a breath without at least one beat of my pulse in her exact direction.

I love her and she hangs on everything I say like so many vines. And now, wielding a machete, razor sharp and smarter than I'll ever be, she's slashing them.

This is a broken heart I can't comprehend.

Luckily for me, I am a wholly inappropriate cryer and am therefore unlikely to lose my shit in her dorm room. The ride home? The day after? Help me, my friends because I'm going to be a disaster.

Mr. Mike Nist, Ladies & Gentlemen

Hey, big man... What the hell? I never got to say goodbye, you know?

Do you remember the Yankee game when (for once) I wasn't drowning in beer? You asked us if we wanted to go to a bar after and I said "no" and that grin, that Mikey Grin spread across your mug and you go: I KNEW IT! YOU'RE PREGNANT! It was so much fun to share that moment with you and your blustering exuberance some 17 years ago.

Do you remember the email you sent Chris after we got Lincoln's diagnosis? Where you talked to him, to me, about our "new normal"?  Well, I still see those words on the screen and I think about how peaceful and welcoming you were from the start. No judgment from Mikey. No fear. Love.

Do you remember how many times I lost the party? I never took home that fucking trophy.

Do you remember how much I loved to cook something new for you? The complete and utter joy on your face when I'd unveil a dish! I would jones for pool parties just so I could make you food and you  could swoon over it!  You'd rub your hands together right under your chin in anticipation of whatever was under the foil covering the still hot dish, that same huge grin. (I still have the Country Meatloaf recipe you emailed to me 6 years ago. Haven't made it yet. Sorry)

Do you remember the last minute Christmas Eve dinner at our house when your mom and her husband came? It is legend around here! It's never been topped and you know I've tried. Of course the food and the wine... but the mood! The laughing! And of course, the love.

Do you remember how you'd tilt your head and smile when you heard something you really liked? Like when we told you "Penelope"'s name?

Do you remember always being the one with the biggest laugh? The longest hug?

I do. I remember. I remember all of it and more.

What in the world is going to happen without you in the world?

We spent hours last night looking through pictures trying to find ones with you in them... truth is, I was looking for the ONE PICTURE I will always have in my mind: You, with tiny, baby Ruby on your lap pretending to feed her strawberry short-cake. The devilish look on your face! You held that fork precariously close to her sweet baby lips and I swear to god you probably gave her some! God, I hope you gave her some...

Oh, Mikey. This is simply the worst. Good-bye, big man. I love you so.

Do No Harm (& Don't Be A Dick)

Lincoln is going through some stuff. Some stuff that's unsettling and scary for me and the hot husband. His health, his education, these things are at risk and instead of reaching out to the experts, I am seeking comfort and assistance from human beings.

In some wonderfully rare cases, these attributes exist in the same person and WHOOO BOYY! Is that a double-dipped-waffle-cone-chocolate-ice-cream treat! But, you know, usually it doesn't. Usually that along the way to "expert" the "human" disappears and what's left if pretty much a bummer.

I used to think that I didn't need doctors or teachers to be my friend, to be friendly, that I just needed them to do their job and do it well. I'm re-thinking that now. No, I have with absolute certainty re-thought that.

When I gestated and birthed my sweet guy I was no expert on who he was, who he was meant to be. I simply loved him and learned from him by watching and waiting and inferring and interpreting and listening and by LOVING him, I found out what I was capable of in terms of taking care of him. Easy! I parented who was presented to me!

And to further that point: Teach who is presented to you, Heal who is presented to you. Do not force things, look from all angles, create a new space if need be (if the existing one is too narrow or too broad), turn the pyramid upside-down and open up!

Down the hall, as I type, Link is playing with his dad.

He is laughing so hard with his dad right in this moment! Their voices are careening down the hall, all snorts and giggles punctuated with "I love you!s". The endorphins and feelings of confidence and security that are flowing through his wee, little body are the ultimate medicine, the greatest therapy. We weren't trained for this, but we are the best at it.

Yet, time and time again we must defer to the "experts" for what's "best".  We wait for meetings and approvals and appointments. We wait for data and openings.  Treatment plans and educational opportunities that are doled out by the experts who don't know or can't see or won't understand the boy their loss of humanity is affecting.

A tad dramatic? No. Not even one fucking dust speck of drama.

So while the clock ticks and time passes, we drown the blond boy of wonder and grace in goodness and humanness. We get him to laugh and smile and hug and kiss and share and joke from the second he wakes from his disastrous, troubled sleep till his glorious, fluffy head needs a pillow under it again. And so on and so on and so on until some expert, somewhere finds themselves under all their expertness and decides to be a human being again.

Be good.

Shake Me Down

I have these two friends. I don't see either one very much these days for various reasons but mostly due to proximity. Because I fucking love them both for many delicious morsels of truth you understand only if you have friends who connected with you like a lightening bolt. Entered you with a line so direct to your hear & soul that you don't question its value for a second. You simply hold in the fire and let the bond seal till forever and ever amen.

GODDAMNIT. WHY?

I don't hear shitty news and think "Let me hold my children tighter!" I don't think "I need to live every single day like it's my last! I hear shitty news and I am all DAMN THIS BULLSHIT TO HELL AND BACK YOU LOUSY MOTHERFUCKERS.

My life is already a soaking sponge with almost zero capacity for even one more drop of the vast and aching reality of someone else's broken pipes. I have privilege, but not that kind. I can't put aside my day to day and shift gears, to alert the captain we must change course and preserve every second of every moment of every minute of every hour and be thankful FOR WHAT I HAVE.

I guess I'm lousy? I can't get out of my own way enough to be more than angry that too many of my too wonderful friends are sick and their lives and their kid's lives... their fucking kids...

I have been thinking a lot about how many mental illnesses like depression, anxiety & mood disorders are most prevalent in the United States than almost anywhere else in the world (France, The Netherlands and New Zealand are close behind). How this supposed land of the free, land of plenty, place to follow your dreams is filled to its gills with people (like me) who are so burdened by their own problems, they can't possibly be asked to assist with any one else's. I've been thinking, wondering, if this is why we also have barely %50 of our population who consider themselves to be healthy emotionally and able to feel empathy towards others? That our personal psychic overload makes it near impossible to connect on a deep, important level with the people around us and get out of own ways?

There's so much I want to do! I want to make food and raise money and awareness of the day to day hell it can be to live with a shit diagnosis. I want to sit with my friends and their compadres and tell them jokes and assess their picc lines and change their dressings. I want to take their kids shopping & skiing and do puzzles with them (I happen to be amazing at this, btw). But I have my own shit, man! I have my own shit...

What is that? Is that selfishness? I don't know...

Some things about me that I do know: I respond really well to direct requests. I love medical questions and I'm pretty smart and I have even smarter friends. I'm funny and I will make you laugh.

And, and, and, and even though I don't (can't? won't?) shove my own personal ice berg in another direction even the tiniest bit to accommodate a change in my worldview, I have love. And patience. And tears. And fierce, fierce protectiveness of what is right and what should be and I will defend you against all comers. I will rage (in my world) for you. For the two of you most especially xoxo

(here are the lyrics I reference in my title. It's a good song. It's hopeful in a fucked up kinda way. By a band called Cage The Elephant)

Shake me down,
Not a lot of people left around,
Who knows now,
Softly laying on the ground, ooooh
Not a lot people left around, ooooh. ooooh

In my life, I have seen,
People walk into the sea,
Just to find memories,
Plagued by constant misery,
Their eyes cast down,
Fixed upon the ground,
Their eyes cast down

I'll keep my eyes fixed on the sun

Shake me down,
Cut my hair on a silver cloud,
Broken sound,
Softly laying on the ground, ooooh
Not a lot people left around, ooooh, ooooh

In my past, bittersweet,
There's no love between the sheets,
Taste the blood, broken dreams,
Lonely times indeed,
With eyes cast down,
Fixed upon the ground,
Eyes cast down

I'll keep my eyes fixed on the sun

Turn back now its time for me to let go,
Way down had to find a place to lay low,
Lampshade turned around into a light post

Walk around the corner,
Never saw it coming still,
I try to make a move,
It almost stopped me from belief,
I don't wanna know the future,
But I'm like rolling thunder,

Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,

I'll keep my eyes fixed on the-
I'll keep my eyes fixed on the-
I'll keep my eyes fixed on the sun

Shake me down,
Not a lot of people left around, ooooh, ooooh

The Boy. (Can I Still Call Him Baby?)

We are sitting here sharing a piece of birthday cake. It's good. It's chocolate and pudding-y and sweet and it was exactly what my boy wanted for his birthday party (which was a few days ago.) An epic rager that had hot husband and I clorox wiping most of the house well into Saturday night and I'm sure I'll be finding Playdoh chips meshed with carpet fibers till I'm 70. I'm exhausted and leaden and kind of out of it today (his actual birthday) but every time he enters the room and one of us says "happy birthday! to him, he says: "fank you!" and I get a little bit lighter

And the cake! It had humpback whales on it. Whales that were sculpted from modeling chocolate and meticulously carved. He loved it! Even though he couldn't blow out the candles or deal with 20  or so booming (off key) voices singing "Happy Birthday" to him, the cake won him back to the table and right now it has him deliciously smudged in pale blue icing and dark brown crumbs.

My son, Mr. Lincoln Anthony Sgueglia, has been born many times for me. The first time, when I found out there was a new little someone cooking in my belly. The second, the day he was came out of that belly and joined his air breathing family. The third, the day he was diagnosed. The fourth, the moment the grief subsided and I let go of the son I thought I was going to raise... and on and on and on and on and on.  And this is how it goes, isn't it? We are spectators to our children's evolution, aren't we? Often active participants, but equally as often, nail-biting side-liners waiting to see what will happen next.  And when SOMETHING HAPPENS I am there to receive the newly transformed being in front of me.

Do you know him, my son? My boy? He is spectacular. He gets mad at me and tells me "I can't love you mom". He makes up with me and says "Mom! I love you so much!".  He calls his dad "My man!".  He prefers soft pants to jeans, inside to outside, his grandpa to ANYONE, pasta to protein (except for eggs and hot dogs). He won't use nick-names. Lincoln will always call you "Christopher", "Penelope", "Adelaide"; there will be no shortcuts.  He deals in absolutes. He has no ego.  He loves big boys, dogs, sharks, whales, skittles, bubble baths and Toy Story. He doesn't like liquid medicine but he'll swallow pills.

The 7 year old guy I have living in my house right now may be my most favorite iteration of LINCOLN ANTHONY SGUEGLIA to date. He's sharp and sweet and very, very much in love with me. He is Christmas in July every day of the week and today, November 16th, 2015 I wish him a very, very, very, very, very happy birthday.

Why I Stopped Worrying and Learned to Love My Kid's iPhone

For your consideration, I would like to offer up the following:

Can we please not blame teens for living in the world we created for them? Can we stop with the trite "when I was your age I had one toy and it was called OUTSIDE" statements?

If you look even a little bit beyond the surface you will see an entire generation of alternative thinkers, skilled typists, talented researchers & adept self-soothers. The exact opposite of what is usually spouted off about 12-20 year olds-- that they are lazy, can't get their faces out of their phones, that they don't know how to interact socially.

I live with two people within that population and based on my anecdotal evidence they are outgoing & funny. Opinionated and proud. And they also happen to be on their devices ALL THE TIME they aren't doing homework, sports, drawing.

And when their friends come over, I witness the same behavior. Yet they all appear to be healthy, happy and well adjusted.

A theory I have on this: Social media is an outlet for them, not the end game. Kids who in past generations who may have been to shy to interact well can use platforms like SnapChat, Instagram and Twitter to expose their very cool, very unique personalities.  Smart phones and tablets and my blessed internet allow them to investigate interests that their parents may have not had the resources to provide access to, so they get "sucked in" and guess what? They learn stuff! Amazing stuff! And they talk about it! At dinner! With their families!

Downsides abound. In everything. But that's where we come in. As guides, as parents and mentors. We check the devices and see what they're looking at,  set up ground rules for what can and can't, should and shouldn't be posted on sites open to the entire www. We remind them that reading the Dictionary is the ultimate nerd pastime, that if you finally want to beat your mother at Scrabble, you'd better read a book or two. We meet them where they are and start conversations about the things they are watching, seeing. We do our job and when that balance happens, we can stop seeing a bunch of anti social, rude, disconnected teenagers.

I cringe and then I get sad every time I see and hear someone from my generation negate and vilify the world we have offered up for our kids. It's in an incredibly shocking slap in the face to them, to us!

Smartphones are not making our children rude little introverts. The internet is not robbing away childhoods right before our very eyes. With even the slightest shift of gaze, it's obvious the exact opposite is happening.

Technology is a gift, an effect of our brain's continuing evolution that has had overwhelming positive affects on our world. Why, when it comes to our kids do we hold it, them hostage?

Catch You On the Flip Side

I have been in this space long enough to finally identify what's happening to me. I am contracting. I am the opposite of expanding. I am the inward breath of a lung. The down flutter of the deeply colored butterfly wings I spy attached to the insects sipping nectar from the Zinnias out my window. I am the suck of the sweet babe on its mama's breast.

And now that I know what it is, I know how long I could be like this. Years, probably.

Everything is inward. Not so much a collapsing, but a gentle pressing.  If I stop and feel, I can feel it.  I can feel my whole self being evenly  p   u   s   h   e   d   in  on every millimeter of my body It's drastic! It's change!

A very smart woman who I love to death and emulate as much as I can used to have a note on her fridge (is it still there?) that said: Behavior = Need. It was put there when we had really little kids who were really difficult to decode and it was this concrete reminder that everything is happening because something else is happening. Whoa, right? So because of me and who and where I am right now and what I need, my behavior is changing.

So be it.  (I love that fucking phrase! SO BE IT)

I remember being like this only one or two other times in my adult life and I'm fairly certain that's why I didn't notice sooner.

While I am contracting and pulling in, my gaze has been altered (and continues to shift). My mind is doing all sorts of calculations in response to how I'm seeing things at the moment and I'm sure I'm acting a little funny.

What does it look like from here you may be asking yourselves? It looks an awful lot like my house and the insane cobwebs that are mapping the screens in most of the windows. It looks like my kids who are sprouting hairs and thoughts and motherfucking wings. It looks like my hot husband and his silver-back hair and his strong arms and patient mind. It looks like me.

Happy Mother's Day?

"Active Mothering" The phrase was announced like the NEW & IMPROVED INGREDIENT FOR FLAWLESS PARENTING!

And hearing it this morning on Mother's Day made me feeeeel sooooo gooooood. Made me want to jump into my minivan and blow the speed limit all the way to WalMart and buy up every damn bottle, box and bag of that shit.

Not been a fabulous 6 months in the heart and mind of yours truly. Been a trip down paths of self destruction, self loathing, desperation and depression with no return tickets and a truly pissed off travel agent.

I stopped working in October with the intention to write, take care of my babies 24/7 and put our household in the tight grips of a mama with the know-how and determination to rule the world.

I stopped working in October and I wandered to the edge and fell off.

I stopped working in October and I cinched a double thick, dark green, garbage bag around the top of my head and let the breeze blow me in an inconsistent and bumpy and haphazard way to the curb.

I stopped working in October and I wanted to die.

So much time to see myself. So much time to look in all the mirrors. So much time to be and be miserable and alone and so, so alone.

Our household hung by threads, the only thing I typed were Reddit searches. My kids did alright, though.

They held me. They kept me glued and kept my insides in.

What is a life? What is MY life?  I don't know, I don't know.

If my life were a pie chart (my favorite chart), the only wedge with anything filled in with permanent ink would be the "mother" piece. It's the only piece I know, that I fucking know I am good at. The only piece I can confidently cop to on the regular.

And my god is everything thing else up for review.

My god is everything else terrifying.

The lead up to today, Mother's Day, has been terrifying. I adore this holiday! It makes sense to me, I feel right about it and the thought of it being sad and confusing had me twisted up like sunken, ancient ropes at the bottom of the sea.

You know the relationship with my own mother isn't pulled from any story book. You know I fight tooth and nail for what I have with my children. You don't know (well, now you do) that I decided several months ago to not have any contact whatsoever with my mother.

While I have no idea of her intentions, I can surmise that she just didn't know better. I can figure out that her will to assimilate and survive surpassed her drive (if there even was one) to be a good mother. Is she guilty? Is she a victim? I'm 45 years old. These can't be my questions any more.

All of that goes into making today that much more of an almost impossible to get to destination despite all the best efforts: Passport? Check. Connecting flights? Check. Local transfers? Uhm.... nah. We don't offer that service. Sorry. Sucker.

At 5ish my eyes opened to the sound of Lincoln's rousing. I was determined NOT to get out of bed at that time on this day. At 6, I woke up again and went into Link's room. He had made himself a bowl of pasta and meatballs out of last night's dinner. I deemed this a victory. I changed his soggy diaper and went back to bed.

By 7:30 all was lost. Too much volume on the iPhone, too much fear of a self-cleaning-poo-boy scenario. Hot husband heeded the call and I pulled the blankets over my head.

I cried till I asked for my coffee at 9 or so. Ruby came in around then and PJ was floating around. It was time. IT WAS MOTHER'S DAY.

One kid gave me delicate and scrumptious French cookies and delicious toiletries. One kid gave me a Fit bit. One kid gave me a calendar illustrated with every possible interpretation of a handprint a teacher can devise. I'll let you figure out which is which.  Hot husband gave me the promise of 2 brand new, hand forged kitchen knives. I guess he's not afraid of me after all.

Today is the best I've felt in a million, billion, gazillion years.

Halfway into my first mimosa (yup, the count has been lost) the hot husband uttered the opening line to this post in response to PJ asking me if I was going to call my mom today.  I get that a whole lot of you want and need to connect with your moms today and more power to you! (send that energy to MY kids when it's time for them to pay homage to my eternal greatness) But I don't have that. I have me. I am the mom in my life that needs me. I AM THE MOM IN MY LIFE THAT NEEDS ME.

I AM THE MOM IN MY LIFE THAT NEEDS ME.

Eyes on the Prize

Something happened and I felt Penelope slipping away from me. The littlest Elf was a stranger to me. For the first time, I was worried I might be losing her, that I didn't no where she was going and I wouldn't connect with her any more. At all. Ever. Again.

I didn't go after her either. Her stick legs dangling off the edge attached to too big feet inside even bigger sneakers, she stared off into the distance. A distance that I saw as beautiful, but not mine. Panoramic views of shifting blue and grey and white clouds coursing around a setting sun, a slight, hot breeze and she wasn't looking back at me. And I should be cursed for saying so, but I was going to let her go. I didn't move. The airlocks were giving me a smaller and smaller perspective and my own too big feet were in deep, soggy tar and all I did was pour more of the goo into the puddle.

I'll show you what fucking stubborn means. I INVENTED stubborn. I will lose you to prove a point and don't you dare fucking tempt me. Yes. YES. I was that person and it hurt so bad but, but, but...

Fragile X  can still be a nightmare. A nightmare for Penelope and for us. Reading her is an impossibility (most of the time). Anticipating her is as futile as me sticking to a diet. She will not be owned because (I think) she has no idea where she belongs.

This lasted for days. And I don't care, days matter, seconds matter! Whatever passage of time when hell is staring you in the face matters.

And then? Love.

She came at me s   l   o   w   l   y.  She tucked her head in my direction when she got off the bus Friday. This morning she snuggled close and grabbed the hand that Lincoln wasn't holding. SHE. She is the glory (after she flings her guts at you).

This baby girl has so far to go and she is so strange and as she gets older in her mind and her body she will be even stranger; a stranger sometimes.

She is my test. She's the one who makes me work.

Love Letter

According to legend, I was born during a snow storm. But since I wasn't always in the company of the most accurate of historians, I looked it up and it's true that on January 27th, 1970 it was indeed snowing.

I was also always told I was almost born in a taxi? That my mother's labor was so short she didn't even know it *was* labor?

I do enjoy taxis but my own labors were seismic, interminable things.

Anyway, it snowed back then and it's snowing today and that symmetry is helping me keep things tied together, tied up. Safe.

45 years old today. I'm alive.  And I do feel like I need to mention that bit because today I am not feeling much of anything. My emotions are (for the most part) without ripples. I could float away. Not laughing or crying. Just here.

Milestones like this tend to be inspiring for me but not this one and there are no energy reserves to try and figure out why this day is even less a day than any other day.

The children (well, Ruby) have been lovely. PJ can't cope when someone else in our house is supposed to get more attention than her and Lincoln is just the same old ball of wonder and joy and unrelenting excitement that he always is-- Getting trussed up to play in the snow his body was all jerky-jerky with anticipation and he slammed his shoulder into my eye-socket. I yelled at him. As soon as i did I didn't feel anything different, though. Just the same. Dull. He was ok. Seconds later in the snow and howling with joy.

What am I saying? What am I trying to say? It's forced and obligatory today. I'm not enjoying this and I'm not doing a very good job.


So, I wrote all of that yesterday and as you can see, it isn't very good. It was a struggle. While I was falling asleep last night I realized what my birthday post should be. What it needs to be: It's a love letter to Ruby. 

Dear Primo*,

How, at age 14 are you so prescient? So intuitive and deeply loving? So unconditional?

Your face in the doorway yesterday morning shined like radiant coals, you smiled and smirked a little when you half whispered "happy birthday, mama!" You weren't deterred when I pulled the covers up over my head and mumbled that your slimy-jerk-face little brother had me up at 3AM and I needed some more sleep. Nope. You simply closed the door (gently) and let me snooze.

All day you served and smiled. I'd suggest you go somewhere, do something and you'd tilt your head, look right into my mind and shake your head ever so slightly to say "no way lady".

You hugged me and kissed me. You cleaned your brothers ass more times than I can count. You kept your little sister's emotional outbursts far away from me. You did the dishes and swept the floor.  All things you anticipated would cause me stress, anxiety, you took care of with ease and perfection. Your love for me shot out of you like bands of gold.

I can't breathe without you, Ruby. Whatever I did to deserve you I hope I keep doing so you stick around and continue to honor me with your glorious self. Your behavior yesterday didn't surprise me. It solidified and cemented (and all the other words in the whole world that mean "hold this shit tight") the fact that you are special. A privilege to know and be around... to mother.

There is a lot on your shoulders, beautiful girl, and you carry it all with grace and nearly imperceptible shifts. I'm hard on you because of what you mean to me, to this family. I've put incredible expectations all over and in and around you. But my appreciation of you (oh! I hope!) sinks in past it all and gets to your guts.

You are a dream within a dream (I wanted a daughter first, you know). Is thank you enough to say? It doesn't feel like it... it doesn't seem nearly enough.

Love, 
Mom.

*Primo is what The Hot Husband has always called her. I love hearing him say it so I had to use it here.

I will drive great distances to have a margarita with my friends. It's my favorite cocktail (closely followed by a gin & tonic). Both are good with almost any food and are fantastic all by themselves.  I don't drink milk unless it's in a bowl of cereal or with a very chocolatey-cakey-brownie thing and then it has to be skim and it has to be ice cold.

Water is my favorite. It goes with everything. Coke over Pepsi for sure but only with savory things (or on its own). I drink coffee every day but I don't drink it with food unless it's a dessert or some kind of breakfast pastry. Never coffee with eggs. Never. Orange juice with eggs.

Wine (red or white) is right up there with water. Seltzer (flavored or unflavored) is nuzzled up in second place.

Anyway. Thought I'd put all that in your head, too.

Ever push out a fart whilst you were trying to push in a tampon? Yeah. Me neither.