Thursday, December 24, 2015

Fair is Foul & Foul is Fair

When Lincoln got diagnosed just about 6 years ago now, the husband and I weren't connecting all that much. We were in a phase: We were both working nights, we were both resentful of our predicaments, I wanted to rest, take care of my 16 month old better. He wanted a gig that gave him more time, money... We both wanted to be in better shape. We had too much to do separately (or so we thought) for us to be grooving on the same page, riding the same wave, licking the same ice cream cone.

We knew something was different with Lincoln, but we didn't know what. Stress. Ruby was struggling with bullies and bullshit. Stress. Penelope must have been a struggle too, she was so often a struggle back then. Stress.

Wash, rinse, dry, repeat. Try not to fuck it up. Get through it. I remember feeling that way. I remember not having a lot of sex, or nights out, or inside jokes. It wasn't awesome.

Then, we got the call: Please come to the office so the Dr. can go over your results. It wasn't going to be good.

And from there, from that moment, my marriage tilted like a curious puppy's head, just so.

We instinctively gave each other mansions to grieve in. We allowed each other to say crazy, wild, strange, self-deprecating, awful, awful things.

My husband is not a tender, gentle person as a rule. But he was gentle with me as I cried and moaned and blamed myself for not knowing I carried this horrible thing and I had given it to our perfect boy! Our one and only son!

I recoil in the presence of selfish people, but I opened my ears and eyes and heart to the selfish and deep and horrible thoughts my husband had.

We cried for a thousand years.

We grieved a million lost lives.

We crept like elderly sea turtles back into each other's hearts.  Have you looked at someone's face so much you could read their mind? That happened. Have you given into a safe sexual moment that you emerged from stronger and lighter? That happened, too. Have you listened to the love of your fucking life tell their best friend about your son's present and future and want to swallow them whole like a basking shark of love? Yes, that happened.

I will defend all of him and all of us because of how we forced our way through to the other side of our son.

Now, it's Christmas Eve.  The boy we finally and with the joy of a million, trillion rising suns, we welcomed into our minds and hearts and lives has been DEMANDING the cookies for Santa be put out RIGHT NOW. Is insisting that IT'S DARK, IT IS TIME FOR SANTA.

He informs our existence. I kiss my husband with joy and breathlessness because my family includes him. We move from dawn till dusk, completing task after task like some hyper vigilant War Boys on steroids because HE IS HERE AND HE WILL BE OK.

Do you understand that? Our boy will not die because he isn't who we thought he was 7 years ago when he slithered out all blue and slimy and GIGANTIC. He is here and he is OK.

And because he is OK, and because my husband is who he is (incapable of quitting), we have not only made our way thorough the wasteland of diagnosis, we are thriving in an oasis.

We are not like other coupled people. We are the 1,000,000:1 jerks you read about. We fucking like each other and didn't shrivel up like salted snails when our whole fucking world fell apart.

It's Christmas Eve and he is yelling at his oldest sister to STAY IN MY ROOM RIGHT NOW ALL NIGHT while I type and his father naps. It's Christmas Eve and he is why we all give a damn about anything, especially each other.

Monday, November 16, 2015

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.

Saturday, November 7, 2015

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?

Tuesday, September 15, 2015

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.

Sunday, May 10, 2015

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.


Saturday, February 7, 2015

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.

Wednesday, January 28, 2015

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.


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

Thursday, January 22, 2015

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.

Wednesday, January 7, 2015

Prophets Are All Around Us

I have been making meatloaf confidently (and deliciously) for 20 years now. I've always used my Nana O'Brien's basic recipe proportions but over the years I've tweaked it a bit: ground turkey instead of all beef, panko for regular bread crumbs, fresh rosemary in place of all purpose seasoning. But one thing I've kept exactly, precisely the same: The Glaze. It's a mixture of ketchup, yellow mustard & brown sugar. You mix all those things up and pour it on the meat before it goes in the oven and it is magic. 

I'm convinced that glaze sealed the deal for me and the hot husband. It's that good.

For years, I have made this dish for friends and family. Dinner parties and Wednesday nights. I love it so much that I often wish that it wasn't called "meatloaf", something this delicious needs- nay, DESERVES a far more sophisticated and culinarily appropriate title! "Chopped Meat Divine" would be so much better! Don't you think?

So anyway, as I was making yet another masterpiece tonight I did something I've never done before! And I have no idea what prompted me to do so: I plopped the meat in the baking dish (as usual) and shaped the loaf (like always), but this time instead of gauging the shape of the meat from looking down at the pan, I also got down low and looked at across the top; I spanned the Meatloaf Horizon and I saw that it was dramatically misshapen! It's lack of symmetry was shocking and I instantly felt motivated to adjust and correct and make it as pleasing in the baking dish as it was in my heart and mind. A few hugs and pushes and presses and soon enough if was more uniform and equal.

It was a revelation! And a reminder. You can look at something for 20 years and always see that thing the same way, OR, you can tilt your perspective and see it for how it could be. Don't you already feel smarter?

Dinner is at 7.