Sunday, August 26, 2012

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

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

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

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

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

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

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

MY life. Their MOMENT

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

Wednesday, August 22, 2012

Don't Tell Anyone I Told You

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

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

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

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

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

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

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

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

Monday, August 20, 2012

The Aftermath

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

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

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

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

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

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

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

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

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

We all left content and calm and exhausted.

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

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

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

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

Saturday, August 18, 2012

Yes, I usually keep this to myself

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

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

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

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

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

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

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

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

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

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

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

Wednesday, August 15, 2012


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

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

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

Tuesday, August 14, 2012

J. A. Strikes Again

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

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

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

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

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

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

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

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

Great! Right?

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


Wednesday, August 1, 2012

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

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

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

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

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

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

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