Friday, December 27, 2013

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

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

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

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

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

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

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

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

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

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

Nope. Wrong. Dead wrong.

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

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

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

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

Friday, December 6, 2013

Teen Beat

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

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

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

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

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

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

Thursday, December 5, 2013

Words, words, words

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

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

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

Today I got the report.

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

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

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

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