Don't Call me Daughter

So this one is a little bit harder to distill, to put into a digestible form.

Another one of my dad's died a few weeks ago. That makes 2 in the last few months for those of you who are keeping score.

Ray. Lauren Raymond Pike. Sonofabitch Supreme. Major Dick. Captain Asshole. I wasn't angry when I started writing this, but typing those last three phrases literally raised my pulse. Makes me believe that I do this to myself…

He died of a massive stroke. There was no chance. One of his carotid arteries had been %100 blocked for years and the other had been scraped to %75 efficacy. He was a violently uncontrolled diabetic with an ego problem.

He was a know-it-all and a loud mouth and a bigot and a misogynist and a pervert.

He was not OK to me. But as an effect of his terrible (step) parenting of me, I got tough. I rose up and did good and distanced myself in body and mind and spirit as far as I could from him as soon as I could. His presence in my life was the single biggest motivator for me to succeed and get the hell out of Dodge. And as I grew up a little and moved further and further away as a person from him, I would cringe whenever he'd compliment me or take credit for my accomplishments. Ironic.

Here's where it's tricky: People loved him. He made some people happy during his time on planet earth. His mother adored him. And she was one hell of a lady! A gorgeous, vivacious woman who lived out her days in a fab apartment on Michigan Ave. in Chicago. His two children (at least at the end of his life. I didn't pay attention to their relationships when I was a kid getting terrorized by him or when I became an adult and didn't have to worry any more) cared for him very much so he must have done some good for them and their children…  And he was married a bunch of times. I guess those wives loved him for a while, I'm pretty sure my mother did. Although their fights and general shitty attitude towards each other is what stays with me most.

When I was 19 or so I started having pretty elaborate fantasies about what I'd do if I was ever faced with him, a ventilator and the ability to pull the plug. In my early thirties I was called to help by my mother because he was in a diabetic rage and I had an insulin syringe in my hand filled and ready to get his +600 blood sugar under control. I gave him the medicine, but I had to think about it first. Really think about it.

Anyone who really knows me know what a pacifist I am. Violence is not in my nature but I was willing (at least in my mind) to hurt him. What does that mean?

As an Atheist, I don't have a lot of places to seek shelter when I don't understand something about myself or other people or the world. There is no "let go, let God" for me. And I'm not saying that believers have an excuse, that it's definitely easier (is it, though? in a way?). I'm saying that my belief system, that is my belief in humanity, my belief in the things that I can see and feel and touch all around me, forces me to keep looking.

I thought for such a long time that when he finally died, I'd have an answer, something final. Not true. Not true at all.

Nurses: A Cautionary Tale

 I am a nurse.

So what does that mean, exactly? It means I go to work every single shift with the sole intent of helping. It means that when I walk through the doors of my facility I am taking on the responsibility to care for other human beings regardless of my personal feelings, biases, emotional state, political leanings or religious beliefs. It means that when I step onto my unit in uniform I take my assignment with pride, with a positive attitude and grace.

I am a nurse. I am technical, I use computers to care for my patients, to keep them safe from medication errors and to comply with federal regulations. I am clinical, I start IV's, perform procedures, dispense medications orally, intravenously and by injection to ensure your pain and disease processes stay within normal limits or improve. I am nurturing, I hold your hand, your family's hand. I cry with you and for you. I call case management if your physical or emotional state is threatened and sometimes I call security for those same reasons.

When things are perfect, ideal. When the census and acuity are low and the nurse to patient ratio is safe, my job is difficult. When management is involved and aware and attentive to the needs of the staff, my job is difficult.

And I'm going to be egotistical here: Like most jobs it provides my family with income to buy food, pay our mortgage, give us health insurance It gives me a sense of self-worth and my kids a positive role model But it is unlike most jobs in that it has more intrinsic value. It is more important and life affecting. There is more risk, more opportunity for catastrophe and exultation. My job is more important than other jobs. Period.

The support staff we need, that we rely on is crucial to our survival and our ability, as nurses to perform at peak levels. Our housekeepers, surgical techs and nursing assistants are the safety net we couldn't fly without. Taking them for granted is a huge diss/piss/black mark on our karma and we know it.

Conversely, when management, leadership, administration takes us for granted, things fall apart.
Things rust. Things like morale. Things like the drive to do more, do better. These things rust and crack and stop working.

When nurses aren't supported by the people put in place to support them we have anxiety attacks in the parking garage. We don't sleep well at night. We are on edge. We don't eat well or take care of ourselves. When the structure loses its integrity, the human body that the nurse occupies breaks down and loses confidence.

We are the user interface that is backed up by the machine. If the machine fails, we fail. And if we fail, we fail our patients.

Very recently I resigned from a facility that is seemingly working very hard to be the defining example of what I've just described. I am lucky that I was able to find a new job at a facility that treats its nurses with respect and kindness; treats us like human beings.

This has to be the trend, this notion of giving to the nurse what the nurse is expected to give to their patients. Because if it isn't (and I'm afraid it isn't, I'm afraid I didn't get just a little lucky. I think I got a LOT lucky) the future is very bleak indeed.

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.

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.

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...

The Prince Had A Birthday

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

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

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

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

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

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

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

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

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

Watch This Space

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

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

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

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

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

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

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