Breathe In, Breathe Out. Repeat.

I'm not alone. I'm not the only mother in the world with multiple children. I'm not the only mother in the world with the majority of those children having a disability.

I am the only mother in my house who does, though.

Today is a day that I am under the weight of my children. And trust me, that feels as awful to me as it is for you to read.

There are moments as a mother in my house where I am sure that I am experiencing on a visceral level what it's like to be my son and my daughter. Moments where there is nothing but sound and movement and input and pressure and it's loud and unrelenting and pushy and pully and I'm whirling through the waves kicking and paddling in a futile attempt to keep my head above water.

The difference is that I have speech and cognition and the ability to reason. But that difference can make the scene all that more maddening and uncontrollable because my talking and thinking and rationalizing doesn't work all the time. Sometimes it just doesn't work.

I haven't yelled at my kids in so long...  I can't remember the season I last yelled. I don't know if I was barefoot or boot-clad, sweating or chilled to the bone.

An unconsolable Lincoln clutching and yelling and whining and pulling demands all of my attention.

A desperate and wronged Penelope cuts a nasty gash that needs me more.

A defiant and belligerent Ruby staring me down.

Direct requests shit on.

Disregard and mayhem in the form of glitter flung far and wide and all over the dinner I was about to serve. Empty plates of mochi shoved in the face of me asking no one to eat before I could serve that now bedazzled dinner.

I fucking lost it.

I HAD TO WALK OUTSIDE AND TAKE CARE OF LINCOLN FOR FUCKSSAKE.

He only wanted me. He needed me. It had to be me.

Here's the kicker: I'm here, ripped apart and licking my wounds and I hear Penelope and Lincoln in the other room playing and talking as if nothing happened.

And I can feel the weight of Ruby's anger seeping up through the floor, because she, like me, takes much longer to go from boil to simmer to cool.

This is hard.

Need to Know Basis

"Where are we going?"
"Where are we?"
"What's he doing?"
"Where is he?"
"Where is she going?"
"What are we doing?"

With a tiny hand, palm side up, fingers slightly spread and bent so sweetly at the wrist. Hair making tender, vanilla iced slashes in the air as his head flits from side to side looking for more things, people, stuff to ask questions about. Incessant goddamned questions! His questions are Indy cars flying though his mind and out of his mouth.

"What is that?"
"Who is coming?"
"How are you?"

He is EXHAUSTING with his questions. Even once he knows the answer, he ASKS ON! It starts from the moment his downy head appears at my bedside each morning and goes till that same fluff-ball of a noggin is down for the night.

"Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy? Mommy!"

"Yes, baby?"

"Love you, too!"

That last bit right there is why I keep entertaining my newly minted linguist/inquisitor/sergeant-of-all that-must-be-known.

To those of you who told me this day would come, I thank you and I love you and we're here, with lots of wine and snacks if you'd like to stop by and acknowledge some of these questions for a few hours? Please? Pleeeeeaaaaasssse!

A Day in the Life

Started crying in the car the other day when I was driving home from Trader Joes with the Great One and her friend, Kat and we  put on the Idina Menzel version of "Let it Go".  Kat had only heard the Demi Lovato version and it was vitally important to readjust her worldview.

I cry every time I hear that woman sing that song.  PJ, my sweet and precious elf is playing it on her iPad next to me right now and I get so overwhelmed, so taken…

Show tunes? Me?!? For the love of all that is good and holy, what in the world has happened here?!?

It's change. Pully, stretchy, achy, thickly sweet and stingingly sour change. While this nasty beast of a Winter is dragging her brutal ass off the stage, pulling mild, shy and unctuous Spring behind her I am swaying from side to side; caught in their fickle fucking dance. And when I make a big enough move from one side to the other, a new tiny shred of new and knowing forces itself to the surface. I'm collecting the pieces and building them up in a way that will eventually fit me (maybe when Spring finally takes over and resets the scene once and for all?).

I feel stronger, more capable, more in love. I also feel vulnerable and unsure and aware of how fragile my whole life is. Appreciation? I think I've always had that. But it's different, tougher.

Like the other day in Sephora with Ruby and Kat… We were there (as promised) to fulfill one of Ruby's magical birthday wish list  items and because of a lack of childcare and an overabundance of attachment, we took Link with us to NYC for the day. Sephora was the final stop.

He was WILD. He was crawling around my body without touching the ground. He was yelling and would sometimes shriek. He was rubbing his open mouth all over my arms and face and pulling my hair over my head to cover his head. I held tight. We were next in line, backing out now wasn't an option. The young woman checking us out never skipped a beat, never a sidewise glance or exasperated breath (she even gave us an EXTRA birthday gift). All the while I'm thinking to myself: How lucky am I! I get the trust and the love of this boy! This, the most fascinating and confounding boy within miles of where we were standing LOVES ME! He loves me. And I also brought the feeling into my veins that shopping isn't always like this. Shopping is usually NOT like this and those flutters of calm and reason flowed in and out of my heart muscle with every breath I took. I swear my pulse was never above 70 the whole time we were in the store.

As we were leaving, I looked at our salesperson and I thanked her for being so patient and gentle faced and when I said those words, the whole line of women at the registers turned their heads to the left and smiled at me and Lincoln in unison and I wanted to go all Oprah on them! You get a car! You get a car! You get a car!

I wanted to scream with glee: See! is that so hard?? Is a little understanding of something so obviously different from yourself so hard?

Walking along Houston St. back to the parking garage with my beautiful daughter and her pastry shop pretty friend sashaying along in front of us, Link's saliva was drying on my arms and face and it left behind a scent that was so comforting and delicious. My arms were getting sore, my back hurt (even today, days later, I have an ache in my forearms that P90X would have a hard time inflicting) and I was getting a blister between my big toe and my flip-flop thingy and I couldn't think of a time that I had felt happier, more at ease.

That's the change I'm talking about. The giving in to the magnetic pull, the not resisting, the staying strong.

What does this have to do with that song? Listen to it. Listen to it and tell me it doesn't make you feel something. And it you don't, if it doesn't' dig in (even just a bit), think about that and try this change shit. it's pretty damn transcendental.

If you look, you'll see.

Baby. Boy. Bam.

I think about him all the time. I say his name in my head just like that, like a mantra. When I get out of my car in the morning to go into work I think about him and I say his name. When a mother is pushing and pushing and pushing, I say his name.

When a mother is rushed to the OR I say his name. When a mother is a scheduled c-section and things are calm, I say his name.

Baby boy Bam. He lives with me and I love him.

I fell in love with him first when his mother actually took a nap during one of her night shifts and I started to wonder if it was because a wee babe was growing in her belly and the tired during those first few months was just too much. I didn't say anything because she didn't say anything but, still...

When it was obvious and we could see it was indeed a small, vivacious human being taking up residence in its mom's belly, all bets were off and I was head over heels for whoever was in there.

That baby scared me too many times with the worry that it would come too soon. That my love would have to turn into something else for a long time and, well, that was just terrifying.

Turns out that, Bam, the sweet angel boy did come too soon. Too soon to cry and nurse and laugh and wet his diapers and keep his parents up at all hours. Too soon to grow hair & teeth. Too soon to look at his mama and his dad every minute with wide & loving eyes. Too soon to use those eyes to take in the rest of us and see how much we loved him.

Baby Boy Bam came too soon for so much. But he came right on time for so much more.

I was able to handle the grief of my own son's diagnosis with more courage and love because of him.  I don't get as upset with my daughters for their minor transgressions because of him.

And I don't want to speak for his mom, his exceptionally wonderful mom, but I'm pretty sure he made her a better person. Better mother, friend, wife, nurse (if it were even possible for her to be better at those things).

Thank you, baby. Small, precious, perfect baby. Baby who never had to feel pain or grief or loss. Baby who was simply and will always be just love.

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.