July 23rd,2007

The death of a friend

How can this be?
It wasn't supposed to happen like this lady.
Not this young. Not now. Not ever but really not now.
She was my sister, my mother and my best friend, my partner in crime.
If you had told me when we were 12,13,14,15 that she was going to die before the age of 35 I would have called you a liar.
I just can't seem to wrap my head around the fact that she's not here anymore.
We used to joke with each passing birthday that we needed walkers with racing stripes and Geritol and now I'm really going to be the only one who will need them because she's not going to get any older.
I just...I'm sitting here sobbing remembering all the giddy stupid nights we spent at her dad's place getting ready to go to some show or some club.
Remembering how much she loved life and how everyone around here was affected by her. Not one person got away unscathed. EVERYONE knew she was a special lady and love her or hate her you were changed after having met her.
We haven't been close in recent years and I've missed her.
She never met Brian my youngest son and really only saw PJ when he was a small fry.
When I talk about her thought I still call her my best friend beacuse to me she is. There will never be another Chrissy. No one will ever take her spot as my best friend.
I have a vault of memories that were just she and I. No one else shared them and now I'm the only one.
If I mention Round up Ranch and the lost sweatshirt not one of you will get it but she would. If I yelled "Squidlinks" you wuold all look at me weird but she would crack up laughing.
If I said to you "Say it with flowers" you would think of FTD but she and I had a whole nother meaning for it.
The list goes on and on and on.
She and I knew each other for 30 years. Since 2nd grade. That's a hell of a long time and a hell of a lot of history.
I'm gonna miss you girl like nobodys business.
I'm not sure what I'm going to do in this world knowing you aren't in it anymor

July 26th, 2007

You

Your death has consumed me. It's overwhelmed me.

 It's like a blanket and I'm smothering.
The loss is too great. My heart is too heavy.
I cannot come to grips that you are gone.
I have no memory of a time without you. You were always in my life.
We were friends for 30 years. That's a hell of a long time. Everywhere I look I see you.

The love that is being shown for you is overwhelming.

The lives that you touched, the people you made better for just knowing them.

You would be pleased and embarrassed at all the fuss being made over you. I know you would.

Everytime I close my eyes I see you. You are so beautiful, so strong, so confident. You always were. From my first memory of you in school at age 3 or 4 I remember you as a presence. A force, a leader. A kind soul.
I almost feel like your life has been split in two parts. 

Those of us who knew you in the past and friendships faded and those who know you now. It's strange. I miss you for what you were, for the child, girl and woman I remember. The best friend. The girl who would sit in the back of my dad's car on the way to the club and be as giddy and giggly as a schoolgirl and when we got to the club we would do what my dad named the

 "fuck you strut". 

I can't do it anymore.  I've tried but I've lost my superpower. I guess it was your attitude and energy I was feeding off of.
I remember there was one random night in an unnamed club and I found a boy I thought was cute. We all went to a diner and all of a sudden he was sitting next to you. Since you and I were so very different in looks I asked him what was up. (It was a safe bet most nights that if a boy liked the tall leggy brunette he wasn't gonna want the short platinum blonde) I can hear his words as if he just spoke them he said "You're cute but she has a certain something. There's an energy about her. A presence"
He was right ya know. You do.  Everyone saw it and felt it.
I think the part of it all that bugs me the most is that we lost each other. We disconnected for a while but I never gave it too much thought because I knew no matter how far apart we were or how much time went by I could always call you and just say "Hey" and you would know who it was.
If I'd had a crystal ball I would have tried harder to be more of a part of your everyday life.
For that I don't think I will ever forgive myself.
I almost feel that because we weren't close in recent times I don't have the right to mourn you this intensely and with this heavy a heart. But I can't help it. You were my oldest and my closest friend. How many secrets do you take to the grave with you lady? How many late night therapy sessions?

Yesterday when I got the news it rained all day. It never once let up. Today I wanted to wake up feeling better, with a new perspective, a sence of  peace and solitude but I never slept last night so all the things I felt yesterday have carried over into today.

There is this huge hole in the world today and as I look out my window I see the world going on as normal around me but for me it's stopped.

I look at my kids as they are playing together (okay beating each other up) and I envy them that they don't know the feeling of their heartbreaking yet. They don't understand loss of this magnitude. They cry because the truck they want is just out of reach. I'm crying because I'm never gonna see you again.

I'm drowning...

I think I've got it now

A blog I'd written about Chrissy shortly after her death in 2007

 I think I know what it was about her. What made her special and stand out from the rest.

She was the epitome of cool. She could take anything and rock it. She was so amazingly versatile in her ways and was always reinventing herself.
When she was a glam kid, she took it and lived it 100%. From polka dots to pigtails, from lunchboxes to lollypops, it was all her.
She did Goth for a while and managed to make the most beautiful Goth Chick I think I'd ever seen. If you never got a chance to see her in black Vinyl then I'm sorry because you missed a heavenly vision.

When she went Rockabilly it was like she was born in the 1950's. She never went repro; it was true blue vintage for her all the way and nothing less.

When you were with her, she made you feel special and cool. Like there was always a velvet rope around you and you were a living breathing VIP room.

She was elegant and refined and classy and smart. Wise beyond her years and talented. She loved life. She never let anything stand in the way of what she wanted. She lived on her terms. If you were lucky to be there for the ride, you were family. If not, get out of her way because she would have run you over.

She was one of those few individuals who truly understood the saying "life every day as though it's your last" She always did.

I always felt a bit in awe of her. As a teenager, trying to figure out who I was and where I fit in she never did. She always knew exactly who she was and who she was going to be.

She was a leader, if she had wanted to start her own religion I believe getting a flock together wouldn't have been difficult for her. People wanted to be around her. They listened to what she had to say and emulated her in fashion and style.

Even now at the tender age of 34 I still find myself asking "Would Chrissy think this is cool?" and on nights out I've been known to email her photos of outfits for her thumbs up or down.

She could make anyone a friend. All she had to do was smile at you.

I always wondered if there was much she couldn't do? She was a published author, world traveler, talented horsewoman, she could draw, paint, sew, sing and tell me she wasn't truly gifted with a makeup brush.

She was always up for anything and loved to be spontaneous.

With her, you never quite knew what the day would bring.

I'm going to miss that.

New Camera

It happened again. Hubs leaves for Atlantic City & I get silly with the camera.
Actually, tonight there was a legit reason for the camera play. I got a brand new camera & wanted to see how it looks...You can see how my night progressed.

Who I am...

On Tuesday my father took the pups & I to the Paramus Park Mall here in NJ to do the once a month Lego Store free build.
We coordinated it with one of Pats classmates who is also a Lego freak. He met us there with his grandmother & aunt.
We all went out to dinner together after & had a great time.

Today at school, the boys mom told me that her son had a fantastic time and that her mother said
"Diana is so nice & so NORMAL"

This of course cracked me up as did the face the mother made when she relayed this to me.

I am no stranger to this reaction & truth be told, it never fails to delight me.

I LOVE decimating first impressions.

I look in the mirror & I see me. I see a woman who knows exactly who she is & is comfortable not being normal or mainstream. I also know that I'm a well educated, intelligent, kind, compassionate, trusting, open person who would be an asset to anyone who wanted to add me to their collection of friends or acquaintances.

I am however, quite aware that my appearance can be confusing & if you were to judge me based only on how I look, I suppose I might fit into a typical stereotype of being uneducated, uniformed, angry, unhappy, rebellious and anti establishment. I suppose you might think I do drugs or drink and spend time out partying away from my kids.

Would it surprise you to know that I've never ever done a drug in my life stronger than the Morphine they gave me at the hospital when I had the boys?
Would you be shocked if I told you I don't drink booze & I'm not a recovering alcoholic?
Would your head fall off if I told you my Friday & Saturday nights are spent cruising Pintrest?
How would you react if I told you we are Disney Vacation Club members with Season Passes & we go to Disney World two or three times a year?

I'm not actually sure WHAT people think when they see me. I do know my appearance (while to me is really REALLY toned down and dialed back) is confusing to some & it causes snap judgements that are almost always wrong.

Yes, I'm a 39 year old mother who carries a Hello Kitty purse. Yes, those are pink extensions in my hair. Yup. My converse have glitter on them. Yes, my nails are bright green. Why yes! That IS a skull on my shirt. Absolutely. That is a real tattoo.

Stop. Take a deep breath. This is my shell. This is my outside & not what counts. I look the way I look because it is how I am comfortable. Because I am  comfortable with me, I am happy. Because I am happy, I am able to be a well adjusted, "normal" adult.

There is a fantastic line from a song that I've carried with me since I first heard it"Who I am and what you think of me just might not be the same"

 Come have a conversation with me. Get to know me. I'm rather certain you will find I am none of the things you think that I am.

I spent so much time as a kid trying to be like everyone else. Trying to fit in & be something I wasn't. The harder I tried, the more rejection I came up against.

By age 13 who I was was firmly in place & established. I have never spent another day uncomfortable with who I am.

I know lots of you think "You are 39, it's time to grow up".
My own husband tells me that every single time I threaten to dye my whole head pink again. 

But I AM grown up. I'm a kick ass mommy, raising two awesome boys.  WHY can't I be a good mom AND have fun colored hair? Because YOU think there is a cut off age for the things I love?

 My own mother was outraged when my hair was hot pink.
I was the mother of two little boys. Having pink hair was IRRESPONSIBLE.

Really mom? Funny, I thought teaching my kids that they should be who they are and rock it (whatever it turns out to be) loud and proud actually makes me a very responsible parent. If you can't love who you are, you won't ever be able to love anyone else.
Would having a full tattoo sleeve make me any less of a grownup? Would a lunchbox for a purse suddenly cause me to be unable to carry on an adult conversation?

Of COURSE not. It all goes back to that whole compartmentalizing thing we humans like to do. You go here, this behavior ends on this birthday, you can't wear this past this age.

Any of you know how old the AMAZING Patricia Field is?  She is 71 years old.
The amazing Vivenne Westwood is the same age. Betsy Johnson is 70.

There is NO cut off age on being true to who you are.

I'm teaching my kids to be kind to all & reserve their judgements on most. To see people for what's on the inside & not the outside.

The point here? Don't go by first impressions. They are so often wrong.

Summertime & the livin is easy...

Clearly Lady Holiday didn't have kids. (though the part about Ma being good looking is dead on)
I had enrolled both kids in the summer program being offered by the schools.
Pats was in from 8:30 to 2:30 & Lion was in from 8:30 to 12:30.

Today was day 2 of the program & Lion decided he was done, done, done.

We did the same thing last year but I forced him to stay in & the whole month was crap. I'm not doing it again this year. He told me in no uncertain terms he did not want to be there, and so I've pulled him out.

Okay, at least I still have one kid in for the summer. I can handle one at home.

We go to pick up the big son & HE tells me he's done, done, done. The only reason he wanted to be in the program was because they offered a Lego building course. It's not on his schedule & it's not being offered.

He was actually crying on the walk home because he doesn't want to go back.

I'm not going to force my kids to go to a summer program. That seems cruel. Summers are supposed to be fun!

So, I went from having 4 free hours each day to get errands & things done, to having the next 71 days straight with the kids.

 I will survive this. We will have a good time together. We will go to the park & we have an annual pass to the NY Zoological Parks so we can hit up zoos & museums.  

Somehow I feel I will turn out to be excellent blog fodder.

Living with Autism

(rough draft blog - will be going back & editing this)

 Our society loves labels, and compartmentalizing. It makes us feel safe and comfortable to have someone explained to us in 5 words or less.

If I had to label my kids I'd tell you that my older son Patrick (Pats) is funny, kind, smart, curious & wise beyond his 8 1/2 years.

My younger guy Brian is 7 & a bit harder to describe than his brother. Certainly he's got lots of his brothers traits, he too is funny, smart, curious & more often than not kind but he's way more complex than his brother.

When Bri was 2 1/2 he was diagnosed as being a distinguished member of the club known as

"Kids on the Autism Spectrum."

Since that's a mouthful we've shortened it & just call them

"Special Needs Kids"

When he was first diagnosed I never felt sorrow or anger. I felt relief. I KNEW there was something going on with my little guy & it finally had a name.

I didn't tell people at first. Of course I told my family but when we met people in the park, or folks we hadn't seen in a while, I kept his diagnosis to myself.

I didn't want him to be labeled or compartmentalized. I didn't want him to be put in that box & have people see him nothing more than a Special Needs Kid.

I didn't want people to pity either he or I. I wanted them to see him for all the amazing super cool qualities he had, not only what he was lacking.

Then we planned our first Disney trip where he had to sit in his own seat & not on my lap & the second I tried to strap him in his seat he exploded.

I cannot even describe the tantrum to you. It was like...what? A grenade going off? A bag of super pissed off hornets? A "Housewives of New Jersey" reunion?

He thrashed & howled and railed against that seat belt as though it was on fire. We actually delayed the plane being pushed from the gate because I couldn't get him to stay in his seat.

I truly thought we were going to get kicked off the plane. When we landed I made a beeline to the  bathroom in the airport & cried.

I cried because I knew people didn't get what they were seeing. I cried not because they were judging me, but because they all had the wrong label on my kid. Their label said "spoiled little brat" when that wasn't at all what he was. He was a little guy who was still struggling with speech, had sensory issues & the only way he knew to get his point across, to let me know how he was feeling was to tantrum.

I realized that I needed to take a deep breath, put on my big girl panties & start sharing his diagnosis with people so they could better understand what they were seeing & hopefully with that understanding, they would be kind & patient with us.

I hopped on the internet to see what other spectrum parents did in situations where the potential for big melt downs or inappropriate behavior loomed large.

Not much out there. Lots of parents lending sympathetic ears but not much in the way of advice & in fact, more often than not what I saw was parents discussing the confrontations & fights they would get into with other parents or the general public who made snide, unwanted remarks or unfairly judged the situation without all the facts.

I decided I was not going to go that route. By nature I have a huge mouth, sarcastic wit & I'm quick to defend but I'm never one to look for confrontation. I will always do what I can to diffuse a situation before I go to battle. (of course, if you bring a war to me, you need to fear the consequences because I have a very very vicious streak in me and will show no mercy to those that mess with my offspring)

I looked to  a favorite Lyndon Johnson quote & made it the backbone for how we dealt with ignorance.

"If we are to live together in peace, we must come to know each other better."

Lion & I were going to be Autism Ambassadors & we were going to be as loud & proud about it as we could.

The trouble with Autism & the Spectrum Disorders is that it very often does mimic the behavior of a spoiled brat.  So often Brian's tantrums look like nothing more than a child having a really really intense temper tantrum. ( Other Spectrum parents can tell the difference at 50 paces because once you know what one looks like, you know how different it is than other tantrums)

We were on a Disney trip, & Pats & my husband wanted to go on Splash Mountain. Brian was too little to go & so we sat on a bench to wait. As we wanted Brian got more and more agitated till we were in a full blown no holds barred melt down. Hitting, kicking, scratching, biting, trying to run away, screaming, crying. 

I have always taken a zen approach to his tantrums, realizing that my only role is to keep him safe from himself & from others (and these days keep others safe from him!) but that I cannot not reason with him, cannot not bribe him, cannot not soothe him, & cannot redirect him. I must wait the storm out.

I also tend to zone other people out during these tantrums. My focus is only on him & blocking punches, deflecting kicks, keeping chairs & other objects out of his reach & I don't care how it looks to you or your grandmother that I have my kid in an arm lock or that I'm physically restraining him. Trust me, you do NOT want me to let him go.

So I'm sitting on a bench, at the happiest place on earth, attempting to contain a hurricane & I glance up to see we've gathered a crowd. People staring plus undercover Disney Security.

I managed a weary smile and said in a loud voice

"This is Autism folks"

First time I ever told a stranger what they were seeing, and I remember feeling really proud of myself.

I quickly realized that I couldn't chase after him like a crazy mom

"Hi, sorry, did he bite your son? He's on the Autism Spectrum"

"Hey, how you doin? He hit your daughter with a toy truck? Sorry, he's on the Autism Spectrum"

"Did he throw sand at your child? A million apologies, he's on the Autism Spectrum"

EXHAUSTING.

I decided that not every single infraction needed to be explained away. I would assess the situation & if it was less than dramatic, an apology alone would do.

After all there was still the part of me that wanted folks to see Bri for the amazing kid he was & not just "that special needs kid"

Bri does not have "classic Autism" he's been diagnosed as PDD-NOS.

 PDD-NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified. Psychologists and psychiatrists sometimes use the term “pervasive developmental disorders” and “autism spectrum disorders” (ASD) interchangeably. As such, PDD-NOS became the diagnosis applied to children or adults who are on the autism spectrum but do not fully meet the criteria for another ASD such as autistic disorder (sometimes called “classic” autism) or Asperger Syndrome.

The two main characteristics of the disorder are difficulties with social interaction skills and communication.

Brian struggles with both on a grand scale.

My friend Sarah gave him the nickname "The Raptor" because he appears cute & harmless but attacks with startling viciousness & no remorse.

I have always refused to put my kids in a bubble & put Brian in as many "typical" social situations as I can.

The world is going to have to learn to get along with him, & he's going to have to learn to get along with the world.

After school each day weather permitting, we hit the playground.

Every day at least one, but usually more than one child comes to me to tell me Brian has hit, spit at, kicked, slapped, smacked or otherwise insulted a fellow playground goer & he has broken the unwritten playground code of conduct.

I always make Bri apoligize & I apologize. At this point, most parents know Bri is special needs so no explanation is necessary.

Once in a while however, we venture to a playground that is not at school, a general park playground & true to form, Bri will at some point insult or hurt some fellow kid.

As I mentioned before, the infraction will determine how I handle the situation.

My boys are really protective of each other but the difference between them is that my older guy is not a scrapper. He would rather get in your grill & tell you to back up & make a few mock charges before he throws down. He won't let you mess with his little brother but he's going to warn you & come to me to tell me what's going on before he gets violent.

If Brian feels that anyone has disrespected or insulted his big brother in any way at all, he's going to kick some ass. He's strong, fast & fearless. If you piss him off, you are going to leave that battle bruised & worse for wear.

True to his nickname "The Raptor" you won't see it coming & if you don't know him, you don't know that side of him.

I however, know him, & his triggers & feel it's my job to try to stay one step ahead of him to attempt to keep the playground from turning into a "Sharks" vs "Jets" kind of an atmosphere. I try to keep the street rumbles to a minimum.

I refuse to helicopter parent. I will not follow him around but always have an eye on him & I'm very tuned into the kids he's playing with & how Bri will react to the type of play they are engaged in.

I'm always on the edge of the bench ready to spring into action.

Much of the time I can anticipate how he will react & can redirect or diffuse before it escalates. Recently a kid kicked my older son. I saw it coming & was able to get between Bri & the other kid before a brawl started. I dragged Bri away as he was screaming

"You JERK!! YOU BULLY! NO ONE kicks my brother!"

I was able to redirect him to the swings & he got happy & forgot about that other kid.

Often though, I'll redirect but he won't forget. He will spend the whole time with the new activity plotting the other kids untimely demise & the second I let him go back to free play he will make a B line for that kid and blind sight him.

When this happens, I go into damage control mode. I immediately make Bri apologize to the child, & then I apologize to the child & explain that Brian is on the Autism Spectrum & his social skills aren't quite what they should be. I explain that the brothers are really protective of each other & if Bri thinks his big brother is being hurt or disrespected in any way, even in the course of innocent play he's going to come after you, claws & paws.

I ask them to please be patient & to come and tell me if he misbehaves. 

I have found, that more often than not, this works for us.  When you understand what you are up against, or what you are dealing with, it makes it easier to understand & deal with.

I have seen kids go from aggressive play tone it down & play in a much kinder fashion after I tell them about Bri.

Girls especially. Girls love to be put in charge & mother Bri.

Playgrounds are public spaces & I want everyone to just get along & be happy.  My kids have as much of a right to be there as yours do but they do not have the right to run roughshod over yours & I will NEVER use his diagnosis as an excuse. It will only be an explanation.

 This year was an especially difficult one for Bri & if you go back in this blog you can read all about it.

Brian's temper at this point is legendary. It takes almost zero to piss him off & he will go from darling happy child to wrecking havoc like Carrie at the Prom.

When he gets angry, he wants to make everyone around him as miserable & unhappy & will attack & strike out at everyone around him.

The last great blow up we had, thankfully I was there for & it involved him picking up a very heavy text book and throwing it at a classmate, and then picking it up again and throwing it at her again.

That one made me nauseous. I actually went & got a little gift for that poor girl & Brian picked out an "I'm sorry" card & we signed it and found her on the playground the next day & gave it to her along with a hug, and an apology from me.

Will he ever outgrow this? Will I ever get to stop explaining & apologizing? I have no idea.

We try to take it one day at a time & never lose our sense of humor around here.

New me...

Took my new hair color and decided to try some makeup styles I haven't worn in years. Namely blue eyeshadow...I think I like it. I mean, I know I like it. It's just that it's been a few years (27 to be exact) since I attempted to rock blue eyeshadow. The kids went to sleep and Mike is down in Atlantic City so I had some fun with the camera...

My concern is that I think I look cool but in reality I look like this:

What do you think?
Too much? Go for it?

Got my hair did...

My pal Acey Slade who is one of the most bestest, most sweetest guys ever is living a duel life. He's a super talented musician and has now gone into the world of hair. Last April I went to him for a cut and then, as I typically do I got lazy and it took me almost a full year to go back. This time though, I wanted a drastic change. I wanted to go blonde and so we did. Spent an afternoon with him transforming my hair from this:

to this:

I love love love it.
It's my ultimate goal to get back to here:

which is a pure white platinum (and I'd even do the purple again).
We have to be careful though, or rather I have to sit on my hands because I HATE roots.

 I hate them like a cat  hates to take a bath. The second I see them, I want to cover them up and eliminate them. Let's be honest. If Kate Moss can't make them attractive, what hope do I have of not looking like total trash when they start to poke through?!
Of course, grabbing the peroxide and doing my own hair every week or two has serious consequences and I never want to rock this look ever again:

It should be noted that this photo was taken on my 17th birthday at Tavern on the Green. Classy bitches we were...

I need to learn to make peace with brown roots and understand that I will have to live with them.
I've made an appointment with Acey to do a touch-up in a month but I have a feeling I'm going to be calling him before that. (He actually told me if I need to move the appt a week in either direction to just call)

I'm so excited for my new hair!

Yesterday I went to speak with the owner of a new bakery in Hoboken about renting her kitchen. She proposed $100 for three hour blocks of time after hours. This would work for me, only if I could guarantee orders that would bring me more than $100 worth of cookies. The plus side is that I don't have to worry about the cost of opening up my own space and all that goes with it, including the risk. The down side is that it's not mine, and I'm limited to doing catering and wholesale orders. I'm not crossing it off by any means and  will be calling her in a few weeks to discuss it further.

Today I went to take a second look at the Jersey City Storefront.
I really like it and think it could totally work. They are in the process of renovating the entire building which is why it's such a total mess. It's in a great location, two blocks from the Grove Street PATH Station and right across the street from City Hall.

Tomorrow I'm meeting with the counselor from the Small Business Association. He will help me figure out if this is a viable dream I have and if so, how to go about achieving it the right way.