Wednesday, February 29, 2012

To My Not So Little Boy

Dear Seth,

In September you will be attending kindergarten. I can't tell you how excited and scared and anxious and overwhelmed I feel. For four years I have had you, protected you, four years of living in a shell of people who love and accept you for who you are. And I know that I've given you the best beginning of a life that I could, that I was able to.

In September that will all change. Because you have changed so much, have grown so much, have become so much more than I can ever imagine. You have become. Seth has arrived. And I love him, I love you, all of you, every laugh, every smile, every tear, every badly formed word and your attempts at singing.

But what I can't tell you, what you don't know about, is it's going to be hard. I know you, I know you will push through it all with a smile, you might get frustrated at times and lash out, but you will continue on and be strong. And I love that, I love that you have that persistence. I'm just afraid that you won't tell me about any hurt going on inside of you, that you won't tell me if someone makes fun of you, or if you aren't getting things you need. I'm afraid because I'm no longer in control.

At 18 months old you went to daycare at my college so I could finish school. It was a small class, ten kids, and I knew everyday that you were loved and taken care of. Oh how you are still loved there! They ask about you all the time! When you were 2 1/2 you went to your preschool, the one you are leaving in June, and you were/are in a class of 9 kids, with five adults. And I know that your teachers and therapists and fellow peers love you. I know you are loved there. Everyone tells me, down to the bus driver and matron that don't even have you on their route anymore.

But in September I'm afraid that not everyone might love you. Because Seth, you are going to a very different place. You will no longer be with kids like yourself, kids who learn differently. You are going to be with kids who can do things you can't, kids who might realize that you are different, kids who might be mean. Things are going to get harder, and even though I know you will try really hard and do your best, I'm afraid that your best might not be enough.

And the worst part of it all is that I know you will go into it, not knowing, not understanding and that you will never, ever look at me and say "why mommy?", "why do people not understand when I speak or sign", "why are they mean?", "why can't I learn this?", "why is this so hard?" . . . . but know that I have all those questions for you, that I'm asking them for you. You might never have any of these fears, and if you do, I don't know about them. And you'll never read this, but this is one conversation that I'll never have with you. . . . and I really need to.

I could tell you it's all going to be okay . . . and I'm sure one day it will be. But this journey is going to be hard and you are going to change throughout it. I just want you to carry the love of the first four years with you when times get tough. I want you to remember that there are so many people who love you, who are inspired by you, who wish the absolute best for you.

And when you come home from that first day of school in September I'll ask you how your day was. And you may never, ever answer that question, you don't do it now when I ask, but I'll always ask, ALWAYS, so you know that I care, that I think about you all day when you are gone, that I worry and wonder and wait for you.

So Seth, life is going to change, but my love for you never will.


Thursday, February 23, 2012

Ode to Pepsi

I love Pepsi. I love everything about it. I love the fizzy sound it makes when I open it. I love the dark caramel color. I like the blue bottle with the red and white symbol. I love the way it dances off my tongue like fireworks in my mouth. I love the instant sensation of happiness (and energy boost) I get off drinking it. I could live off Pepsi if I had to. It's everything to me.

Pepsi has gotten me through some of the worst moments of my life. My first thing to have after giving birth - and ice cold Pepsi with a cup of crushed ice just in case it wasn't cold enough. I gave up Pepsi throughout my pregnancy because I knew it wasn't good. But I missed it so much.

Pepsi got me through student teaching. I would eat nothing all day but drink bottle after bottle, I was yelled at for having a Pepsi in my hand at 7am, but damn what a great way to start the morning. You say coffee, I say give me a damn Pepsi.

Why am I writing this? I just wanted to give a little tribute to one of the things I love in life, because lately I've been giving it up. GASP. NO PEPSI. None. It's so sad. . . it's tragic for me truly. But for Christmas my SO, awesome as he is, bought me a SodaStream machine. . . so now I make my own soda. Ok he is going to hate me for this because he thought this machine would replace my desire for Pepsi - it hasn't. Nothing can replicate that taste. But the machine isn't bad - I love it, but Pepsi is better.

So goodbye Pepsi. Goodbye blue bottle. I will miss you more than you can ever imagine. I will think of you when I have my first withdrawal migraines and I become the most irritable bitch known on this world.

And perhaps one day, when I have another child (or if) I will see you again, waiting for me on the other side.

So what's your vice?? What do you just love? What can't you live without?

Wednesday, February 22, 2012

The How Long Game

When you become a mom of a child with special needs, you don't know it, but you start a very interesting game, it's called the "how long" game.

The premise of the game is to see how long you can deal with all the shit, the grief, the anger, the fear, the ignorance, the stupid/hurtful comments, how long can you push it inside of you before it all comes spilling out.

I've become the master at playing this game, but I wasn't always this good. In the beginning one mention of Down Syndrome and I lost the game, I broke down in a scary heap of snots and tears and self loathing. I couldn't think of DS without crying, without an ambush of negative emotions flowing through me.

I remember I was on the bus one day, while I was pregnant, after the diagnosis, and no one said anything about DS, nothing negative happened that day, but I was listening to a song about acceptance and I broke down and cried hysterically on the bus. I couldn't hide it, I couldn't stop it, I had to let it all go. Someone asked if I was okay and I thought "how do I explain DS to them, how do I let them know all that is going on in this head of mine?" I told her I was fine, just tired, and the how long game started.

Because the how long game isn't only about time, it's about quantity as well. How much can I shove away without letting it get to me? How many stupid questions? How much hurt? How many times can I hear the word "retarded" without flipping my lid?

But the thing about the how long game is that in the end it wins. Because you can only hold in emotions for so long. You can do it for hours, days, months even. . . . but they always come back bigger and badder and they will get you.

Today Seth went to Tae Kwon Do. He started out doing one on one lessons and then he went into a class with other kids. . . and he hasn't been doing so well. But I've been his personal cheerleader through it all, saying "you can do it", "go get 'em Seth" and I just couldn't do it today anymore.

I was sitting there, watching his class, surrounded by other parents, and this one father and son, the son had just finished his class, and he was commenting on Seth. Saying "he can't run", "he's running slow", "look how small he is". . . and I just wanted to scream "SHUT THE FUCK UP". Yes I wanted to scream at a child. And all I could do was put on a very fake smile (and I'm sure everyone knew it was fake) and say "well he's trying and he needs to learn too".

Finally they leave . . . . after much commentary from this little bastard. I'm sorry but that child single handedly ruined my day. Why didn't his father tell him to shut up? Well not shut up but just redirect him. Why did my son have to be under this kids microscope today?

And then I noticed that Seth wasn't being part of the group, nor were the teachers even trying to integrate him into it anymore. It's like they gave up on him today. And you know what? I did too. After ten minutes I went in, got my son, and left. I couldn't sit there anymore. I wanted to scream, I wanted to shout, I wanted to break shit apart- I wanted to be angry but I played the how long game.

It wasn't very long. We walked the two minutes it takes to get home and he decides to knock on his grandmother's door. So I hear "How did Tae Kwon Do go?". "Great, Seth did awesome." . . . . how long. Go upstairs to my apartment, Seth didn't want to go in, he wanted to hang out in the hallway, finally get him in . . . . and as soon as the door closed I sat on the floor and cried.

It was that silent sort of cry, the one where tears and tears pour down but you have no voice, no sobbing, no whimpering, just tears. And through all of those tears Seth just hugged me and sucked his thumb. I lost at the how long game.

Usually I can hold it in until Seth goes to bed, or I have a minute to myself, but I couldn't. And I couldn't imagine that my son was comforting me when I was crying about him. Did he even know? Does he even understand?

The thing about the "how long" game is that it becomes the "how much longer" game. How much longer can I go through this? How much longer do I have to feel all this pain and hurt and sadness? How much longer until he learns this or does that? How much longer until bedtime so I can breathe a sigh of relief? How much longer until I'm no longer plagued by these emotions???

How much longer until I completely lose it?

I don't know but I'm sick and tired of this fucking game.

Friday, February 17, 2012

Why I suck the joy out of everything

I don't suck the marrow . . . I suck the joy . . . out of everything.

Many people out there must wonder if my life is good, if I'm happy, if I'm not some depressed stay at home mom sorely in need of friends. Well I'm not. But I am a 29 year old woman who has grown up and seen shit that no one should have to see, gone through the bad and the worse and they tried to pretend it wasn't my life. I've been through hell and back and I made it baby. I'm still here. I ain't going nowhere - Brooklynese!

So what happens when you've gone through it all?? You don't always see the good, you don't always see the beautiful . . . you see the beauty in the bad, the graffiti as art, the glitter in the sewer water, the way the sun sets over the F train on McDonald Avenue as it rumbles on by and you're almost sure the Earth is going to quake and open up and suck you down to Hell.

I like finding the positive in the negative. I think it's real. I think when I've had a bad day I can say well hey I gave a dollar to that homeless person who just happens to live by the Dunkin' Donuts around the corner from my moms house. Or Seth may have the stomach virus and a sinus/ear infection (totally true btw- this was last week), but at least we aren't in the hospital like other kids. At least he is living. At least he is at home with the ones he loves. I can pass by my childhood home and find my brothers tags all over it and instead of thinking of it as graffiti I can say, hey I remember that. I can look at that house and remember and say there was bad but there was also love and good. There was domestic violence and drinking but there was hugs and 2 little boys and 4 girls who once upon a time loved each other something fierce.

And with Down Syndrome I can say it all sucks; the doctors, the hospitals, the sickness, the therapy, the hurt, the anger, the resentment, the jealousy, but then I would be denying the very special little man that comes through all of that. I won't deny the pain, the pain is very real, and it hurts so bad sometimes, but I can't deny the immense overwhelming feeling of love.

Seth is an amazing child. I adore him. I love him beyond anything I have ever loved. I love his little tubby body, the way his smile is so wide and his eyes crinkle. I love the crease on his palm and I LOVE, LOVE, LOVE his eyes. The one feature that is the most recognizable that he has Down Syndrome and I love it.

My life seems to have a running theme. . . love through imperfection. I come from a most very dysfunctional family . . . and I love them. I talk to my mom everyday and we have enormous differences. We are black and white, night and day, different pieces of a puzzle that was never meant to go together. My sisters, all three of them, so different, each going through their own struggles, each with their own quirks. I love 'em. Especially my girly, my little sister, whom I can never express how much love I have for her, how much she is a part of me. I love them despite it all. I love them because I've been through hell and back with them and there are no people in the world I would rather do that with. My two brothers, one gone, one still here, both as imperfect as can be and I love them. And my dad, my dad the alcoholic, the person who both created my life and perhaps ruined part of my life as well and I still love him. I can't not love these people, just like I can't not love Seth.

So this blog is about the ugly, the negative, but don't think I don't love my life. I'm living, I have an awesome child. This May will be ten years with my SO. We may not have it all but we can see through all the imperfect and realize we have exactly what we need. Seth may not be the child we asked for, the child we wanted, but somehow he became exactly the child we needed. And there is the positive in the negative.

You can't always get what you want, but if you try some time, you just might find, you get what you need.

Thursday, February 9, 2012


I didn't have a lot as a child. I had all I needed and for that I'm thankful and I realize others didn't even have that.

So what was missing? What still is missing?


A sense of a place you stay, a place that doesn't change, a place with nice things. Growing up my home was filled with hand-me-downs, garage sale finds, flea market steals and yes, the garbage pickups from rich neighborhoods.

And with an alcoholic father, a lot of those things, those used items, never stayed intact. I grew up in a broken home, quite literally.

Tradition is a word that's not really part of my vocabulary. What traditions did I have growing up? Was there anything in my childhood worth holding onto? Is it worth it to look back?

So when I hear/read about people who have all of these traditions, all of these memories, all of these heirlooms and things they cherish from their childhood, it angers me, it saddens me, it rocks me to my core, it reaches the little girl inside who wished for all of those things.

I had to start from the bottom and work my way up. There are no heirlooms, no money from family to help us get started, it's fend for yourself baby. And fend we did.

Looking around my bedroom I have bookcase given to me, a bed that is sorely in need of replacement, mismatched furniture and decor - it's mine, and for that I'm proud, but I wish it were more/better.

Because home is supposed to be where your heart is and my heart is not invested in this place, something that feels more like a rest stop than the end of the journey. Living in apartments just doesn't cut it, it doesn't feel like home. I imagine home will be the first place I pay for with money out of my pocket, with all of this pride and feeling of accomplishment.

And I know that this has been a long time issue of mine, but no place has ever really felt like home. And that has so much to do with my very poor childhood. I remember growing up my brothers and sisters had a phrase- it was "I hate this damn house" and later on it was "I hate this fuckin' house". And if I listen really closely in my mind I can recall all of my brothers and sisters saying this and their intonation and the look on their face when they said it.

When I was about 13 we moved to a new home and we all had our own rooms and my dad thought that it would change us, that we would be happier. And for a while we were. Within the year in our house you could hear us say "I hate this fuckin' house". And I completely believe with all my heart that it's because we moved, but our struggles came with us.

I live about 10 minutes away by bus from my childhood home. I often pass it by and can see all these moments and happiness and sadness. And I still say to myself "I hate that fuckin' house, I wish they would tear it down". And it's still the same ugly brown color my father painted it - after all these years!! Please paint it a different damn color!!

While I want to move on in my life, I want to find a home, I have to realize that I can't forget where I came from, I just have to reconcile myself with what happened. And maybe one day I'll be able to find my home and start my own traditions and perhaps our Star Wars collection will be our comical answer to the idea of family heirlooms.