Sunday, December 23, 2012

Dearest Santa

Dear Santa....or let's just be real here....Dear God,

When I was a child I didn't write letters to Santa.. I prayed. And yet I feel like I need to write one now... because well it's one day before the big day and I'm no where near in the jolly, holly spirit.

Dear Santa,

This year for Christmas I would like my family to be together. I want my child's father to realize that he still loves me and for us to get back together. I want to be home, my home, the home I called home for the last two years instead of this new home. I want to wake up Christmas morning warm in bed with my spouse instead of a very needy son who doesn't understand why Santa didn't bring him that many gifts this year. I want to make chocolate chip pancakes even though I hate them to death and watch my son and spouse eat them with gusto. I want to rip open every present and know that each one is somehow exactly what I want even though I didn't realize it myself.

I want peace. I want to not feel like my soul is ripping in half for the last seven months. I want to know who the fuck I am and be comfortable with it. I want to not question everything I do or say or think or want or know. I want to look into the eyes of the person I thought I loved and understand why they don't love me back anymore.

Some days I just don't want to be. Some days I want to curl into bed and never ever wake up.

Help me Santa. I can't live in this pain anymore. I'm so sad all the time. I have no more tears left and yet they keep falling. I keep falling down further and further and I don't know where bottom is.

Most of all I want to keep strong for Seth... because he needs a mom who keeps it together everyday, even though her heart cries out all of the time and tears flow freely into her pillow every night.

So this Christmas can you send me a mask...a mask of a happy face and heart.... just for one day Santa. I only need to make it through one day. But it's been a long December and I'm really, really tired and I don't think I have it in me anymore.

Love,
Shanna

Sunday, September 30, 2012

Judgemental

A lot has been going on with me, so much that I wish I could write here but just can't for certain reasons. I've been logging it in Word so I can post it later. Maybe a small book is in order??

A friend, a good friend, my best friend in fact, pointed out that I was judgmental and critical. In fact she was there for me the other day in such a time of need and I did nothing but insult her. I didn't do it intentionally, I didn't do it with malice in my heart, I just didn't realize I was doing it. And I don't know why I do it, don't know why I automatically seek out the flaws in people. Perhaps it's a defense mechanism, perhaps if I do it first it means that I've won some sort of sick and twisted game and it means that people can't hurt me because I have somehow found out their weak spots.

Whatever it is . . . it's fucking wrong. I'm wrong. I talked to several friends/family members since my best friend broke up with me, yep I ruined that and I can't get it back, don't even have hope to get that friendship back. I hurt someone who has done nothing but have my back and be there when I needed her help most.

I can't take back what I've said, I can't apologize to the point that she will forgive me. . . but I can change. And even though I can go through life and say I'll never say a nasty thing to anyone ever again, and I'll probably do that, I have to start first with the thought process. Why do I do this? What about me makes me target everyone's weak points? Why do I look outward instead of inward? When did I become so ugly inside?

And it's hysterical to think that I'm judgmental because I have a child with Down Syndrome. Just one of those other strange things in life. The fact that I have a child with DS that I don't judge, yet I judge everyone else is so strange.

For years I have told myself that I don't care what I look like, that I don't care what others look like, that I don't judge people by their actions. . . I do. I think we all do, but I'm really bad about it.

I'm trying to think back, to think if there was a time that I didn't do this, a time that I didn't judge people.

There was.

It was around junior high school. In junior high school I was made fun of and tortured for three years straight. I didn't have the nicest clothes, I had dandruff really bad, I was a Jehovah Witness, I was too different for everyone else to accept. I was too different for even me to accept.

And since then I've judged people. And some people think I don't judge myself, I do. Here I am 29, single mom of a child with DS, jobless, missing so much,  . . . I do judge myself.

It's just that at the end of the day I know I'm a good person. I know that I'm smart and funny and pretty. I know all of my flaws too. . . and for the most part I accept them. I know that I'm really bad at apologizing. I know that at this moment in time this blog is probably the only place I can vent or feel about anything. There is no other safe place to do so.

I've lost so much and I don't want to lose more. I don't want to alienate those who are helping me.

So I am now going to watch my words very carefully, try to configure my thoughts, perhaps therapy is the place to do it. I've spent five years ignoring the person I am. . . and that included the good and the bad. They are both coming out and it's not always pretty, but it is me. . . and I'm trying.

And I'm sorry. . . truly heartbroken sorry. . . and I know that will never be enough. . . but I am.


Tuesday, September 18, 2012

Upwards and onwards. . . to wherever. .

Fear is a funny thing. . . we become complacent, we become comfortable, being these masses just sitting and not achieving.

I've noticed a big difference in myself since my ex and I broke up four months ago. This is a Shanna who is walking on different, new ground. I've done new things, things I never, ever thought I would do. I've done things that I thought were against everything I was, everything I normally stand for and do.

I wear makeup now. I do my hair everyday. I take care in how I dress. I lost 30 pounds. I wear ruby red lipstick. I make plans with friends and look forward to them. I walk everyday for at least an hour. I do all of my dishes. . . okay most of the time anyways. I've stopped playing video games completely. . . I don't know why. I do love video games, they just seem to have lost that sparkle.

I eat right. I drink water all the time now. I'm almost over my extreme soda addiction. I've stopped using tons of salt on my food. Junk food doesn't appeal to me much anymore. I watch my favorite television shows alone. . . the ones we used to watch together. I don't yell anymore. I've stopped crying for the most part.

So onwards and upwards for me. There are so many people who tell me that I am strong, that I could sit here and be depressed and be stagnant and not become or do anything. . . and that's just not me. That's not how I handle life. Life comes at me and I fight back. I fought back from the minute I came into this world. I don't accept life as it is, at least not anymore. I did for the last five years, in a lot of aspects. In one particular aspect I didn't. I didn't accept all of the "truths" I heard about Down Syndrome, never believed that my son wouldn't amount to anything. I didn't accept it. I worked so hard to change that for Seth, and I believe that I have.

But what I didn't do, what I failed to do, is to make those same aspirations for myself. I lost the Shanna that was. . . and that's just sad. I don't want to see other women do that to themselves. There is nothing in this world so gloriously wonderful that you lose yourself in it, in them, especially not some ex douchebag who thought someone else was better than me. I'm fuckin' awesome. I raised/am raising an awesome child with Down Syndrome who can do anything. I've read almost everything by Shakespeare. I can write. . . forever. I can crochet. I'm a damn good cook and baker. I'm smart. I'm funny. I'm so adult yet so much a child all at the same time. I'm a deep thinker. I have a great dysfunctional family that loves me even though they are beyond fucked up. I go to therapy twice a month because I know that I'm not perfect. Admitting that is pretty damn awesome.

As for my faults. . . I have those too. I'm not patient. . . at all. I worry too much. I'm timid and sometimes over-analyze everything. I'm passive aggressive. I don't do my dishes all the time. I'm the biggest procrastinator known to mankind.

But I'm better. That's the great thing about me, I just keep getting better. My ex is still stagnant. . . he's the same man I fell in love with ten years ago and the same asshole I'm falling out of love with now. Yeah I still love him, but not for long. We are supposed to grow and change. . . supposed to learn. . supposed to get better. . . and he just didn't. I should have seen it sooner.

A lot of people are comfortable with life, they hate change. And this is the biggest change my life has seen as of yet. . . I'm sure there are many more to come, but this is the biggest. And I thought I would die about 3 months ago, thought I would never, ever make it through.. and there are some days that I still feel like dying. . .  but I'm better for it. Better Shanna is on order, delivery is really slow, but it's definitely on the way.

Onwards and upwards. . . to wherever life takes me. . . honestly I used to think if I had Andrew the whole world was fine, now I realize if I have me and my son, then that's all I really need. The world could go up in a blaze of glory but if I have Seth with me then I'm good.

Monday, August 20, 2012

a glimpse into the past. . .

I have been having Seth's medical records sent over to his new ENT doctor because he is having ear tubes done . . . again. Hooray for annoying procedures that take 15 minutes yet require 5 million years of medical history and paperwork. Fuck the Earth, I think Seth's killed most of a forest trees with his medical paperwork. Sorry forest.

And so I found it. . . Seth's amnio record. I never held it in my hands before. . . NEVER. I knew what it said, knew what it meant, I just had never seen it on paper. . . and not only did I never see it on paper, I never remembered my amnio or diagnosis date. So now I know. . .

On August 15th 2007 I had the test that forever changed my life. I had the amniocentesis that told me that my child had Down Syndrome. I wasn't scared that day, I was excited because I just knew my kid didn't have DS. I lied to myself. . . I knew. . . looking back I did know. And I've never really discussed this with anyone. I can't explain it but I had a feeling that Seth was different. He didn't move around in there a lot, I didn't get sick like people said I would, it was a very different pregnancy.

When that first blood test came back telling me that my results told me I had a 1:100 chance of having a child with Down Syndrome I didn't know what to say or do. It was over the phone. . . and it was not scary, it was confusing. See when you don't know what to expect you just cry. I cried, hysterically. What else was I supposed to do? I was 24 and had no idea about having a kid and then I was told that my kid might not be normal. I called my mom and she told me not to worry, that the test was wrong a lot. LOL. I'm laughing looking back on that memory.

There I was, sitting at the kitchen table, writing down all of these numbers, all of these ratios, and suddenly I had all of these choices. Amnio or CVS? or wait for more bloodwork? Termination or continuing to term? More personally, "would I still love him?", "is he still mine?"

The amnio itself was one of the best experiences I had during my pregnancy. I got to see my baby. I got to see him so big and so grown inside there. And as I looked at that screen I knew I had already made my decision, he was mine and I wasn't letting him go anywhere. And you see the big amnio needle on the screen, literally so close to your baby and you think "omg" and you feel this chest pain that is unlike anything I've ever felt before that moment, and at that time you know that you could never, ever bear to see your child hurt. And Seth, somehow knowing my fear, pulled his hand back away from that needle and I thought "wow, he already can understand me, feel my fear for him". It was an amazing moment, I'll never, ever forget it.  


Seth was my baby from that moment on, from that moment that the ultrasound technician put a little XY on the screen and my mind screamed "OMG I'm going to have a little boy", a little boy that will love Star Wars and Jordans and will have straight brown hair and brown eyes. (yes to the hair, no to the eyes).

My imagination brought me places I never thought were possible and I knew that I loved him more than anything else in the whole world. That I was no longer important in the scheme of things. That termination wasn't ever an option. . . no matter what.

I want to say the date of Seth's diagnosis, or when I heard it was August 22nd 2007. It's somewhere from the 20-23rd. It was the phone call that changed me forever.

And I wish I could say it's been an easy, beautiful journey. It's been a journey, it's been beautiful and horrifically ugly at the same time. It has forever changed me. My heart isn't the same. My heart feels like it's swelled four times its size in my chest. And it's all filled with Seth, with love and understanding and patience that was never there before.

And I can't imagine a time before that, a time before Seth, a time when I dismissed the beauty and joy that is life with him.

I will never be the same again, but I don't want to be.

Unity by Shinedown

I’ve seen a million miles
Met a million faces
Took all I knew
To reach all these places
And I’d do it again
If it brings me back to you

So have you ever been caught in a sea of despair?
And your moment of truth
Is the day that you say “I’m not scared”

Put your hands in the air
If you hear me out there
I’ve been looking for you day and night
Shine a light in the dark
Let me see where you are
‘Cause I’m not gonna leave you behind

If I told you that you’re not alone
And I show you this is where you belong
Put your hands in the air
One more time

I'm not scared. And I'd do it all again to have Seth. And he belongs here, on this Earth, with me.

Monday, August 13, 2012

lost dreams

Unfortunately, since I am part of the Down Syndrome community, I heard that Kelle Hampton is pregnant.

And while I can honestly say that I wasn't jealous of her in my previous post/posts, I say with 100% truth that I am now. . . .and that has nothing to do with her being Kelle Hampton. It has everything to do with her having something that I so desperately want. . . a normal life.

You see I didn't have it all, but I had something. I had my fiance. . . and now I don't. Now I don't even have the dream of possibility. I'm 29, I have one child with Down Syndrome. . . I'm a single mom of a child with Down Syndrome. Finding someone to create a new dream with is almost impossible. I don't even know where to start.

I'm angry that her happy pregnancy has rained on my parade. Fuck that, this is no parade, you just added rain to a lightning storm and it fucking sucks. It sucks balls. Big ones. Big hairy ones. Big, hairy . . . well you get the picture.

I always told people that I was fine with just Seth, just one child. . . the truth is I'm not. I long for a normal pregnancy, a typical child.

I wanted to feel a child kick within me and not worry about how many chromosomes he had, whether he would have a hard life or not. I wanted to enjoy the magic of pregnancy. . . the joy that can't be destroyed, not with a thousand swords.  (That was totally from The Princess Bride)

I haven't ever had one normal or easy thing in my life. NEVER. And I wonder if I'm even worthy and if that is maybe why I don't have these things. I just want something that isn't tainted by life. Something that isn't scarred or marred or second hand or fucked up in some capacity. . . it's like buying a new dress and coming home and seeing that the zipper is broken. All the zippers in my life have come broken, shit some dresses didn't even come with zippers. And as much as I can tailor my life . . . sometimes you just want a new dress that you don't have to fix.

I long for normalcy in so many facets of my life. I was supposed to raise my child with two parents, two parents who loved each other. I failed him miserably. Not only does he have Down Syndrome, now he comes from a single parent household. I didn't want that for him.

I can't help but feel that I'm failing here. That I've missed something. Normalcy used to not be important to me but now it is. I don't know why I crave it so much but I just really want it. I really want to know what it's like.

I had the opportunity to create the perfect family that I never had. And now I will never have it. Ever. And the loss of that is a very real loss. The pain is very real.

I can't wait for this next year of my life to pass very quickly.

Wednesday, July 25, 2012

callouses

I was looking at old pictures today, pictures of Seth being born, Seth growing up, I literally have 30 gigs of pictures of my son, and I noticed that I have become a little bit calloused.

I've grown some barnacles around my heart over the last few years and I did so to prevent getting hurt further. I did it because Seth needed a strong mom and I had to be a strong mom. I did it because I had no other choice. It was either get through life or life would have eaten through me. So I built a few walls, a few defense systems that I wasn't even aware of until looking at those pictures.

You see those pictures show a very fragile Shanna. A Shanna before she knew what Down Syndrome, what raising a child, what running a house, what paying bills, what finishing school with a child with special needs, really meant. It was a Shanna before the broken one that sits before this laptop today. It was a Shanna that had no idea what was coming for her. It was a Shanna before her fiance of 10 years broke up with her for some other bitch. It was a Shanna that I both envy being and am entirely terrified to think about that point in my life again.

Because I look at this pictures and think, "Wow I knew nothing back then." And I am sure one day I will look at pictures from my daily life and think the same thing.

But what bothers me even more is that Shanna back then was one that let people in. She let people know that she was hurt, that she struggled, that she was terrified of life and didn't want to do it alone.

This Shanna that sits before you puts on an act. It's the "I got this" act. In fact those are words I use all of the time. I got this.

You know what? I don't fucking got this. I don't even remotely have this. I'm so lost at this moment in my life. I wish I knew what "got this" meant. If it means that I am finally at a place where I understand all of my sons emotional and medical and physical needs, then by all means yes I do "got this".

However if it means that I have any idea about life or what it all means or where it is all going - well then I definitely don't got this. I don't have anything.

Shanna now doesn't let people in. She tries. She really does. But not really. I mean how can you sum up 5 years of straight struggle and pain that never seems to end. How do I do that?

How do I at the end of the day do anything but feel like I just need to be stronger, just need to tough out one more day, just get through this one doctors appointment, this one conversation, this one second, just to move onto the next one?

How do I do it?

I build callouses. I'm so calloused. I go the ER with Seth and I think "oh this again, hey Hector". Hector is one of the head doctors at our local ER and knows Seth by name. Another doctors appointment - hey Dr. How is your wife/husband/kids? Callous. Just not really realizing the gravity of what I do on a daily basis. Not thinking that it really matters anymore. How can it when I've done it so many times before. See the specialists every 3-6 months and get more and more bad news. That's my life.

Another surgery/procedure. Sure I can do that. Sure why not? I don't cry anymore about them. It's like I wasted all my tears in the beginning and I can't do it anymore. I want to cry, I know I should cry, but I can't. I cry over the fact that I'm so hardened by this life.

I see babies and instead of joy I'm angry. I'm angry that I didn't have that experience with my child. I'm angry that instead of enjoying my child I have to constantly worry every second of every day for the rest of my goddamn life. I'm angry at teenage moms who have normal kids, I'm angry at moms who do drugs and drink and have perfect pregnancies.

I'm angry that I'm doing everything right and getting fucked over in the process. Wow this is such an angry blog, such an angry post. Such an angry Shanna. Such a really pissed off calloused woman.

I didn't intend this post to come out the way it did. I don't know what I intended but it wasn't this amount of hurt and anger.

I mean how do I let it all go? How do I start chipping away?

I mean I thought I had enough problems having the brother who committed suicide, the alcoholic father, the narcissistic mother, the fucked up family/childhood, the child with Down Syndrome, but then the one person I did have left me. And how do I not build callouses????? How do I even think of opening up the world of Shanna inside again?

I have no fucking clue. I really don't. Shit I don't know if the Shanna factory is opening for a very long time. I just want to go into a shell and never come out.

And many people will ask why I write this blog. Because I know somewhere in this vast world there is someone that feels EXACTLY like I do. That I'm not writing this in vain. That I might connect with someone who thinks "wow she gets me, I'm not alone". You aren't alone. I'm hurt, I'm suffering, I'm here, hi, I'm Shanna.

And ultimately it's therapeutic. If I write this one blog post and cry my whole way through it then I have gotten a weeks worth of tears out and can now move on to being strong another day. I can pick myself up tomorrow and deal with whatever it is that needs to be done, even if I can't do it tonight.

Goodnight all.

Sunday, July 15, 2012

I love you

Those three most important words. I love you. I luv u. I looooovvveee yoooo. I wuv u.

So many ways to say it. I even sign it in my house to Seth. He signs it back and says "I uv u"

We say it to our kids, to our moms and dads and brothers and sisters and spouses, hell even our dogs and cats, but when, when do you look in the mirror and say "I love you self".

I know I don't. I know so many people who don't even pass by a mirror everyday. They stroll through life not realizing what they look like to themselves or to others.

I know because I was that person. I've been that person for a long time.

I lost what I loved about myself . . . or I just really forgot. I forgot what made me . . . well ME.

I have a new therapist now but my old one suggested I look at my face in the mirror everyday. And you know what surprised me most about that task??? That it was hard. It really was. I didn't want to look at myself in the mirror everyday.

Because looking means acknowledging, acknowledging means accepting, and accepting means loving.

And I wasn't ready to love myself again.

But something happened two months ago. . . two very long months ago, when my ex fiance and I broke up.

I realized that to get back into life again, to find someone who would love me for me, to be at peace with my life again, I would have to start caring and looking at that girl in the mirror.

I would have to finally worry about me.

What do I look like? What do I want to change? Who do I want to be? Why do I want to be that person? What do I like? What do I love? How do I learn to love myself again?

After a breakup we see all of these flaws. I saw all of my flaws. I'm too fat, my hair is frizzy, I have bags under my eyes, my hair needs to be dyed, I need to shave my legs, I want more tattoos (ex never did like 'em), I want to wear a dress or skirt, want to wear makeup and jewelery.

Suddenly I had a starting point, I had an idea, at least physically, of who I was and what I wanted to change about myself. I started with my weight. So now, two months later, I weigh 20lbs less than I did. . . and I'm going to continue to lose more weight.

I dyed my hair, bought a razor, bought that callous remover thing for my feet (love that thing!), am planning on getting at least three tattoos in the next year and do plan on a whole new wardrobe when I reach my first goal weight.

And I'm able to look in the mirror and say "hey that kind of looks like the Shanna that I used to know". Do not even mention that song because I hate it . . . . you guys know which one. Oh fuck it's in my head now. "Somebody that I used to know . . . . " ARRGGG.

And so with all the physical changes next I thought - ME I WANT TO CHANGE THE INSIDE TOO!!!

I want a job, well career, and a bank account. I want to learn how to drive. I want to learn how to dance- no headbanging, I do that well enough as it is. I want to write more. I want to take more pictures. I want to read Shakespeare until my eyes bleed. I want my Master's Degree. I want to teach kids and make a difference in their lives. I want to adopt a child with Down Syndrome and make their lives better. I want to keep my bleeding heart because I love that I care about things that others don't. I want to be a better mom. I want to be a better friend. I want to not be as messy and start cleaning more. I want to learn how to cook even more healthy foods. I want a man that isn't a selfish asshole. I want to own a home. I want to go for a vacation to Disney World with Seth.

I want . . . so much more than what I was settling for. Why? Why did I do that to myself?

I thought about this. . . . for a long time. How could someone love me . . . if I didn't love myself?

And in so many ways that is why I don't always feel angry at my ex. . . I feel angry with myself.

I was so much more, have the potentially to be so much more than what I am. And I will be more.

And one day when I face that mirror, it may be one year from now, may be many. . . I will tell that woman that I love her. And it will be the truth.

Wednesday, July 11, 2012

on being strong

Earlier this morning, as I sat hunched over the porcelain God and begged for death to come, I thought about being strong. Stomach virus from hell, puking up my guts, not able to take care of my own child, and I was all alone.

My biggest fear had come to life. So this is what single motherhood is like sick. Strength to continue puking, strength not to shit my pants(failed that part), strength to clean up my own mess, strength to ask for help.

I don't like asking for help, I hate it, but last night, approximately one hour before I tossed my cookies and knew I was going to be very ill, I called Seth's grandma, who lives just downstairs and thankfully she took him so I could get my vomit on in private.

This poor woman is now downstairs, vomiting herself, Seth just had to share the love!

And the one thing I thought about most was how I wished my ex were here because I didn't want to feel this sick on my own. I told him that on the phone because I had started crying and he asked me what was wrong. I felt so pathetic. But it was the truth.

Is true strength knowing that you can't do it alone, or hell that you don't want to? Is true strength admitting that sometimes you just want your ma to hold you, or hell even your ex, and say everything is going to be alright?

Is true strength knowing that we are weak? If true strength is recognizing your weaknesses then I must be Herculean. I have never been at a weaker place in my life than I am now. I'm at this edge, looking down at my life, seeing all that was and seeing all of my faults, all of my mistakes.

It's amazing the revelations that are made with three hours of puking. As I leaned over that toilet bowl I prayed to God to help me and I knew it wasn't just about me vomiting half eaten Chinese food from the night before. It was everything. It was the culmination of my whole life and the realization that I do need His help.

And I am not one to say that I heard God speak to me, but there was a voice in my head saying "this too shall pass".

It has been a mantra of mine for a while now, since Seth was born. There was so much going on in that time that I kept telling myself those words. When I gave birth to Seth I told myself that physical pain is fleeting and that it went away.

Emotional pain is so much harder but it does eventually fade away.

So much for being strong, I am weak, but it reminds me that I am human.

Just like every time we all find ourselves praying over the porcelain God.

Sunday, June 10, 2012

being a single mom

Wow there it is. I'm a single mom now.

I never thought those were words I was ever going to say or type or think, but I had the realization last week that I am now a single mother.

And everyone has different definitions of what a single mother is and what it means, but I think that as long as a mom is separated from her spouse, the father of her child, then that makes her a single mother.

Honestly it doesn't matter how much the dad helps out or does or doesn't do or how much money he gives . . .  it really doesn't.

I realized this yesterday. I realized it when it was 11 p.m. and Seth refused to go to bed and I was exhausted. There was no one there to help me with that. My ex fiancée (I'm still not really sure what to call him yet) moved out, actually he moved in with his new girlfriend but that's a whole different story, and he wasn't there.

There wasn't another person there to be my support system. I had to deal all alone.

Scary stuff. Very scary.

Like what do I do when it's 3am and Seth has to go to the ER??? What do I do if I'm sick and can't take care of him?? What happens if there is an accident and I get hurt and can't get help?? (BTW this is totally my anxiety getting to me but this is the shit I think of at 3am when I can't sleep!)

How do I move on knowing that I'm alone in all of this? That my best friend left me for someone else? That I can no longer trust and/or rely on anyone ever again???

FUCK THIS SUCKS.

I'm sorry, it had to be said. Being a single mother sucks. I'm not going to candy coat this shit. I'm two weeks into this and I'm totally lost. I don't know how to do this. Further more I don't want to do this alone.

And the worst part is that when I lost my fiancée, I lost my best friend, the one person I could talk to, the one person who knew so much about me that it hurts to think that I can never be that close to anyone ever again.

So every night I'm alone and he's there, with his new girl, and he has someone to vent to.

Who do I have to vent to?

Well I have this blog. . . . I have friends and family . . . but I don't have that one person anymore.

Because to be truthful, I'm a soul-mate, one person per lifetime kind of gal.

So imagine being me and after ten years realizing that it's not true, there is no one person, or if there is I somehow fucked it up royally.

My one person has flown the coop. And I don't know if there's another, don't know if I would ever even consider another person.

And now, NOW, I come with all of this baggage. All of these extras that didn't come with the Shanna package ten years ago.

I come with a child, a child with special needs, a child with Down Syndrome.

I come with hurt and pain and fear that this may all happen again, that I may waste another ten years on some asshole who never loved me in the first place.

I've never had a broken heart before. It's nothing like the movies. People don't magically fall back in love after heartbreak, heartbreak is like a disease that just won't go away.

So back to being a single mom. Yeah I haven't been the best mom to Seth these past four weeks. I've been quick to anger, tired, down in the dumps, I've been HURT.

And the other worst part of it is Seth. Seth feels it. He's so smart, he is so intuitive, he's so . . . Seth. . . . that he knows that life is different now.

He's been clingy, not eating, not sleeping, crying, worried . . . and I have all of that guilt. And I have to deal with it every single day from now on.

And truthfully I don't know how to deal with both mine and Seth's pain. I just don't.

So I'm taking it one day at a time, one minute, one moment, and I'm trying.

I'm relearning how to be a mom, all on my own.

Wednesday, May 30, 2012

on anxiety

Mental illness is not something that we readily speak about as a society. We'd rather push it back in the furthest recesses of our minds, somewhere it doesn't bother us.

It's disturbing to think of mental illness, to think of schizophrenia, addiction, bi-polar disorder, major depressive disorder, paranoia, narcissism. . . . these are hard things to discuss.

And you know what?? I know someone who fits each one of those diagnosis'. Family, friends, I grew up around dysfunction . . . . or so I thought.

But it's not dysfunction . . . it just wasn't spoken about. So many people suffer in silence, so many souls are crying out in pain just wanting to be validated and knowing they are not alone.

So here I am . . . writing on anxiety.

Because I have it.

I go to therapy every week.

I deal with panic attacks.

I deal with being scared and lonely and afraid and worrying that I'm crazy all the time.

But I'm not.

I'm just like you.

I just worry a lot and think about stuff way too much. I obsess over things. I make things catastrophic in my mind. And I worry about being sick all the time. That's my biggest fear, being sick.

So why am I the way I am??

I think I've mentioned it before, but I'll mention it again, I grew up in chaos. I never knew what to expect. I never knew if my father was coming home drunk or sober, if my mom would snap at us that day, if my brother would go to jail again. . . There was so much yelling and screaming and violence in my home. . . I saw so much, I saw too much.

And I can't take it back. I can't go back to that place and tell my younger self that it's okay, because it's not.

But it's created something of a monster inside of me. I need to be in control all of the time. I worry when I'm not in control. I worry about events that are out of my control.

And lately my anxiety has been through the roof because I separated from my fiance of ten years. And I don't want to be ashamed of it anymore. I can't be. It's part of who I am.

So what a few times a week or month I wake up clutching my chest and reeling from nausea?? And so what if I can't control every little thing in this world? And so what if my heart is broken right now? It will get better. . . I will get better.

I just don't want to do it alone. . . and I encourage all of you to find that person in your life, the one who you know it struggling from depression or anxiety or something else, and tell them that you are there for them. Tell them that you love them. Tell them that you will be there for them.

Because that is the best thing you can do for someone who is coping with mental illness.

And I would like to take this chance to thank everyone who has done exactly that for me.

Thank you,
from the bottom of my heart

          <3

Tuesday, May 15, 2012

on saving memories

This post is heartbreaking for me to write. Incredibly painful . . . more painful than anything I have ever had to deal with when it comes to Seth and Down Syndrome and even my brothers suicide.

This post is about the end of my ten year relationship with Seth's father, a man I always thought I would love and trust, someone I thought I would be with forever.

And it's over.

It's done.

There's no more.

There is so much that I can say, so much to be said, about why we are no longer together. We both made mistakes, I'm 29 and I don't play the blame game. We are both hurting, we are both sad that this is the way it is.

And I'm sitting here sicker than I've ever felt, I can't eat, can't sleep, can't think straight to clean or do laundry or try to untangle the mess of thoughts flowing through my head.

But last night, as I was trying so hard to fall asleep, I started remembering. . . .

remembering all those great times together.

And for once throughout this whole process, I wasn't sad, I didn't cry tears of sadness, I cried them of joy.

Cause we had some good times together, some damn good ones.

I remember the first time I met him and I was attracted to him instantly. . . it was magical. The first time we kissed, he didn't kiss me on the mouth, he kissed me on the forehead and it was wonderful.

The day we spend in Chinatown just shopping and laughing, then we went to little Italy for lunch and instead of being upset that lunch was $75 (a lot for us in our young age), I paid the bill with the last of my check money for that week and enjoyed a nice meal with him. We went back to Chinatown, but not before he bought me a Gamecube. No one had ever done anything that nice for me before.

I remember the first time we really went out to eat, we went to a pizzeria in Park Slope, a famous one, great pizza, and he spilled his drink all over my lap and I didn't care. We went to Prospect Park afterwards and met up with some of his friends.

I remember summer nights walking late at night, midnight, 1am, 2am, it didn't matter because we were together. We would walk everywhere, just talking, just being together.

I remember when we came home from the hospital without Seth in our arms because he had jaundice and we were hysterical holding each other.

I remember the movies, we loved going to the movies, all of the movies we've seen over the last 10 years, all the Star Wars and Spider-Man and action movies and geeky stuff that we've seen.

And I thought to myself last night, I'm going to write down each one of these memories and put them in a box somewhere. Because I don't want these memories to be corrupted by what is going on right now. I don't want those memories tainted. They are good. They bring me back to happier times.

I'm reminded about something that Rachel Coleman wrote in her blog, I forget which exact post it was, but it was something akin to "we stayed together because neither of us wanted to do it alone". She said this about raising her daughters Leah and Lucy, both who have special needs.

And truthfully I think that is what happened here. We stayed together because raising Seth apart would have been beyond difficult.

Those first two years were so hard, there was so much going on, neither of us could have done it alone. Neither of us wanted to do it alone.

And that is not a good reason to stay together, it never is, but it is what it is, we are here now, and five years of dealing with Seth and Down Syndrome combined with all of the problems we faced before I got pregnant snowballed to this point in time.

Am I okay?

Not today. Probably not tomorrow. Perhaps not next month.

But I will be.

And that has to be good enough for me right now.

Sunday, May 13, 2012

on becoming a mother

So I wrote my post on Seth becoming a real boy, here is mine on become a mother.

And for the record, a mother is not always the person who births a child. A mother is so much more than that. A mother is one who nurtures, loves and protects a child, whether or not that child is biologically hers.

I suppose I became a mother the minute Seth was conceived, that's how I view life, in terms that it starts at conception. Although technically I was a mother, I wasn't a mother in my heart, in my soul.

I never believed in maternal instinct, I still don't, it was always something that seemed to be missing from me. I never played with Cabbage Patch Dolls and babies like that, never even was sure I wanted to be a mother, not until I became pregnant with Seth.

We had this big plan, huge plan, we weren't go to start trying to have children until I was 30. . . for the record I'm 29 now so that plan didn't work. Seth was a huge surprise. . . him having Down Syndrome was an even bigger one.

So there I was, 24 and pregnant, unsure I was ever made to be a mother. So I did what I do best, research, study and learn all about being a mother. I read all the books, DS and typical, read up as much as possible about everything I could expect about being a mom . . . . . . and you know what it did for me???

Not a damn thing.

There is nothing in life that can prepare you for motherhood. . . . nothing like it in the whole world. Reading all that stuff made me feel confident, but once they placed Seth in my arms, wow I knew I was way in over my head. And some days, some very, very hard days and weeks, I still feel like I'm fighting to swim up to the surface.

I remember the first diaper of his I ever changed. In fact Drew and I did that together, the first diaper . . . and it was a shit diaper. It was one of those moments that I'll never forget, two scared people, scared shitless, with this little baby, trying to figure out how a diaper worked. . . . and we did it. 

And four years later, four very long years later, we are still figuring it all out. We are learning about Hirschsprung's currently and doing all sorts of biopsies for that, we are learning how to deal with a growing four year old who is still developmentally a 3 year old. We learned to deal with croup and sinus infections and stomach viruses and strep throat and pneumonia and ear tubes and tonsil and adenoid surgery . . . . we've gotten so far as parents.

I've come so far as a mother.

No wait, I didn't come so far as a mother, I've become a mother. I'm a mom. That's a huge part of who I am now. And I never, ever want to go back to the time before I was a mother. Who was that person? Who was that woman who was unsure, who didn't even know how to take care of herself? Where did she go? 

Seth has brought out the best in me. I've become the best person I could be with him as my son. I've learned so much. He has been the best son I could have ever asked God for. 

And if I had to go look back through all that hardship, through all that pain, through all that unknown, back to that scared, frightened Shanna who first held her baby, I would do it all again in a heartbeat. 

Seth became a real boy . . . and I became a mother. 

Monday, May 7, 2012

Grief

I've been thinking a lot about grief lately and I realized something, it's the great equalizer because no matter who you are, where you are, we have all felt it, we all know of it, we all have suffered some sort of grief in our lives. It's something we can all relate to.

It connects everyone.

We have all felt loss, all felt pain, all have a burning hole in our heart that is aching to be reconnected to that someone who died, or to the idea of life that we never lived, or longing for that one who got away, that friend that we don't talk to anymore.

We all feel it.

Grief is a hard one for me to deal with. I feel grief over the life I thought Seth was supposed to have, that we all were supposed to have together, as a family, and now those dreams have been pushed aside for reality. But the truth is, reality is not so bad, in fact reality is good. I love my son, and while sometimes I have those feelings of grief well up, they remind me of all Seth has been through to get where he is, of all that he has accomplished.

I also have grief over my brother's death. My brother committing suicide in fact. I grieve the man that he would have become, I grieve every birthday past my 27th one that I am now older than my big brother. I grieve for the uncle that my son will never know, for the son that my parents lost, for the brother that will no longer be there for love and support.

And grief is a funny thing, it binds us all together. I was on the bus the other day and the bus driver just loves Seth. And she said that I was lucky to have him. And I am. But at that moment I didn't feel very lucky. I was sick, Seth and I were coming home from yet another doctors appointment, we were tired and hungry and not in a great mood at all, and this woman was telling me I was lucky.

And I ask her if she had any children. "Yes" she said, "a son. He's gone now". Her son passed away in a car accident when he was 20 years old. 20. 20 years old. So much life ahead of him gone. And I told her that my brother was gone as well, gone at 27, and we connected. Because we all know grief. It's a pain that never, ever goes away. Time doesn't heal all wounds. It still feels like a stabbing pain in my heart when I think of my brother, when I see the image of his face in my head.

So yes I am damn lucky to have my child. And I assured that woman that she would see her son one day, that he was just waiting up there for her, because that is what I truly believe. Don't ask me if I believe in Heaven or Hell, I couldn't truly tell you one way or the other, but I believe that those who love us are somewhere, and that they see us going through our lives.

I can't ever imagine what it must feel like to lose a child. I can't imagine how my mom feels and I can't imagine how that woman on the bus feels. But I do know that grief makes us human, feeling is one of those things that reassures me that I'm still alive, that I still have passion, that I still have a heart, that God is still with me. Because if I didn't feel I would be. I would cease to exist. Drew calls me a bleeding heart, I say let it bleed. I'm a sensitive, emotional person and I'd rather be this way than not feel at all.

So Seth and I got off that bus and Seth gave the bus driver kisses and waves and a hug. And I remembered something else, something so important to grief . . . . hope and life and love.

It reminds me that we grieve because we love so deeply. And I would feel grief a million times over again before ever giving up the feeling of love, because even though it hurts, even though your heart feels like it's never going to heal and there's a giant hole in it, love is always worth it.

Tuesday, May 1, 2012

on becoming a real boy

Dear Seth,

When did you become a real boy? I think of the story of Pinocchio and am inspired to write a story about my own wooden puppet, the one that  became a real boy one day.

So when was it over the last two years that you became alive?

One day I was changing diapers, bathing you, feeding you, dressing you, being the puppeteer, and the next you decided you wanted to do it all on your own. . . . and you do. You feed yourself, you are fully potty trained during the day, you bathe yourself, you even try and sometimes succeed in dressing yourself. You do it all Seth. There are no more strings attached. And I'm kind of missing holding them but I'm so proud of you for letting go, for becoming, for coming into your own independence.

Two days ago we took a long walk, shopping along the avenue, and you walked by my side and by your aunts and grandma the whole way. You listened, you discovered, you learned, you asked questions and got answers. You even insisted on stopping and looking at items that interested you. You exuded life, personality, wonderment. There was nothing passive about your existence, about your thoughts, feelings, wants and needs.

You had passion.

You made yourself known.

So I don't know exactly when this  big change happened, when you became "a real boy" but it has brought us nothing but utter happiness and joy. We are in love with everything you are, all that you want to be and all that you will become.

You are inspired and you instill inspiration in all of those around you.

In so many ways I was terrified that you would stay that wooden puppet forever, to be manipulated by others but never having free will or personality or emotion.

I never wanted you to lead a life of passivity Seth, and from Day One I have taught you to fight and be stubborn.

I now have proof that you took those lessons to heart. You are most certainly a real boy, and I'm so glad your're mine.

Friday, April 13, 2012

Imaginings of a Normal Day

I wonder . . . what would a normal day be like? A day where Down Syndrome didn't factor into our lives, a day where it wouldn't affect our lives at all. Because as much as I say our life is normal, I also say it's our normal, the normal we are used to because this is our life and this is what we do everyday, it's not really normal. There are so many things we do without thinking that have to do with Down Syndrome. There are so many parts of my day that are intruded into by Down Syndrome. So what would a "normal" day be like? I imagine it would go something like this:

Seth wakes up at 7am without complaint. (never happens)

He dresses himself because he's four and should be able to. (getting Seth dressed is a battle of the ages every morning!)

He sits and drinks his milk and requests what he wants for breakfast. (I'm lucky if I can get him to drink his cup of milk before he throws it on the floor- breakfast doesn't always happen)

He goes outside and waits patiently for his bus to take him to school. (He isn't patient, hates waiting for the bus and if he didn't have DS he wouldn't be going to school at all.)

Seth comes home from school happy and eats a snack and has a drink. (Seth is tired and cranky and clingy when he gets off the bus. He also doesn't want to eat or drink anything for at least two hours after getting home which is a long time since lunch.)

Seth and I go for a walk and he's able to walk ten blocks without stopping or getting tired. (I'm lucky if we make it down the block)

We go to the park and all these stores without complaining from Seth. He's able to express what he wants in the store and he can even hold my hand in the store instead of being confined to the stroller because he knocks everything off the shelves. We go into the library and he picks out a book and we read it together. He can even read a few words out loud. (The reading part is the part I most wish would happen. I so want Seth to have my love of reading, my love of books, my love of learning.)

Seth and I go home, he helps me cook dinner and we all have a nice, peaceful dinner. (Ok so Seth has a fit when I go to cook dinner, he destroys his bedroom and the living room in the time it takes to prepare everything, dinner is 50/50, sometimes he eats, others he refuses to.) Ideally Seth would eat anything given to him but that never, ever happens.

We would read a few bedtimes stories together and Seth would go to bed. No meds, no worries if he ate enough at dinner, no fuss. Seth is really good at bedtime and sleeping so that's no problem. But if he doesn't eat a good dinner he often complains of hunger right at bedtime, thus delaying bedtime at least a half an hour to an hour so he can eat something.

I don't know why I tortured myself writing this. I just wanted an idea of what I thought life without Down Syndrome would be like. Seth probably wouldn't even be in school at this age if it weren't for DS. Or he might be in a daycare program, with me working. There is so much that would be different.

Normal. . . . normal. . . I so want this kind of day. I think when he's older perhaps we will get one. We are making progress with it!!

Thursday, March 29, 2012

The word "retarded"

*Disclaimer*

This post is going to contain extremely graphic language that will be upsetting to a lot of people. If strong language and slurs are hurtful to you then I suggest that you don't read it. All of the hurtful words I'm about to use are not because I believe them, but because I'm making a point.

I trip over the sidewalk because I'm a klutz, always have been, and hear "you're so retarded" and I laugh. I laugh because I'm 16 and I'm stupid and insensitive and I haven't lived yet. And I look back and I'm ashamed.

It's 13 years since that day and now everyone uses the word "retarded", absolutely everyone. And it means so many things. It means that you are stupid or slow or ridiculous or silly or dumb or immature.
You know what it means to me? It means that you are comparing your stupid behavior to my child who has what used to be legally called mental retardation. Some places now call it intellectual disabilities or cognitive delays. But let's be straight, let's be real, by all correct meanings of the word "retarded", my child is, in fact, mentally retarded.

And I know that you probably "didn't mean it" or "didn't mean it like that" or that you think "your're too sensitive" and that it "just means your're stupid", but it doesn't mean that to me. It means that you think my child and their label and their behavior is unfavorable and therefore you are going to compare other unfavorable behavior in society by using the word "retarded". You are going to use a diagnostic word and make it into an insult, a slur to fling at the rest of society.

And there are so many people that are quick to say that "retarded" isn't a hate term. So I can go down the street and call the black person a nigger? Or the Jewish man a Kike? How about the Chinese person a Chink? Or that Irish man a Mic? Can I call the Italian guy/girl a guido/guidette or ginnie? Can I call that Arabic person a sand nigger or a terrorist?? Can I call a gay man a faggot?

CAN I???
SHOULD I BE ABLE TO?
How about you look into the eyes of someone with cognitive delays and call them retarded?
How is that not hate speech?

Can you control being black? Jewish? Chinese? Irish? Italian? Arabic? Hispanic? Gay? Can you control the color of your skin?? Because I know I can't.

People with disabilities can't control being disabled either. My son can't control that he has Down Syndrome. He was born with it, just like he was born Irish and Italian.

Because if you are allowed to use the word "retarded" then we should just fling all of this other language back into our vocabulary. We should say fuck it all to hate speech. Let's just not care who we hurt.

I never ever had to worry about what people looked like. I was born and raised and still am in Brooklyn, NY. We have everyone here. We live in a place where there is so much culture and so many different types of people. Labels didn't matter. I have friends from all walks of life, all colors, all shapes and sizes. I have friends who are typical, I have friends with disabilities.

And I can't imagine hurting one of my friends by using any of the hate words I mentioned above. . . . and there are so many more out there. Why would you not give me the same courtesy and not use the word "retarded"?

"Retarded" is a hate word. It hurts people, it's the type of word that can ruin your day, your week, your year. Let's say no to hate and stop using this word. Let's say yes to acceptance.

Wednesday, March 21, 2012

More Alike Than Different

I picked up this idea from another blog . . . what do I want Seth to take from me and my SO, what qualities/loves/skills do we want him to have?

I want him to have our love of science fiction/fantasy . . . particularly Star Wars!!!!!!! We are getting him started by introducing the original trilogy and watching it a lot - Seth approves!!

I want him to have my love of reading. Not even my love, my absolute undying passion for books and reading and knowledge and learning. I want him always to be eager to learn.

I want him to have SO's love for technology. Technology is such a big part of our world now and I want him to be part of that. I think he already is with his Ipad!!

I want Seth to have our sense of humor, our lightheartedness and the ability to laugh things off. He already seems to have that!!

His blue eyes. I know he already has them but when I was pregnant and heard he had DS, I thought "I know he had DS but please God let him have blue eyes". SO is Italian, I'm Irish and I wanted him to have the Irish blue eyes, it was just my thing.

"Please God let him look like us" . . . . ummm that one didn't work out as well. Seth looks EXACTLY like me - and me alone. I'll take it!!! Down Syndrome does NOT mean that a child will not look like their parents.

Seth has my father's face shape, my brother's eyes, my coloring and everything else from me since I look quite like my dad!!

Some things that Seth didn't get from us:

His love of playing instruments. Now we love music in this house, particularly rock/metal, and Seth loves it as well, but SO and I don't play instruments. But we love it that Seth does/wants to!!!

Seth's dancing skills. . . . we don't dance. . . does head-banging count??? I didn't think so!

Seth's social nature. SO and I are not very sociable people. We have our friends and we keep to them. We don't hate people. . . wait SO would said he does, so let me rephrase - we don't hate all people, we are just introverts. But Seth - Seth loves EVERYONE!! He thinks everyone is cool. I actually have been more social due to Seth and his ability to charm his way into anyones heart.

So what is this post about??? Seth is more alike anyone than different. He takes so much from us, but he also is his own person. Down Syndrome does not determine who Seth is. He is who he is regardless of Down Syndrome. Mostly he is a very well loved and respected part of our family. He has his own thoughts and ideas and wants and needs.

Seth is more like you and methan most people would ever know.

Tuesday, March 20, 2012

World Down Syndrome Awareness Day

Nothing in life is easy or simple with me. Because tomorrow is not only World Down Syndrome Awareness day, in honor of 3/21, 3 copies of the 21st chromosome, tomorrow is also my brothers birthday.

And most people would say - wow that's great - what a special day for uncle and nephew to share.

The thing is, my son has never met my brother, he committed suicide when I was six months pregnant, about a month after I received the DS diagnosis.

And so for the last four years I have neglected to celebrate March 21st. For the last four years I've been sad about the fact that Seth never met my brother Chris, I've been angry for the last four years that my brother shared such an important day in the life of my son because I think my son deserves at least this much - a day of his own.

The same goes for my family. I can't call my mom and ask her to wear her blue and yellow or my sisters or my remaining brother - I can't tell them to be celebratory and choose to pick happiness that day over sadness about our brothers departure from this Earth. It wouldn't be fair to ask them to make that choice.

This year I don't want to think about my brother. I don't. Therapy has helped tremendously in venting all of my feelings and thoughts surrounding his death and I think I'm done, I think I'm not going to let him rent negative space in my head. I'll just remember that he was my brother, once upon a time, long ago, and that that part of my life is over and a new part has begun.

I'll never forget him, he's my brother, but we had a very complicated non-relationship. We weren't close and although I do miss him, I feel more grief that the rest of my family is suffering, rather than having that sadness coming from my loss. I think about my son and nephew loosing an uncle and that saddens me tremendously as well.

But this post is about tomorrow - not tomorrow my dead brothers birthday - tomorrow World Down Syndrome Awareness Day - a day to celebrate my son and his proverbial brothers and sisters all over the world. A day to celebrate all those kids with those lines across their palms, beautiful almond eyes and the best smiles ever.

And I'm sure tomorrow I will remember you brother and think of you, I can't not because you are still in my heart, but I'm not going to wallow in grief or sadness or anger. I can't do it anymore. I'm going to celebrate my son, my Seth, my life now. And I'm going to be happy.

A poem in honor of my son

I didn't know.

didn't know about your almond shaped eyes,

button nose,

the space between your toes.


I didn't know.

didn't know that you were more the same

than we thought you different.

about your personality outshining the 47 pieces.


I didn't know.

didn't know that I had hurt others with my ignorance,

that I didn't think before I spoke

didn't know their pain til I felt it myself.


I didn't know.

didn't know that I'd love that line across your palm,

the space I kiss between your eyes,

the rosy red of your cheeks.


I didn't know.

didn't know that I would fight for you,

wipe tears out of my own eyes,

to prevent future ones in yours.


Now I know.

Monday, March 19, 2012

Believe

I was talking to a good friend of mine today about God and Jesus and belief and this thought about belief flooded me, I couldn't get it out of my head.

Belief doesn't have to refer to God or religion or anything supernatural. . . it could be as easy as believing in oneself. For me it's about believing in others, but mostly belief in Seth.

It's not easy having faith in him all the time, it's not easy being a believer. It's not easy having that much hope because hopes and dreams do get smashed everyday. But everyday I hope I show Seth that I believe in him and that I know he can do anything he wants to do. That's hard when there are so many negatives out there about Down Syndrome, hard when Seth gets sick a lot and gets a bad report from school. It's hard when you are faced with the fact that you have a four year old that behaves as a two and a half year old.

It's one thing to believe in your child, someone whom you love unconditionally, it's another to have that same belief in yourself, especially when you are as critical about yourself as I am. I'm always questioning my parenting, the way I treat Seth's illnesses, his medicines, his schooling - I question everything when it comes to how I raise Seth.

And sometimes it takes a great friend to let you know that you are doing it right, that you aren't fucking up, the friend that shows that he/she believes in you, has faith in you and that's a wonderful thing. Thank you Kelly. Honestly I don't even get that kind of positive feedback from my family and certainly not from my boyfriends family. You need to hear that you are a good mom, a good person and that you can believe in yourself.

It also made me think about my relationship with God. Yep I'm going there. Because as I've said before, I am not an uber religious person but I do believe in Him. I do. But what I've lost lately is the feeling that He believes in me. I don't feel that love from him, that approval, that voice in my head that makes me think God is watching over me and thinks I'm okay. I'm not feeling that lately. It's making me question myself even more. I don't know how to repair that relationship with Him, how to feel that love, but I don't think that is something I can do, it just has to happen, has to be a moment. The only time I see God in my life right now is when I look into Seth's eyes. I see God in his eyes, in his soul, in the sound of his laugh - that's the sound of pure love and happiness. . . kind of how I imagine God's love would feel like.

So faith and belief. . . I've lost those a bit lately. I look at Seth and see a kid with Down Syndrome - and that's not me, that's not my relationship with my child. . . I have to go back and start seeing Seth again.

I also have to realize that I'm worlds away from the person who started this journey almost five years ago, that I've changed for the better, that Seth has given me more belief and faith in myself than any other event or person in my life. He's given me that gift. It's up to me to nourish it and allow it to grow into something bigger.

As for the whole God thing - I'm still here God, I still believe . . . even if I'm lost hope some days or months or even years at a time. I'll always come back to you. I just hope you are still waiting there for me. I have my bagful of burdens, waiting for you to help me shoulder them. . . I'll be here when you're ready.

Tuesday, March 13, 2012

Only the Lonely

When starting this journey almost 4 1/2 years ago I never imagined how lonely it would be, how isolated I would feel from the rest of the world, how unimaginably fucked up it would feel to think that no one, not a one person in your life understands how you feel about raising a child with Down Syndrome.

You can give me all the support, all the sympathy, all the hugs and love and help that I need and it still wouldn't be enough to make me feel good about myself as a mother. It wouldn't make me feel fit to do this job, to be this much to one person in the world. I know I'm his mom, but I'm everything, caretaker, doctor, nurse, teacher, therapist . . . too much for this one person to handle.

And yes there is the great Down Syndrome community and they are wonderful moms and dads and they have made this journey so much easier for me, so much better but at the end of the day I'm alone in my own mind and I'm the one who has to deal with the shit.

Set has been acting strangely the last few days, we went to the ER last night, waited forever, as usual, and I thought Seth had a simple UTI, something easy, something that you give some antibiotics and that's it. Nope, not my kid, not my Seth.

We got handed constipation again. This is something we regular deal with with Seth. He's always full of shit, quite literally. So another night of enemas and Miralax and crying and whiny Seth and I feel like I'm at the end of rope, like I don't know if there is much more that I can think of to do for him.

At the end of the day and the beginning and the middle I'm there for him, I'm doing everything for him and it's extremely frustrating.

And I know that this blog is a lot of whining and bitching and moaning on my part, and I know that it looks horrible. . . but this is the only place I get to do that. I can't bitch to anyone is this life, I'm alone in this journey and everyone sees the good about Seth. I do too, but I see the issues as well.

And I'm very tired because on top of my regular duties of being a mom and cooking and cleaning and laundry and paying bills and therapy and figuring out which kindergarten Seth is going to . . . . I have a clingy, sick child who doesn't understand why he always seems not to feel well.

So this is my life, sitting on the couch with my son, watching Yo Gabba Gabba and praying that I soon get a moment to cook dinner, take a shower, and get some time to myself. Yeah he's sitting on my lap as I type this.

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.

Love,
Mommy

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

Home

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?

Home.

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.