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.