Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Archive for the tag “down syndrome”

Spreading the Word to end “The Word”

Words hurt.

You know that adage “sticks and stones may break my bones, but words will never hurt me”?

It’s bullshit.

Words are some of the most powerful weapons there are. Words have started wars, incited violence, and caused people–innocent people–to harm or even kill themselves. Words hurt, period.

And that includes the R-word.

It’s not cute. It’s not funny. It’s not “cool”.

It hurts. It hurts Sarah and every other child like her, who marches to the beat of their own chromosomally enhanced drum. It hurts me on behalf of my sister, who once told me that she didn’t like hearing that word because it felt like the other kids were saying that it was bad to be like her. It hurts people with autism, with cerebral palsy, with TBI, with dyslexia…it hurts anybody who is a little bit different, who has to work a little bit harder, but who is worth¬†every¬†bit as much as anyone else.

You might think it’s okay. You might think it’s “just a word”, that you don’t “mean it that way”, that I’m “too sensitive”. But let me tell you something.

When you say that word, I picture my daughter. I don’t hear “You’re so retarded” or “that’s so retarded” or “you’re a tard”. I hear “That’s so Sarah.” “You’re so Sarah.” “You’re a Sarah.” I hear “That’s so Hannah.” “You’re so Hannah.” “You’re a Hannah.”

I picture you saying it right to their faces. I picture you looking at my sweet, bubbly baby, my sister, who loved every person and dog she ever met as if she’d known them her whole life, and I picture you saying those words to their faces. It’s not just a word. It’s an attack. An attack on the most vulnerable, most innocent members of our society, and it’s not fair. It’s not right.

You wouldn’t call a black person a “nigger”. You wouldn’t call me a “fag”, or a lesbian a “dyke”. You wouldn’t use those words to mean bad or wrong or stupid, either. So why would you call someone a retard?

Today, I’m asking you to make a lifestyle change. I’m asking you to go to http://www.r-word.org and take the pledge–for today and every day–to eliminate that word from your vocabulary, today and every day. It doesn’t take much, but you can change the world just by changing your words. Do it for Sarah. Do it for Hannah. Do it for the hundreds of thousands of people in this country like them. They deserve better.

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31 for 21 #3: Andy

Andy was born in China, four years to the day before Sarah! He and Sarah also share another common bond–they were both surrendered by their biological mothers because of their extra chromosomes.

However, Sarah, unlike Andy, is fortunate enough to live in American and that she has myself and her Dada to take care of her. Andy is not so lucky–he doesn’t have any parents to call his own!

Reece’s Rainbow is an organization that matches prospective adoptive parents with children in European and Asian countries who have special needs, mostly Down Syndrome. I am choosing to talk about Reece’s Rainbow today instead of about Sarah because I feel like this shouldn’t only be about Sarah. We need to look at the bigger picture.

There are thousands of children in Eastern Europe and Asia who are in orphanages because they have special needs. These orphanages are NOT the place for these children. They do not get to grow, develop, and learn to reach their full potential, and when they turn six years old, most of them are sent to an ADULT MENTAL INSTITUTION. The majority of these children will die within one year of being committed.

Here in America we are blessed with many opportunities for our kids to reach their full potential, and that’s why we make ideal families for these children, who so desperately need mommies and daddies to love them and help them to grow into fantastic people.

If you are reading this, and you feel called to adopt Andy or any of the other children on Reece’s Rainbow, please look into it, or considering donating money, or becoming a prayer warrior. Every bit helps!

So Glad You Are a Child Of Mine

Although you see the world different than me

Sometimes I can touch upon the wonders that you see

In all the new colors and pictures you’ve designed

Oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine

You don’t need direction, you know which way to go

And I don’t wanna hold you back, I just wanna watch you grow

You’re the one who taught me you don’t have to look behind

Oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine

Nobody’s gonna kill your dreams or tell you how to live your life

There’ll always be people who make it hard for awhile but you’ll change their heads when they see you smile

The times you were born in may not have been the best, but you can make the times to come better than the rest

I know you will be honest if you can’t always be kind

oh yes, sweet darling, so glad you are a child of mine

Child of mine, child of mine, oh yes sweet darling, so glad you are a child of mine.

– Carole King, “Child of Mine”

My mother used to sing that song to me when I was very little, and I always assumed I would sing it to my children, too, because it’s a sweet sentiment. I just never realized how much of it would apply after Sarah was born.

Sometimes it still blows me away, five months in, how much having a child with special needs changes your life, your perspective, everything. Not in bad ways. For the most part, anyway. Just changes things. Knocks you on your ass, so to speak. There’s so much that I took for granted and never even thought about before Sarah was born, and then she came along and changed everything, including the way I hear this song.

To me, it fits so perfectly to celebrate Sarah’s extra chromosome, especially “although you see the world different than me”, “there’ll always be people who make it hard for awhile”, and “I don’t wanna hold you back, I just want to watch you grow” and, to be honest, when I asked my mother to send me a copy of the song so I could learn the words, I had a moment, and for once it wasn’t a wallowing-in-self-pity, I-wish-my-child-didn’t-have-Down-Syndrome!!!!!!!! moment. It was a moment of, ironically, “I’m so glad my child has Down Syndrome”. A rush of love for her not only in spite of that little bit of wayward genetic material, but also because of it.

It might sound strange, but I’m glad Sarah has Down Syndrome. I’m glad that I was given the opportunity to be the parent of such a remarkable little human being. I’m sometimes frustrated that I can’t talk to parents of “normal” kids and compare my kid with theirs, but mostly, right now, I’m in a good place. I am so glad, as the song says, that she is a child of mine.

My boyfriend told me today that he would only consider having a second child if he could somehow guarantee that they would have Down Syndrome too. Considering that I was the one who wanted children and he didn’t, this is a big deal!

I need to do a post soon about his relationship with Sarah. That has been one of my favorite things about this process, and I think that another one of the millions of reasons why I’m glad Sarah and her extra chromosome are part of my world is because of her profound relationship with Dec, and because of how much she changed, for the better, my relationship with Dec.

(of course, it also serves to hurt like hell that he’s going away in only two short months. December seems so fucking close and May seems so far away. That, too, is another post for another time.)

 

 


Perfection and Perspective

If there’s one thing I wish I had been told when Sarah was diagnosed with Down Syndrome, it would be that ignorant people are everywhere and that their ignorance is the gift that just keeps on giving.

What I was told was that all parents of children with special needs go through grief, and then acceptance. This was true for me. But what I wasn’t told was that the grief doesn’t just pass…it comes in waves, cycles, blocks. And that it’s triggered by the words and actions of others.

There was a topic on my debate board today about the perfection of children with special needs, and whether parents of children with special needs were in denial that their child had a problem if they thought their child was perfect. And it hurt. More than it should have. More than the endless posts about abortion for Down Syndrome or eliminating Down Syndrome entirely (which is another post for another time). Because it brought along another phase of grief.

One of the things I worried most about when Sarah was diagnosed was how I would see her. Was I going to be able to love her as much? Would I get to experience that parental euphoria that I’d heard so much about, where you are completely head over heels in love and you think your baby hung the moon? The answer, it turned out, would be yes…with conditions.

I do think Sarah is perfect. That is, I do think Sarah is perfect to me. There is, in my eyes, nothing wrong with her. She is healthy. She is beautiful. She is intelligent. If I was given the opportunity I would not change a single thing about her, because Sarah does not suffer for being Sarah.

But there is a certain percentage of the population–a certain vocal percentage of the population–thinks that I have no right to feel that way. They feel that there is something wrong with her, and that I’m just in denial.

But I’m not. I just have a leg up on the rest of the population in that I no longer strive for “perfection”, because I am able to put Sarah’s Down Syndrome into perspective and know that it’s not the end of the world. That in her own way, she really IS perfect, and that she can still live a full and happy life–perhaps even a fuller, happier life–without her extra chromosome standing in the way.

Are there certain disabilities and medical conditions I wish I could cure? Absolutely. And again, that’s another post for another time. But having a disability is not necessarily a death sentence. It is not necessarily a blight. And I feel that above all, for those disabilities, we should be focusing on acceptance, not eradication. Because not only is human perfection unattainable, but because there’s nothing “wrong” with having Down Syndrome. There should be no shame in loving your child for exactly who they are if exactly who they are doesn’t hurt them in any other way.

From this day forward, I am going to make a promise to myself to never be ashamed of Sarah or my love for Sarah. I am never going to let people tell me that I should feel any way but unconditionally loving toward my child. I wouldn’t want to change her if she had blond hair instead of brown hair or green eyes instead of blue eyes, so why should I want to change her because she has 47 chromosomes instead of 46?

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