Sarah Defies Gravity

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

Archive for the month “September, 2011”

Protected: because she’s a child of yours, too.

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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.)

 

 


“You have a job. Sarah is your job.”

So, Sarah and I are preparing to make our second move in four months. We had moved in July from our apartment to Dec’s house, but Dec is preparing to move to New York for his two year work contract, and we decided it would be easier for Sarah and I to move out of the house for our six month try at staying here (at the end of six months we will move to be with him) and…into his parents’ house.

Yup.

I considered moving back in with my parents (2 hours away) or using my savings to pay the mortgage on the house, but we finally came to the conclusion that this was the best temporary solution. But this isn’t the point. The point is this:

I haven’t worked since right after Sarah was born. I had only really figured out what I wanted to do career-wise a few months before she was born and I was running around like a chicken with my head cut off trying to figure out which schools were the best, what the job market was like, and everything else I was going to need before I jumped into the world of editing. Yes, I wanted to be a grammar nerd for a living. A big part of me still does, but I digress. It could be a long time before I’m even THINKING about that again.

So naturally I felt a little bit uncomfortable moving in with my boyfriend of just under a year’s parents with no job and a special needs baby and naturally I offered to do whatever I could to make sure that they knew how much I appreciated their willingness to support us. And one of the things I asked was if they wanted me to get a job.

Their response surprised me.

“Are you kidding?”

Um. No?

“You don’t need a job. You HAVE a job. Sarah is your job. You have decided to dedicate this part of your life to making sure that she gets the best start possible, and that’s the most noble job of all.”

And you know, I guess it is. At this stage I can’t imagine working. There’s so much I need to do with her, so much, well, work that needs to be done with her to make sure that she grows up into a successful human being who reaches and exceeds her full potential that the idea of having a job alongside being her parent exhausts me. I commend the parents of kids with special needs who can do it. I know I sure couldn’t.

And so for now? I’m going to enjoy my job as professional Sarah handler. The professional world can wait.

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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