Sarah Defies Gravity

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

Archive for the month “September, 2012”

One and One-Half Wandering Onlies

*with apologies to Paul Simon for jacking his song lyrics like that

It hit me today (okay, yesterday…) that I am, in fact, an only child.

Sort of.

I think it was because Sarah lost her lovey, which happened to have my sister’s voice in it. My sister died eight months ago next week. I still don’t want to write about the details, I still don’t want to talk about her. I know that when I do I will feel so much better, like all of the pain and hurt and feelings of fear and unhinged-ness will pour out and then evaporate (‘that’s poetic…that’s pathetic’) and I’ll feel a lot better. But I’m not ready to talk about it, and so I won’t. Because grief is a funny thing and it’s also a fickle mistress and I choose to give into it…or something.

But losing my sister made me, in a sense, an only child, and there’s the ever present reality that Sarah, too, will be an only child. That’s not a reality I like, that’s not the reality I would have chosen for her, but it’s the reality that exists and it’s the only one I have to work with, so, just like all of the other lemons life hands us, I have to accept her onliness.

Not that being an only child is so bad. I was a lot more settled in this decision when she was a newborn and we (the unit of Dec and I, back when it was a unit) made it together, but after we changed our minds, it was a reality that was a lot harder to swallow.

It’s a practical reality, and it’s a reality that will make things a lot easier and a lot better for both Sarah and myself because of the logical factors, but when it’s not the thing you want it’s hard not to want to throw something against the wall and yell SHIT! about it.

I wanted Sarah to have a sibling with Down Syndrome because even if they didn’t always get along, or their personalities clashed, there would always be someone there who understood her, someone who GOT all the things about having an extra chromosome that us lowly 46ers just can’t. And I wanted to have another child with Down Syndrome because Down Syndrome knocked me off my feet with how awesome it is, and because it’s all I’ve ever known. Down Syndrome parenting was something i wanted, and multiple children with Down Syndrome was also something I wanted.

Regardless of her sibling status, Sarah will have a good life. She has parents who adore her, she has family who adore her, she has people who have never even laid eyes on her who adore her. She has a spitfire personality, sparkling mischief in her eyes, and the will to fight. She has accomplished so many things in sixteen-going-on-seventeen months and she will continue to accomplish so many things for sixteen-going-on-seventeen months after that and after that and after that. She is beating cancer, she is crawling, she is saying Dada and Papa and NO, she is doing things and learning things and being things beyond my wildest imagination. She does not need a sibling to be whole.

Does it make me sad that she’ll never have a sibling? Yes, and it makes me sad that I’ll never have another baby. But in the end, I know that she’ll have a good life, and she might miss out on the sibling experience but she’ll gain so many other experiences. And I also know that this crazy journey started out with just Sarah and I and this crazy journey will end with just Sarah and I, and I’m okay with that. I’m okay with that because that’s the way it’s supposed to be, and because I can’t change the hand that fate has dealt us, I can only take it and own it, hand over my chips and accept twice as many in return. I can deal with that.

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This Road I’m On

Let’s face it…2012 sucked.

I thought 2011 sucked, and in some ways, 2011 did suck pretty hard. But for the most part, 2011 was full of joy, full of wonder, full of hope.

2012 was consistently, entirely, completely full of suck and fail, and by the time we were 8 months in, I was beaten, battered, and completely destroyed.

But you know? 2013 is going to be much, much better. Thanks to some wonderful people who picked me up when I was fallen down and glued me back together when I was completely broken, 2013 is going to be like a better version of 2011, full of hope and promise and joy and life.

I’m going to be honest, because I pride myself in being honest on this blog–in part because part of the mission of having this blog is to present an honest, informative, realistic portrait of Down Syndrome parenting to the world at large (as opposed to a fluffy, sunshine and rainbows portrait of Down Syndrome), and in part because it actually makes me feel a hell of a lot better–for the first time since Sarah was a newborn, last month made me really hate the fact that she has Down Syndrome. Because I did a bad thing. I began to blame Down Syndrome for all of the things that happened. If Sarah didn’t have Down Syndrome then she wouldn’t have gotten cancer (not true). If Sarah didn’t have Down Syndrome and cancer then maybe Dec wouldn’t have gotten so stressed out and he wouldn’t have left us (okay, maybe true…but aren’t I better off without him if that’s the case? YES). If Sarah didn’t have Down Syndrome I could have a second child and go to college and all of the millions of other things I desperately wanted to do that I couldn’t–or thought I couldn’t–because Sarah had Down Syndrome. I was beginning to become bitter and resentful about Down Syndrome and how it was affecting my life.

There’s still a part of me that resents Down Syndrome for what it did to my life, but things are working out. I’m not trapped in a city I hate, alone and scared…I’m moving back home at the end of the month. I’m not going to be stuck in a dead end job with the end goal of strictly supporting Sarah. I’m going to university in January of 2013 to study science and, eventually, genetics.

And Sarah? Sarah is doing wonderfully. Sarah just started crawling…and saying “papa”. The word is teeming with possibilities for both Sarah and I, and I can’t wait to see where the road we’re on leads us.

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