Tuesday, May 29, 2012

Coping with Schroedinger's Fetus

Last night was blissfully free of dreams. Unlike the past few nights, where I was assaulted by inescapable and terrible stories of children cruelly ostracized and family members who so obviously didn't love them as much as "normal" children.

The dreams are my own fault, in a way. I've been drowning myself in memoirs written by parents of children with Down Syndrome and their fears and nightmares appear to have turned into my own. But for whatever reason, it has been important to me to peek into the human side of Trisomy 21.

Eventually, I found a memoir that didn't put an immediate halo around that extra chromosome. So many do, to the point where I could easily imagine more than one reader thinking "I wish Down Syndrome were something I could experience!"

And maybe I'm just not being charitable. Maybe those writers' experiences were just as sweet as laid out in text. Outlook is everything, after all.

Which is why I went digging for something written by parents who seemed to have an outlook a little more like my own. Who weren't afraid to write in great detail about the negative emotions they felt and how hard that new life was and even how their thoughts were colored by anger for so very long. Parents who thought about termination and adoption and just simply running like heck without ever looking back.

Look, I know that I'm essentially acting the voyeur - gazing into the homes where Trisomy 21 has knocked, entered, and settled in for the long haul - and that what I'm doing is probably a little unhealthy considering there are four more days to go until my amnio and nothing is written in stone. But as I carry Schroedinger's Fetus around in my belly, it's a way to pass the time productively. Consider it information gathering, and I mean the kind of information parents knocking up against a possible Down Syndrome diagnosis should actually have.

Not nonsense about sandal gap or low set ears, but real facts about how families regroup and rethink and find their way on a path that seems to be somewhat different than "average" but not nearly as different as they might have expected.

13 comments:

  1. So perhaps I'm a tad confused, but I thought that your previous test indicated there was only a possibility for Down's? That the amnio would determine once and for all, but there is still a possible "no issues" result. Or am I way off?

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    1. Nope, you're right - it's still only in the realm of possibility. But we're still trying to think ahead as to how we'd handle a diagnosis in case that's the news we get and I want to know as much as I can!

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  2. I think I would be just like you in this situation. I know that so many families feel blessed with member who has Down's Syndrome, but it hardly seems likely that it felt like much of a blessing at first. Surely there's an adjustment period. There has to be anger, frustration, sadness and maybe even a little regret that your family didn't turn out the way you expected. I'd want to know about THAT. Then when I went through it I'd know it was normal.

    Hopefully you won't have to deal with any of that though.

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  3. When I had my first round of genetics testing for my daughter (thanks to being old!), it came back as a 1 in 200 chance of Down's Syndrome.

    Now for some, that might not be a very big deal, but to me, it was a VERY big deal.

    I absolutely remember thinking that I would not be able to handle a child with a disability. That I was just too old and would not have the physical stamina to deal with a Down's child. That it would be so unfair to my son to have to devote so much time, energy, and resources to my daughter. I wept, I pounded walls, I drank too much tea, seeing as I had no other alternatives, really.

    I wallowed in a depression for probably three weeks or so, and I mean a total depression.

    But then I gained some perspective on the situation, and I can't actually remember how it happened. I think allowing myself to really bottom out helped a lot.

    I actually declined the amnio because I was already a high risk pregnancy, and I decided that no matter what, I was ready to raise this child. It turned out that she did not have Down's, but it didn't matter at that point.

    Of course everyone is different, but you are absolutely not alone in having doubts and fears.

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    1. Wow, thank you so much for sharing your experience - it's nice (wish I could think of a better word) to know that I'm not alone in the things I'm thinking and feeling.

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  4. Honestly, I think you're right... it's probably unhealthy to be doing what you're doing :) I love you, but for me... I'd just cool it until I got some results. I know, easier said than done!

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    1. Keeping cool has never been my thing :) But I'm trying!

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  5. I agree with Courtney! But if you *must* keep reading, please read some of Emily Perl Kingsley's writings, as well as "Count Us In" by her son Jason Kingley. Also check out Alison Piepmeier's blog. xoxo

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    1. Count Us In has been on my list! And don't worry - everything I've been reading has been heartbreaking and real, but also not terrible. Family memoirs type stuff.

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  6. I am not sure I would be any different to you. One has to consider all possibilities but I am still staying positive that your baby will be a healthy bundle of joy.

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    1. Thank you! I really appreciate your positive thoughts!

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  7. I admire you so much for facing this with such honesty and openness. You are going to be way ahead no matter the outcome because you didn't go bury your head in the sand. I am still thinking positive thoughts for you as I am a big believer in the laws of attraction

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