thinking out loud: disappointed...

...in the media.  google alerts lighting up like a Christmas tree.  glad for new low-risk prenatal test, sad for how it's being presented.  diminishing the value of "different" lives, singling out those with the extra 21st as the ones to kill.  should be marketed more as allowing women to have advanced notice, be able to prepare, make decisions, gather information, rather than solely how not to kill healthy babies.  does this mean it's okay to kill the others? 

New Down Syndrome Test Could Cut Healthy Baby Deaths

a headline?  a death sentence, if you ask me.  couldn't read the article.  too mad, although Dr. Skotko was  quoted.  still couldn't get past the title...

not judging people's decisions...just judging the people who don't provide the correct information for people to make informed decisions.  the doctors...  the media...

got a new girlie doc last week.  she's awesome.  supportive.  feels the same as me.  this is important.  need to know I'm backed up, that people like my daughter are protected.

but the media slant is still out there, still making people feel justified in their "decisions," pushing them into a choice they are not fully capable of making.

so disappointed.

Randomness: Closet Cleanup

Steve worked soooooo hard on the upstairs hall closet the other day.  It's a linen closet, but the darn shelves are too narrow to actually fold linens!  We've had to move towels down to a cupboard in the basement, but are keeping the sheets upstairs.  Please don't ask me how he folded these sheets.  Frankly, I'm a little bit afraid of this closet.  I'm sure I'll feel mighty guilty as soon as I have to pull a set out and unfold it.  And I'll feel even guiltier every time I do laundry and have to ask him to work his magic and fold the damn sheets himself.  I am not a sheet folder.  Like some people don't do windows?  I don't do sheets.  I remember when I was a kid, my aunt tried to show me how to fold fitted sheets, making it look so easy.  I still try to recall her advice, but still can't replicate the magic.

Steve's on a rampage at the moment, clearing out and re-organizing all of the closets.  Trust me, they need it, too.  Mine has not yet been attacked, and I'm kind of scared to attempt it.  I have so many clothes I can't fit anymore (subject of a whole 'nother post about snacking, lack of exercise and old age in general) that I'm convinced that I'll be able to get back in to one day.  And when if that day comes, I suspect they'll all be too out-of-style to wear.

In the meantime, enjoy some (slightly blurry, cell-phone-produced) eye candy.  Anyone want to take bets on how long this feast for the eyes will last?

Rapunzel, Rapunzel, Let's Wash Your Hair

I wonder how Rapunzel washed her hair.  If it were me toting along a quarter mile of those luxurious tresses, I'd tilt my head out the window during a rainstorm.  Washing Samantha's hair has always been a dreaded event for me.  Sometimes I wonder if I'm a bad mommy for only washing her hair once a week, but seriously, it's just too much of a pain to do any more frequently.  I am pretty sure my mother and my husband are reading this and thinking, "See...if she'd only listen to me and get that poor child's hair cut she wouldn't have this problem!"  But it really doesn't have so much to do with the length of her hair as it does with the fact that until recently Samantha would never put her head back to allow me to rinse the soap out of her hair without getting sudsy water in her eyes, and she hates getting water in her face.  What to do, what to do?  I mean, she's been perfectly capable of putting her head back so my water-soaked washcloth could be squeezed over her hairline without issue - she'd proven it on many, many dry runs.  She'd even say (in missing-word, gramatically-incorrect Sammi-speak), "Look up, no water in your face!"  Okay, child, take your own advice, please!! 

I did say until recently, though.  She's gotten much better about it.  It's like one day it just clicked, and we've had blissfully tear-free bath times ever since.  See, the length of her hair doesn't have a thing to do with it!!    The length does have to do with the amount of time it takes to ensure it's dry enough for her to go to bed, though.  So hair-washing nights have to be carefully planned so she doesn't end up having to stay up too late.    It's also planned carefully from the time she wakes up on the morning of hair-washing day.  She's a creature of routine, quick to absorb the run-down of the day ahead, reciting it back to you throughout the day.  She likes to be prepared (activity transitions for people with Ds can often be challenging), so we do tell her from the get-go that I'll be washing her hair that evening.  Seriously, it actually makes her accept the inevitable, whether  it's something she's looking forward to (ie. a birthday party), or something she would ordinarily resist (ie. hair-washing).  For those of you with young children with Ds, please take routine to heart, and get your kids on a schedule or be sure to give them plenty of advance warning.  Then sit back and watch the meltdowns begin to disappear.  :-)

Fending Them Off With a Stick

A short and sweet post for today, since Samantha had to miss school because she was sick this morning and I took the day off to stay with her while Steve went to work with a client.  Nothing serious, and nothing lasting - I think something she ate yesterday may not have agreed with her inner parts, and she spent a good portion of the morning on the toilet.  Sorry for the TMI segment...  Once she was done, she was completely back to her normal, happy, chatty self, but didn't want to go back to school so we decided to keep her home just in case. 

So, the other day Samantha's teacher at her "typical" school informed us that one of the little boys has a crush on Sammi!  Apparently he's always talking about her and how pretty she is.  When I was there a few weeks ago to pick her up one afternoon, he and another boy practically ran some other kids down and tripped over themselves to catch her before she left the classroom so they could give her a hug. 

Warm fuzzies all over here.

Oh, she's starting to wake from her nap...must go attempt to get some stuff done quickly before she's fully up...

Remedial Prehistoric Portrait Drawing 101

Don't get me wrong, I'm not cruelly judging Samantha's artwork with my title.  I'm just being silly. 

I'm actually one super-proud mama right now. 

I know I tend to go on and on about stuff Samantha is doing or ways she makes me proud and little else, but seriously, our lives are pretty dull otherwise.  I could absolutely tell you about what I had for dinner (chicken quesadillas), or how many loads of laundry I did yesterday (zero), but I can already hear you snoring from here.  Really, there's not much else going on. 

Samantha, testing out her fresh, shiny, pointy-tipped new crayons (Oh!  Do you remember how wonderful it was to have the 64-count box with the built-in sharpener instead of suffering blunt, lackluster little stubs?  I'd have sooner given up drawing altogether...) that she got for Christmas, took it upon herself to draw a family portrait.  Our very first family portrait.  So precise, so perfect.  First of all, Daddy's the little one.  hehehe.  Not sure how that happened, but okay.  Second, if you look closely, you can see each figure has eyes, a nose, a smiley mouth (finally encompased within the confines of the gargantuan heads, rather than extending outward like a demented whisker in her earlier face-drawing stages), round ears at the sides of the head, hair, legs (coming out from the bottom of the head, of course, as extensions of the neck), a round tummy in the middle, and on mine and Samantha's at least, arms (those tentacle-like extensions wafting off to the right - looks like I'm doing the hula...).  

I will treasure this. 

Samantha and the Amazing Technicolor Crayola Dreambox

Who Loves to Tickle The Ivories More...?

Some time ago, I submitted a photo and some text for NDSC's "More Alike Than Different" poster campaign.  I sent a photo of Samantha playing piano, asking, "Who loves to tickle the ivories more, you or me?"  (The image below was an earlier incarnation where I inadvertently put the emphasis on the word "You" rather than "Me."  It was subsequently changed, cheerfully and graciously, by NDSC at my request, but for some reason Blogger won't let me upload that revised image.)

The posters were displayed beautifully on the NDSC website for a time, and it was a lot of fun clicking through and seeing the familiar faces of some, and the beauty and inspiration of all.

Sadly, hackers got onto the site and defaced the images and text, so the page was pulled down.  I won't go off on a tangent here about how sick some people are, as that's not the point of this post.  I never saw what they did, and am glad I didn't.  Ignorance really can be bliss in some circumstances.

Instead, NDSC contacted the people who had submitted their posters, asking for permission to use their images in a new awareness video they were creating.  The beautiful and breathtaking result is below.  Pay particular attention to ...dream of being onstage...  :-)  By the way, to fully view it (blog formatting issues here) and to see Sammi's pic, please click on the body of the video while it's playing to take you to the YouTube version directly.