More About Normalcy: The Dance Card

I wasn’t planning on writing another blog post this week. Three times was enough, really, and (surprisingly) I don’t have much to say. Our days just aren’t that interesting. I go to work, I come home, I go to bed. Pretty simple stuff. Even our weekends aren’t generally that interesting, so I’m not sure how I manage to squeeze out any posts, really. It’s no secret that Samantha is my inspiration. While my own day-to-day existence is pretty hum-drum, I like to think that hers is far more exciting.
Not like we really get to hear about it, other than a snippet or two from one of her teachers and the usual answer to our rote question, “What did you do today, Samantha?” “Play!”

Great. Glad we cleared that up.

She’s got some trouble answering Who/What/Where/Why questions. It’s getting better, but her responses don’t always match.

Me: “What did you play with today?”

Samantha: “With Miss D. and Miss T.!”

Me again: “No, honey, what did you play with, not who.”

Samantha: “Blocks, and kitchen and books and puzzles!”

Got it.

Same answer every time, though. I know they often do a lot of the same things in the free time at school, but I’d love to hear her tell me what she learned one day, or to tell me about some new game or toy. Occasionally she’ll throw something else in there.

So on Thursday, when Steve went to pick her up from her typical Junior K class in the afternoon, he got another first-hand glimpse into the Princess’ social life. As soon as he entered the class, Sammi’s little girlfriend BFF, L. (seriously, Samantha sometimes throws her arms around me and says, “Best friends forever!!” and when I ask her who, she says, “L.!”), ran up to him and asked if Sammi could come dance with her first before she left. Still weak from having had the flu and feeling like he’d rather crawl back into bed than hang out in a room full of children listening to music, how could he possibly refuse that?

L. took Sammi’s hand and led her to where the children were dancing together.

While Steve waited, a little boy, N., approached him, (I swear, I'm getting an early view of what things will be like when she's a teenager!) and asked if Samantha could have a playdate with him.

Omg, how sweet is that?

Of course, Steve, being the dutiful father, told N. to ask his mother.

It appears that Little Miss Popular’s dance card is already pretty full.

All Things Are Possible

She was so beautiful.

Steve thought she was 9 or 10, I guessed mid-teens.

Funny how an extra chromosome can create such an ageless wonder, an ambiguity of time-passed, the illusion of longevity. 

Funny how that same extra chromosome can create so much aesthetic perfection, the exotic almond eyes of fairy tale royalty, a pureness of heart and soul, a generosity and empathy found in few others, yet can be so painfully flawed in its ravages on so many of the functional human systems that sustain health and life.

I had already scanned the room, as I always do when faced with a busy, new environment, looking for that 1 in 691.  But this time my cursory glance brought back nothing. 

"That girl at the table over there has Down syndrome," Steve said, matter of factly. 

How did I miss her?  She was barely 20 feet away, sitting with her family.  The restaurant was loud and dark, so my oversight should hardly have been surprising.

Pushing her long blond hair out of her face in the easy, un-selfconsious way of someone comfortable in their own skin, she laughed at something her father said, tilting her head back, her mouth forming the words, "Oh, Dad!"  She perused the menu, practiced using a pair of chopsticks joined at the center with a band designed to aid a beginner, engaged in small talk. 

I couldn't help staring, trying carefully to avoid any sideways looks from her parents.  It's hard to stalk when my own child isn't with me.

I wanted to talk to them, to tell the girl how I admired her.  I remembered my prenatal fantasy of having a daughter I could go places with, do things with, of whose company I never tired.  I remembered how I thought all of that was gone forever after receiving Samantha's diagnosis, and how I have come to realize that the "fantasy" girl still exists.  Samantha is proof.  More proof was sitting at that table right over there.

All things are possible.

Running out of Time - A Fundraiser & Giveaway to Save Lera!

You may recognize this sweet little face.  This is Lera.  I first saw Lera's picture a year ago, when the call for a forever family reached a desperation point.  I remember coming home, crying, wishing there was something I could do to save her.  Because she was born in Eastern Europe, graced with an extra chromosome and given up for adoption, she was facing a life of suffering in a mental institution once she turned 5.  For a number of reasons, out of anyone's control, the first two families that came forward for her were unable to adopt her.  Now the Higbie family has stepped forward and has been maintaining an uphill climb all the way, working tirelessly to bring her home. 

But Lera has just turned 5.

And, as promised, she has been transfered from the baby home where she spent her first 5 years, the only home she has ever known, to a mental institution.  I won't go into detail, but let's just say our beautiful, fragile children often die there within a few years of their transfer.

The Higbies desperately need help to bring her home.  They are so close, but still need more funding to facilitate the remaining travel and paperwork details that lie ahead.  Please visit their blog for a chance to win one of several amazing items being donated to Lera's cause, and help to give Lera the life she needs, and deserves, with a family that loves her.  That already loves her.

Sickie...?

Mommies are made for the messy stuff.

Saturday evening, shortly after bribing Samantha to eat her dinner (veggie burger & hummus) so she could have some ice cream for dessert, everything came back up.  It was completely unexpected.  And to add insult to injury, Steve and I had just ordered pizza for ourselves to eat after she went to bed (needless to say, we now have lots of leftovers).

Now this is a child who, other than having had her first two years punctuated by reflux after every meal (maybe one day I'll share a few embarrassing stories...), has only actually vomited two or three times in her nearly five years of life.   I consider us very lucky.  And because the illness came on so quickly, and passed so quickly (she was finally sleeping soundly by 11pm), we are pretty sure it was something she ate.  Which is weird, because I tasted everything myself, too.  Who knows?  I guess I have a constitution of iron.  But it wasn't pretty.  And my girl, ever the trooper, would wretch, then say after every instance, "All done."  No tears, it's just how she rolls. 

And in true Samantha form, she woke at her usual time of 6:30am on Sunday (oy, I really could have used another few hours sleep after spending a restless night in her bed), and began playing with her toys, asking for something to drink and acting like nothing had ever happened.  "How are you feeling this morning, Sammi?"  "Better, Mommy."  Whew!

And in true Samantha fashion, my little model, dark under-eye circles and all, was ready and willing to pose for some glamour shots after eating a breakfast of juice and toast with peanut butter.  Like nothing ever happened. 

Go figure.

Sleeping on the couch, covered in her school bed roll and lying on the old towel usually reserved for dyeing hair and taking cats to the vet.  One old hair-dye towel had to be thrown away that night, with much sadness on my part - I had used it since college and it had lovely streaks of random colors all over it.  Easier to throw it out than to figure out how to clean that mess out of it...

Ohhhh, I just looooove those dimples!!!!

Mommy's Little Helper

Everyone can use a helping hand from time to time.  Or even two.  And children, ever curious and ready to assert their independence at every moment, love to lend theirs to whatever project or cause mommy and daddy are working on.  And every mommy and daddy has learned how to manipulate this beautiful trait of young children for their own self-serving purposes.

We are not exceptions. 

Samantha loves to help, whether it's feeding the cats or preparing her own lunches, emptying the dishwasher or making the beds, folding laundry or dusting.  The list goes on.  When she first began wanting to help, a few years ago, it was really more of a hindrance.  I'd sigh, and let her do what she felt compelled to do, slightly frustrated at having to do it all over again at the end.  One more reason why I love this age she's at now! She can help and not hinder!  She is truly helpful, and my heart swells to see how excited she gets at being allowed the honor of usefulness, of learning new things, of the pride she so obviously feels in her accomplishments. 

"I help?" 

My little helper is always right there for me.  And when she's having a stubborn day, full of pouts and frowns, a day when "no" is the only response she'll elicit, I know that providing her an opportunity to "help" me with something perks her right up.  Her demeanor changes instantly - her eyes light up, the little crease between her eyebrows unfurrows, and a smile returns.  A chipper"Okay!" and all is right with the world yet again.

And mommy gets help with something else.

It's a win - win for all. 

Spreading the Word

Today is Spread the Word to End the Word Day.  Doesn't mean much to someone that's not "in the know," but my mission today is to spread the word to at least one of those not-in-the-know-type-people and teach them a little something about the power of words.

Retard.  What does that mean to you?  Is it a casual term floated around in general conversation with friends (or strangers, even) to mean that something is ridiculous or dumb?  Or is it a derogatory term that perpetuates stereotypes of people with intellectual disabilities, demeans them, makes them less of a person, not valued in society? 

Most people will say it's the former, but they'll be 100% wrong.  "Oh, I didn't mean it like that," they'll say when you call them on their usage.  "I didn't mean it to refer to your daughter/friend/grandchild/otherpersonwithanintellectualdisability." 

Of course they didn't.  I know that.  And I'm willing to give them the benefit of the doubt here, willing to let them have that one transgression, as long as they listen to me and learn something... 

I've heard it from people at work, one of whom I broached the subject with a while back.  He said (surprise, surprise), "I wasn't referring to people with intellectual disabilities."  But you know what?  I haven't heard him say it since. 

Just one person at a time.  

Please, visit http://www.r-word.org/ and take the pledge to end usage of the R-word. 

It's Elementary, My Dear Sammi

I really love living directly behind an elementary school.  A long row of evergreen trees separates our two property lines, offering privacy.  Not like we need it.  Early mornings, afternoons, evenings, and weekends are so quiet there, no people, no noise, nothing.  And we get the grounds almost all to ourselves.  Blacktop and basketball hoops, jungle gyms and other climbing equipment, a running track and lots and lots of open grassy areas (if you're not concerned about dodging the goose poop, of course).  This will be Samantha's home school, eventually.  If not next fall, then most likely the year after (I'll save that for another post, after our IEP meeting in April).  How convenient is that? 

Sunday we finally had one of those beautiful, sunny, warm days we've been craving this whole miserable, cold, mostly snow-less winter.  A day that would put any mother into the Bad Mommy's Book of Shameful Acts if they did not get outside with their children.  A few e-mails to a friend, and a tricycle playdate ensued.  Nevermind that neither Sammi nor her friend were actually riding bikes at the same time, or that Sammi rode his bike, rather than her own, but we were outside.  And we were having fun. 

And Sammi rode the bike.  I haven't really seen her doing this at all, as they've been working on it diligently in PT privately and at school, and the weather hasn't been conducive to me taking her bike out yet.  But pedal she did, and she even watched where she was going.  For the most part. 

I think she's channelling Popeye.  But I did ask for a silly face...

Incidentally, I learned the real limitations of my new camera lens, now that I've had the opportunity to use it outside.  First of all, it's great in low light, so works beautifully indoors.  However, because it doesn't auto-focus, capturing moving targets while trying to see and focus through the glare of blazing sunshine and sunglass-covered eyes (oops) was a real challenge, and most of the shots were blurry.  These were about all I could salvage.  Note to self:  must remember to change the lens before venturing outdoors in the future...

Here she's drinking from a stolen glass of water once we came back inside.  I love this...again, they've been working on drinking out of open cups at school for some time now, but I am too opposed to mess to really try it at home.  Not to mention, drinking out of an open cup makes her drink slower and less, which is not a good thing when we are always pushing to keep her hydrated to counter any constipation issues.  But in the last few weeks I've discovered that she's really good at it!  I probably have the only 4 1/2 year old that doesn't drink out of an open cup solely because we don't let her.   

Note to self:  let her try stuff!!!  She wants to, and she can. 



All in all, a wonderful weekend.