Noo Shooz

It was with a little bit of guilt that I made a particular purchase at Kohls on Sunday.  Nothing to do with Kohls, nothing to do with the $20 I handed over to the waiting clerk, nothing to do with the sweet little pink and white Carter's box.  Nothing to do with the child for whom the purchase was made.

No, it was to do with a vow I made almost 20 years ago.  A promise to myself not to support a "theft" that occurred some time circa 1992. 

Light-up shoes. 

I bought Samantha a cute little pair of light-up mary jane-style sneakers.  And she loves them.  Jumping up and down, and kicking her heels against a couch,floor,chair,step,whatever, nearly bending over backwards to see the flash or orange light on her heels, how could I resist the temptation of the joy they bring her?

But at what cost?  A two-decades-old disappointment to a friend, I guess.  (Lisa, Beth & Tricia, if I've got this wrong, I'm sorry - hope Chris isn't mad that I'm posting this.)

In 1985 or 1986, a brilliant high school friend had an invention.  One that he was well-known for throughout the school, and one that got him both giggles and stares of curiosity or admiration.  He opened up the bottom of a pair of his trademark Nike sneakers, cut holes in the sides of the soles through which he inserted small, colorful lights, and hooked it all together with pressure pads and batteries.  Yep, the prototypes.  The originals.  He entered a contest sponsored by Duracell, got Nike to sponsor him, and won a nice little sum, especially to a high-schooler.  I remember attending a dance in the school gymnasium.  The lights were down low, the music was blasting, and I could spot him easily by the light trail he left as he walked across the room.

But then what?  Well, I'm a little fuzzy on the details of the rest of the story, but let's just say it involved some youthful ignorance regarding patents and an ambitious and unscrupulous employee from Nike.  That employee jumped ship and went to LA Gear to shout his idea from the rooftops, and the rest is history (okay, I think I have a few of the facts wrong here in the telling, but it still doesn't remove the true origin of the shoes).  In 1992, one of LA Gear's most successful lines, LA Lights, was born.   

So yes, I feel a bit of guilt.  And I haven't asked him, but I am curious to know if he's ever bought light-up shoes for his two kiddos...

Wordless Wednesday: The Whole Dirty, Beautiful Truth

Something's Afoot

There are definitely some wonderful things happening with Down syndrome awareness right now.  With the power of the internet, we’re off and running with Facebook status updates, blog postings, and tweets.  Truly amazing how word gets around, and at what breakneck speed!  This community has opened its arms to its own members, offering support in a million different ways, inspiring those on the outside.  I get FB messages and “likes” from my non-Ds-family friends who have obviously received all of my oops-didn’t-mean-to-bash-you-over-the-head-oh-yes-I-really-did posts, who haven’t yet run screaming for the hills and who obviously haven’t blocked me yet (or perhaps they just haven’t figured out how…), and I am grateful for their encouragement and support right back.  I can only hope that they, in turn, have begun to pass my messages of acceptance and respect for people with intellectual disabilities on to their friends.

There still needs to be some muscle added to the mix, some additional star power.  We have self-advocates who are amazing stars themselves, business men and women, and the occasional celebrity with a connection to the cause.  But I don't think that we've had many non-connected champions yet. 

Patricia Heaton, of Everybody Loves Raymond fame, grabbed the ball and ran with it today.  To my knowledge, she does not have a relative with Down syndrome, but someone sent her a message on Twitter that touched her, that made her stop what she was doing and want to make a difference in a really beautiful way.  That message brought to her attention the plight of children with Down syndrome and other intellectual disabilities shuttered away in the orphanages and mental institutions of eastern Europe, without families to love and care for them, without education and stimulation to nourish their individual potentials.  Someone opened her eyes to Reece's Rainbow, a website devoted to finding families for these children, a site that makes me cry every time I visit. 

Patricia tweeted today that she would donate $1.00 for every person who followed RR on Twitter, up to $10,000.  Actually, the check was already written and on its way shortly after she made her pledge.  I dusted off my Twitter account, re-set my long-forgotten password, and worked to get the word out, along with hundreds or thousands of other amazing advocates.  On her FB page she wrote:

"I know there can be big pitfalls to social media, but I will be forever grateful to the tweeter who alerted me to the work of Reece's Rainbow. I clicked on a link to see the faces of those little neglected angels who have passed on, and immediately started weeping. It was so heartbreaking. Sometimes we feel helpless in the face of such horror, but because of the example of Andrea Roberts, we see that, with a lot of hard work and perseverance, there is something we can do. 

Between work and family, I don't have a lot of time. But I do have financial means and a public profile. God charges us to use our circumstances, whatever they may be, to share His love with the world. I had just hit the 10,000 mark for Twitter followers, and the idea hit me - give $10,000 dollars - one dollar for every "Tweaton" who follows Reece's Rainbow. Accomplish supporting this great organization along with spreading awareness. So far, in a few hours, RR has about 500 new followers, and I hope many more to come.

I am involved in supporting various charitable organizations, but I have recently been asking God to show me where he wants me to be. I think Reece's Rainbow is an answer to that prayer. These kids have had very few people to be their voice, but Andrea Roberts has changed all that. I am so grateful to be a part of her work."

Keep it coming, folks!  Let's keep spreading all of the words that can make a difference for our children, for orphaned children waiting to become a part of something that starts with "our," for the children yet-to-be-born. 

About Those T-Shirts: An Extra Push for Lera :-)

For anyone who was interested in the fabulous shirts Samantha and I were wearing in the previous post, they were created by Diane Higbie last fall to sell as a fundraiser for Lera's adoption, but they didn't get the exposure she had hoped for.  Travel expenses related to Lera's adoption are still looming, and any sales will go towards that.  You can find more information about the purchase of the t-shirts here and another photo of the shirt that does not require the ability to read backwards here (also from her blog), or you can e-mail her at SavingLera@yahoo.com.  The shirts are $15 each (with no additional shipping charge), and come in sizes Youth S - Adult 2XL (all pretty much true to size).  She has a good supply on-hand.  Once again, the shirt says, "I have a dream that one day we will be judged by the content of our character, not by the count of our chromosomes."  I'm excited that Samantha is wearing hers to school today.  I think this shirt will get a lot of mileage for us, spreading words of acceptance and hope. 

Feel free to share this post or this information, and help the Higbie family bring Lera home!

Shiny, Pretty Things

I probably should have used this post title for the previous post, about the gorgeous Mardi Gras beads we got in the mail.  And gauging from this first photo, I will say with much certainty that Sammi's feet are much like her mommy's...definitely not shiny, pretty things.  And yes, Miss Samantha's toenails are a bit too long, but she freaks if I try to clip them (fine with me doing her fingernails, and fine with Daddy doing her toes though!), and it's not until they start to curl slightly and dig into the soft flesh of her toes that we begin to realize the dire need to force her hand.  Uh, foot. 

I first painted Samantha's toenails when she was about 3 1/2.  Her poor little nails were so brittle, something I think is often found in people with Down syndrome, that I was afraid to do it before then.  They seem to have gotten a bit better as she's gotten older, and, oddly enough, her fingernails never had any issues.  She was resistant to the idea at first, but once they were done, loved the results and couldn't wait to show everyone.  "Look!  Toenails!!"  This may seem random, or it may be related, but Samantha doesn't like to have temporary tattoos or stickers on her.  I think any change to her body scares her a bit (boo boos are a taboo subject), and while I have never tried it, I'm fairly certain that carnival face-painting would go down very badly.  I'm really hoping she's open to the idea of getting her ears pierced when she's a bit older, but I'll leave that up to her. 

Samantha has selected Wet and Wild #207.  An excellent vintage. 

For those of you without the aid of a compact mirror and for those of you who do not have a natural inclination to read backwards, Sammi's and my shirts read, "I have a dream that one day we will be judged by the content of our character, not by the count of our chromosomes."  Wore those shirts all day, but seen only by the other patrons of IHOP at 7am, and who are we to compete with all-you-can-eat pancakes and those all-important first cups of coffee?  Just wearing them made us feel good, though, even if our message was not spread this time.

A side note here...Samantha is getting really good at brushing her teeth!  We have a battery-op toothbrush that she's even better with, but she doesn't always prefer to use it.  I just can't, for the life of me, figure out how to teach her to spit.  Please, please, I'm begging you, if any of you have any helpful hints, I'd welcome them with open arms!!  I am using a flouride children's toothpaste, although only a teeny, tiny bit on the brush, and she still insists on swallowing before leaning forward to pretend to spit.  "Pah!" she says.  "Look, Mommy, I did it!!"  Uh, okay, yeah, great job.  Not knowing how to spit on command never stopped her from expelling unwanted vegetables from her mouth at suppertime, though.  *sigh* 

And, now, may I present, the shiny pretty things!  :-)  I am a firm believer that pretty much all feet look good with a dab of pink paint, even when poorly applied.

The Colorful Surprise in the Mail

Thank you so much to my blog friend, April for generously sending some real Louisiana Mardi Gras booty!!  I was over at Daily Smiles and saw the pics of the beautiful Miss Em playing with her newly-received beads, and rushed out to my mailbox to find a similar package waiting for Samantha!  I swear, little girls and dress-up are synonymous. 

Wordless Wednesday: Just Me and My Gal

Woo hoo!!  I never get to be in pics with my girl!!!  :-)

Celebrating 91

Gamie turned an astounding 91 last week. 

Samantha and I were thrilled to be able to celebrate with her on our visit up to my homeland of South Jersey this weekend (which I'll write more about tomorrow).  It was a very sweet gathering of my mom and Ray, my Aunt Kathy, Uncle Joe and cousin Aaron, at the Assisted Living residence where my grandmother lives.  

Four generations in the room.  

I'm not sure if Gamie truly knew who Sammi and I were, but she did seem to be having a really good day, enjoying the moment, watching Samantha play, making a wish and blowing out the candles.

I wonder what she wished for...   

Great grandmother and great granddaughter. 



Aunt Kathy made a beautiful and delicious cake.

Good to the last crumb!

Samantha, growling and saying, "Ahhhhh!  So scary!"  Cracked herself up!



Mom and Gamie.



Wordless Wednesday: In Her Element

Moments Treasured

I'd like to preface this with something that's been weighing heavily on me.  I heard a woman in Japan on the news the other night tell of losing her grip on her daughter's hand in the flood waters this week.  If you pray, please pray for the people in Japan.  If you don't pray, please keep them all in your thoughts.  But please, please, please, hug your children tightly, take nothing for granted, and treasure every moment together. 

A moment to keep forever, as most moments are.

A beautiful day with a sneak-peek of the weather-to-come...sunny, mild, tantalizing... 

A perfect day for my little sunflower/buttercup/pumpkin/sweet pea/bunny/butterfly...so many names picked ripe from nature...it's a wonder she responds to any of them, let alone all...

She's my flower child, my blue-eyed princess, my angel...bright as the sun and sweet as honeysuckle, my hates-to-get-her-hands-dirty gurly-girl...



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The Magical Powers of Books

I remember when Samantha was a baby, putting books on her high chair tray to amuse her while Mommy and Daddy quickly scarfed down their own meals (dinnertime was never particularly relaxing...).  We were amazed to find that no matter how the books were set down in front of her, she always turned them right-side up, carefully paging through from right to left, ensuring that no pages were inadvertently missed, no page was left unturned.

I read to her often, although I felt at the time that it wasn't enough.  The diagnosis of Down syndrome, to me at least, meant that I must have to do double-time on academics and well-rounded experiences.  Not like I was about to make her sit and listen to me recite the contents of my dust-covered collection of college notebooks, but I felt that I could cause her to suffer setbacks because I didn't expose her to enough classical music in the car, or didn't sing enough to her, or didn't read the right books, and so on and so forth.  Actually, I had words with Steve one day because I felt that he didn't sing enough to her.  Really?

I don't know if Sammi's love of books is innate, genetic (I could never keep my nose out of books, was the first child reading in my Kindergarten class, and read Stephen King's "The Stand" at age 11!), or a result of our early efforts, but let's just say, it appears that the apple hasn't fallen far from the tree.

Samantha is happiest, no matter where we are, when books are available.  Read a book to her once, and she'll recite the story back, page by page, on her own, in her own slightly alternate take on it.  Take her to someone else's house, and issues of Washingtonian, or Better Homes and Gardens become just as fascinating to page through as one of her own children's tales, fascinating to us as well, as she makes up stories about the pictures on the page.  Take her to a book store, and she's in her element.

An impromptu playdate at Borders on Saturday morning provided a sweet photo opportunity, but first, standing in the checkout line, Samantha proved to me the value of her education-to-date, and the impact of the childhood literary greats on her young mind:

Sammi (excitedly):  "Look Mommy, Dr. Seuss books!"

Me (whaaa...?):  "Where, baby?"

Sammi (pointing to the wall behind the register):  "Right there!"

And sure enough, there was an entire shelf full of Dr. Seuss books on display, from Cat in the Hat to Oh the Places You'll Go.  All of my inadequacies as a parent suddenly flashed in front of me, as I realized that I never knew Samantha even knew who or what Dr. Seuss was, or if I had ever even read a Dr. Seuss book to her (other than Green Eggs and Ham, but the words "Dr." and "Seuss" probably never passed my lips).  Had I missed an important boat?  Was I actually relying on her school to be her sole source of education?  Why hadn't I thought of that? 

I am exaggerating, but I'm sure at least some of you know what I'm talking about...

Three books-worth and a coffee-shop visit poorer in my wallet, there's nothing like the joy of a child, some chocolate milk, and her new books. 

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.