A Year in Posts

Last January I made a conscious effort to begin to really work harder on my blog, to really write from my heart and to attempt to make it interesting.  Not sure if I succeeded on the second point yet, but I think I've managed to accomplish my two biggest goals when I began my blog - to let my friends and family know what we've been up to, and to chronicle the important moments, thoughts, images and events of Samantha's life and development, as well as the (occasional) struggles.  If there weren't 325 posts on this blog (most of which were written this year), I'd love to create a book of everything.  It just sounds daunting and expensive right now, but definitely something to think about for a rainy day (or a decade of rainy weekends).

As the year comes to a close, I am trying to remember some of the pivotal moments from the last 12 months. I got this idea from Beth at Our Typical Life, who got it from scarymommy.com to list one post from each month.  Sometimes it was a post that I found most interesting, sometimes most important.  They in no way sum up the amazing year, and choosing was difficult.  Feel free to pick through, and enjoy, and stay tuned for many more posts in 2011!  Happy New Year!

January  Whose Side is Time On Anyway?

February  The Inadequate Advocate

March  WDSD:  A Day to Celebrate, Make Changes Happen, Reflect and Remember

April  Keeping it All in Perspective

May  Sammi, the Intrepid World Traveller

June  Still Laughing (it's the only way to keep from getting supremely irritated)

July  A Cause for Concern?

August  Old Friends and New

September  The Resource Teacher

October  Ah, this was Down Syndrome Awareness Month and I blogged 31 for 21.  Please scroll back to my October posts and take a look - there are plenty!!  Here's the first:  Let's Raise Awareness, One Day at a Time!!

November  Adequacy in Advocacy

December  Aftermath and Reflection

Thursday Therapy (mine)

Arrrrrrggggghhhhhh...I can't take all the cuteness at once!!!  I'm seriously overloading here.  All the time.  Totally.

I couldn't possibly be more in love.

sigh

Wednesday Whimsy - Dressing-Up with Dolly

Any parent of a little girl knows that dressing up is inevitable, but they may not know that it is also an important part of development.  It shows the power of imagination, teaching self-confidence, problem-solving, creativity, and social skills.  It also helps them to explore their personalities, role-playing and acting out different scenes and emotions.  Little girls don't only like to dress up themselves, but they like to dress up with other little girls, or their dolls.  Sammi doesn't often have other little girls to dress up with, but she sure does have the dolls (and frankly, those dolls need a bit of dress-up every now and then, as they spend most of their lives naked)!

I love being able to catch Samantha doing things when she doesn't know she's being watched.  The number of times I have completely missed getting capturing her tea parties and circle time leadership with her dolls on video is astounding, but I happened to have my cell phone handy the other day as she explored the new dress-up bins I set up in her room.  The pics suck spectacularly, but the fact that baby was wearing a purple tutu was too cute not to post here.

Aftermath and Reflection

The days following Christmas are always kind of funny. Not funny as in ha ha, but just a little odd. We’re always so pumped up and excited about how exciting Christmas Eve and Christmas Day were that we’re almost stunned into silence when it’s all over. I mean, how many times do you return to work or run into someone while you’re out and about and hear the cursory, “How was your Christmas?” And how many times do you reply, “Oh, it was really nice! How was yours?” And their response is, invariably, “Oh, it was really nice!” Sometimes more gets said, but I doubt anyone’s really listening, as they’ve gone on to revisit their own happy memories inside their heads as the other is speaking theirs out loud. 

So, I have my blog. I can tell whoever wants to listen about our holiday…

…about a child knowing that Santa would be there that night, helping to put decorated Christmas cookies on a festive ceramic plate as I poured a glass of milk, about her insisting that they be placed on the mantle (“chimney!”) instead of on the floor by the tree.

…about a child waking in the morning to discover two wrapped packages waiting at the foot of her bed, a glimpse of what awaited her downstairs (oh, who am I kidding? She woke up wet, calling to us to take her to the bathroom before she even saw the gifts, so the presents had to wait – she was no less excited by the delay, however).

…about how wide and sparkling her eyes became when she saw that Santa had eaten the cookies and drunk the milk (“Santa eat cookies and drink milk!”).

…about the unwrapping of the presents, and the need to open and play with every toy and read every book (rushed by mommy and daddy who knew that we’d be there all day and dinner would be late if we let her take too much time between gifts).

…about the impromptu drive Samantha and I took at 8:30am to look for fresh bread for dinner, snow flurries falling fast on the car’s windshield, a child’s patience ebbing as every supermarket appeared to be closed. (After giving up for the moment, I ventured out again in the afternoon to find a single Safeway open in another town, loaves of fresh-baked crusty bread ready to go and still warm in their paper wrapping, employees cheerfully basking in double-time pay.)

…about the aromas of garlic, mushrooms, thyme, rosemary and roast lamb filling the rooms, warming against the gray and chilly day outside (Steve is a truly amazing cook, slaving in the kitchen for the better part of the day, but turning out a perfect meal!).

…about the arrival of family and friends for the very first Christmas hosted at our house, the opening of even more presents, and the sharing of a traditional English Christmas dinner, complete with paper hats from gold crackers and a flaming Christmas pudding for dessert.

…about the angelic child – the one who enjoyed every minute of the day, who provided endless entertainment to the rest of us, and who sat uncomplaining and downright cheery through all three courses of dinner.

...about staying in jammies on Sunday, no need to do anything.

And so we begin to decompress, to breathe a sigh of relief that all of the hectic fury of the season has come to a close for another year, still nursing the euphoria and still feeling that little bit of sadness that it’s over. It’s not about presents, although they certainly are a fun tradition. It’s all about how the season makes you feel. Christmas has an inherent warmth and glow that is just there. I know that there are many, many more Christmas memories to be made at Christmases-future, and that the next year will go by even more quickly than the last. Hopefully this will serve as a reminder to enjoy and appreciate the quiet seasons as well, before the next busy summer that marks the halfway point to the next Christmas.

I hope you all enjoyed your holidays, and look forward to catching up on your blogs shortly!

Christmas Pics (oh, what a dull and unimaginative title!)

I don't have the time to write much now, but thought I'd leave you with a few photos from the weekend.  My parents gave me a new lens (50mm/1.8) for my camera, which I'm thrilled about!  See if you can guess which pics were taken with it (not all of these are)...

Twinkling lights on Christmas Eve





Santa has paid a visit...

...and had a snack.

Happy and most cooperative little girl!

The dinner table, set for guests.

A quiet moment (well, not really, but it looks like it was...)



Angel with butterfly wings.



Tea?

Cake?

Aftermath.

The Elves of Christmas Present, or Adoption of a Different Kind

Elves come in all shapes and sizes.  I'm not a real elf, but I got to play one on Sunday when I helped to deliver gifts to some local families in need.

Northern Virginia is a big place, with an equally big (massive, if you will) Down syndrome population.  A group of Ds parents from my town and a few of the surrounding towns decided to "adopt" two families from the Down syndrome community here in NoVA this year for Christmas, to brighten their holiday with gifts and necessities.  With the help of my friend and Parent to Parent coordinator, Heather, two families were found.  And trust me when I say that these two families were definitely in need. 

Hard times for most people mean something completely different than the definition these families know. 

We're talking about parents who dread the discovery that their children's feet have grown because it means they have to buy new shoes.

People who have a roof over their heads...just.

People who have little more than the love they feel for their families, and few "frivolous" personal posessions.

One family didn't have a Christmas tree.

When asked what they wanted most that we could provide for them as gifts, the humbleness of their basic needs brought tears to my eyes.  Shoes.  Warm clothes.  A chicken and a bag of rice.  Really, this put things in perspective for me, as I would hope it would for anyone.

I won't say much about the visits to the homes of these two families, as their anonymity has been assured and I don't know who reads my blog.  But I will say that they were all lovely people who love their children.

We are very fortunate, indeed.  I know I end my posts frequently with statements of gratitude for the things I have, the opportunities I'm afforded and the joys I have in my life.  We don't have a lot, but I'm so glad for the opportunity to help someone that has significantly less.

Sad Time of Year

I feel a little bit silly saying this, but at 5 days before Christmas, I'm a bit sad.  Not sad in the usual melancholy way people can get at this time of year (seasonal affective disorders, missing family, etc.), but sad because it's almost over. 

Really! 

It hasn't even come yet, and it's almost over in my mind.  I've shopped, wrapped presents, helped decorate the house, baked, visited Santa, listened to Christmas music ad nauseum, you name it...and I've loved every minute of it.  I'm not sure if it's different this year over past years, but it kind of feels like it.  I guess it's because Samantha has been able to help and participate more this year than in any of her previous four Christmases (oh, holy cow, is this seriously her 5th Christmas???).  Not like she's all that helpful in baking cookies, but she thinks she is, and just the fact that I got 5 minutes of pouring and stirring out of her and another 5 minutes of her just watching and being interested (and sticking her hand into the batter bowl to grab some nice, sweet, buttery goo) was enough for me to say she helped.  And it was wonderful.  Her appreciation of brilliant holiday lights, of colorfully wrapped presents and of the soft and silent falling snow has warmed my heart beyond any possible description.

We had a beautiful moment the other night.  The fire was lit, Christmas music was playing, the tree was twinkling, Steve was wrapping presents, and Samantha was standing on a stool in the kitchen attempting to sprinkle (read:  pour uncontrollably) rainbow sprinkles onto a mushy raw batch of green Christmas tree cookies, giggling as she did.  So many things to come together at once, one brief moment as a Norman Rockwell confection.  I know there will be many more such moments, if not this year, then the next, or the one after that, or the one after that. 

Just 5 more days.  The joys of waking on Christmas morning and seeing a child's eyes light up as she discovers that Santa has been here (as evidenced by cookie crumbs, an empty glass of milk, and some presents sitting at the foot of her bed) will be upon us.  The lamb and potatoes will be roasting in the oven, company will come, and wine will flow.  For a few hours we can prolong the experience.  Then everyone will go home, we'll clean up, and it'll be over for another year. 

At least we get to keep the decorations up for a few more days, and we'll have new memories of the best Christmas yet.

That's something, right?

First Snow of the Season

I've been a bad blogger this week.  Soooooo much going on, as is expected when there's a HUGE holiday looming just around the corner.  I interrupt this blogging silence with a brief post to share some snowy fun.

Samantha got the double WOW factor on Thursday with not only a visit to her school from Santa, but with a visit from the first snowfall of the season!  Upon waking up that morning, there was nothing on the ground.  Nothing.  But we knew it was coming.  I had been talking it up with her, so she woke up asking for it, and was very excited at the prospect. 

And she loved it.

A Pox on Our House!

Okay, well not really a "pox," but sickness has descended.  Started off with nasty, nasty colds for Steve and Samantha that never really went away.  Which then changed to a fever for the little one and a sore throat for Daddy.  Which got diagnosed yesterday at Urgent Care as strep.  And quite a serious case for him, unfortunately. 

I'm not sure how we should feel about our Wednesday night sick appointment at Samantha's pediatrician's office.  Steve wants to call and give them a mouthful.  It's a large practice, so we don't often get to see her regular doctor (who we love), and the doctors that cover the evening sick cases are truly a random luck-of-the-draw.  Wednesday night it was a visiting doctor, whose name I don't recall, from their sister office in another town.  She was nice enough, and we explained that Samantha had had a fever all day, going up to as high as 101-something.  Now, Sammi almost never gets fevers.  She's just not one of those kids.  She went through teething, including all of her molars, without so much as a whimper, a speck of drool or a spike in temperature.  She's had ear infections with no symptoms other than a whole lot of whining.  And the list goes on.  Not to say she's never had one, but just saying they're rare.  Anyway, the doctor listened to her heart, looked in her nose, ears and mouth (briefly) and declared that her throat was red, and that she must have a strain of the virus that causes hand-foot-mouth disease, and that there's nothing that can be taken for it.  She said she'd be fine in a few days.

So we left.

Samantha seemed to start to feel better, and her temperature seemed to return to normal by Thursday afternoon.  We're now questioning the battery life of our little temporal thermometer, but she definitely didn't feel hot to the touch anymore.  Steve, on the other hand, got worse and worse, barely able to get out of bed.  On Sunday he drove himself to Urgent Care and reported back that he had a particularly bad case of strep.  The doctor at the center suggested that he get Samantha in for a strep test asap, and the rest is history (incidentally, her temperature registered 100-point-something there, further leading us to believe that we may need to change some batteries...). 

I, on the other hand, tested negative and have never felt better!  LOL 

Should we be annoyed that the pediatrician's office never even mentioned strep or thought to suggest a strep test?  Wouldn't a red throat lead to some further investigation on their part?  Perhaps they would have then spotted the rash she was developing on her arms and torso (which we had not yet discovered).  I think I'm annoyed.  Not like I think medical professionals should be perfect in all diagnoses, because I'm sure they're not, but given a preschool-aged child, a red throat, a fever, and a season conducive to that sort of illness, I'd think they should have checked. 

I am very, very thankful, though, that Steve's strep drove him to visit the clinic.  He had thought it was laryngitis, as he was also losing his voice (lo and behold, the doctor said it was strep-induced laryngitis!), and were it not for the unending pain, he would have waited it out.  Samantha had seemed better and we thought that whatever she had had passed (other than the snot pouring from her nose continuously, which I'm not sure was related or not)  Strep apparently can seem to go away on its own, but actually does some pretty nasty things to the body, especially in children. 

Yes, very, very thankful...



The Most Important Post - Part II

Just a quick post to say that the outpouring of support towards the adoption fund of little Olga has been astounding!  Thank you to everyone who has donated - your efforts, no matter how small, have brought her current fund total to $5278!!  And rising.  And just a quick note to those of you who click on the Reece's Rainbow link to Olga's page (in my post below), the reason the amount has not risen past $60 is that the funds are registering on her Angel Tree total (click on this link and scroll down close to the bottom of the page to find her) over the holidays.  This eliminates the fees charged by Paypal. 

We are truly an amazing community to pull together like this.  It's also testament to the kinds of parents we are to our children, those that nurture and love unconditionally.  Now it's just up to someone to step forward and adopt this beautiful little girl.  Oh, how I wish it could be me...

Wordless Wednesday: The Princess and the Unfairly Stereotyped Jolly, Weight-Challenged Man in Red

The Most Important Post...

My heart breaks when I read about all the children on Reece's Rainbow, those orphans with special needs who have been abandoned and, in the case of the children of many of the Eastern European countries, will be institutionalized when they turn 5.  I, myself, would love to adopt.  Financially it's not in our immediate future.  But I'd like to be able to do my part to spread awareness among my readers, hopefully to make a difference in at least one child's life.  I read this post, re-printed on The Naretto Family blog today.  I, too, am re-printing it (along with a link to the original post by Patti at A Perfect Lily).  Please read below, and help bring the beautiful little Olga home to someone who can love her forever.

Monday, December 6, 2010
The Most Important Post I Have Ever Written

Dear Readers,
My hands are shaking as I'm typing, so if I misspell some words, that's why.
I spent the day with a little girl on my heart..her name is Olga.
I can't even tell you the burden I have for this little girl.
I am so heavy of heart because of this little baby. She could be my Lily.

Olga turns five next month. In Eastern Europe, babies with Down syndrome are deemed unacceptable at birth. Olga has spent her life in an orphanage...until now. Soon she will be transferred to a mental institution. Forever.

If you don't like to read those words, if hearing about the plight of these orphans turns your stomach (it does mine), if you just can't bear the thought of what happens to those children...
Then be thankful.
Be thankful you have the option of hitting that tiny x at the top right hand corner of your screen.

Because Olga doesn't have that option.


She can't close her eyes and make her whole bad-dream-of-a-life go away.

She is destined to a life of abandonment and grief and ugliness so horrid most of us can't even stand to watch a five minute video about it.

So today, I was praying and crying and writing this post and asking God- what would you have me to do.

Sam came home and we ate dinner as a family, and I tried to enjoy our time together as a family. But I wanted him to read my post from this afternoon, part two of my interview with Lisa Peele, who adopted this year from Reece's Rainbow....I wanted him to tell me what we could do for Olga. We don't have the income to qualify for an adoption on Reece's Rainbow.

But someone out there does.

Tonight while I was searching other adoption blogs, trying to see what could be done to raise money for Olga's adoption fund on Reece's Rainbow, I ran across an amazing story.

One mama, blogging from the heart, raised $20,000 for one little orphan. In five days. She called her post The Most Important Post I have Ever Written. (please click on this link if you want to read her story.)

So tonight I was reading and praying and thinking and brainstorming about how we could help Olga. My husband was doing the same thing, while drafting a letter to friends on his laptop, asking them to help. As I stared at the blog post I mentioned above, I said to him, "I just read about a mom who raised $20,000 in five days."

"How?" Sam asked.

"She had a giveaway on her blog. For an iPad."  **side note: I am so stuck in the nineties...I don't even know what an iPad is. But it must be good :)***

My littles kept coming in for extra goodnight kisses, so I went to tuck them all in and finish up some dishes in the kitchen...still praying... brainstorming... thinking what I could sell...I even looked at my cock-a-poo and wondered how much I could get for her:)

Sam walked in the room with a grin on his face...told me to close my eyes and put out my hands.

And in them he placed a brand new iPod touch.

I have no idea how to use it, or why people like them...but I knew what he was thinking.

Can I just say I love that man????

Turns out he opened a bank account 6 months ago, and "earned" a brand new iPod touch. the NEW iPod touch with a built-in camera. It just came in the mail. He was going to sell it and spoil me with something I would really use for Christmas;) But he knows what I REALLY want.

I want to bring Olga home.

We don't meet the income requirements for Reece's Rainbow.

But someone out there does.

And this is where you come in, dear readers.

I'm giving away this brand new iPod touch (valued at $229 )to one lucky commenter. And I am hoping, praying, shamelessly begging you to give til it hurts. And tell every blessed soul you know about this giveaway. As my husband loves to say- tell your in-laws and out-laws too! Blog about it, Facebook about it, tweet it, text it...just get the word out- Lily is giving away an iPod touch, and all you have to do is donate to Olga to enter.

So here's the deal:
*leave one comment if you give to Olga at Reece's Rainbow (click here!)

*leave another comment if you blog about this giveaway (post your link)


*leave another comment if you post about this giveaway on FB


*leave another comment if you tweet this giveaway.


* leave another comment if you sign up (at the bottom of this blog) as a follower...and if you are already a follower, you can leave a second comment as well;)

Five ways to enter...but only if you first donate to Olga.

If Olga has a huge amount in her fund- bank on it- a family will come forward to adopt her. There's not a lack of families who want these babies- there's a lack of finances.

Please spread the word, and please pray for Olga.

I can't think of a better Christmas present, then knowing Olga will be rescued.

Random.org will draw a winner from Lily's comment section Saturday night.

THANK YOU AHEAD OF TIME!!!!!

I'm going to bed a happy woman:)


oxPatti


Posted by Patti at 10:40 PM


(By the way, feel free to comment here if you feel like it, but remember the iPOD giveaway is through Patti's blog.)

Mixed Bag

I'll keep this post brief. I probably don't really even have enough to say today, but since it's Monday I feel like I should post something.  (Note:  I just proof-read this, and realized that the previous two sentences are complete and utter lies.)

This weekend was kind of a mixed bag of stuff. I had lots of fun plans set up in my head, involving a holiday party, a playdate and a concert, but you know what they say about the best laid plans... The DSANV holiday party went off without a hitch, at least. I had been looking forward to it for one primary reason - so Samantha could see Santa for the first time this year. It's not like she's obsessed with him or anything, but it's been so much fun watching her grow over the last year, listening to her mention things she's seen or things she is looking forward to doing, and Christmas and Santa have been pretty major players. If you ask her what she wants Santa to bring her this year, she says, "presents!" Smart girl! She still doesn't know what exactly she wants, so hopefully that will be the exciting new developmental phase to look forward to next year. I think she's just happy having new toys, or new anything.

Speaking of new, on Saturday, Steve put princess/castle appliques up on Samantha's wall, door and headboard while she was downstairs playing with me. When she went back upstairs, she was SO excited about the new decor. See, just about anything new is good, especially when it fosters imagination, of which she has plenty. Change just one thing in a room, any room, and she is all over it, instantly. Can't get anything past that kid.

Steve did a lot more decorating this week, including hanging the lights outside and the Christmas stockings over the fireplace. The latter was done while Samantha was napping, and when she woke and came downstairs, her eyes went wide and she said, "Wow, beautiful stockings! Thank you, Santa!"  She now says thank you Santa to any new holiday decorations that appear when she's not in the room. 

Anyway, Samantha was absolutely thrilled to see Santa at the holiday party, and I got some cute photos, which I'll have to post later this week. Lucky little girl will get to see him yet again this week at her school. I can't make it to that visit by the jolly, bearded weight-challenged one, but hopefully Steve can go and get some photos. Then, I'm sure, we'll make a paid visit to the jolly, bearded weight-challenged one of-the-shopping-mall-variety before the season is over.  (Was my description of Santa falling into unfair stereotypes? Like what happens to our kids all the time? Maybe I shouldn't characterize him as being "jolly." I'm willing to bet that, like our kids, he certainly can't be happy all the time...? Shame on me.)

On Sunday Samantha became supremely snotty. Classic cold. Yuck. We had planned on a playdate in the morning, with an outdoor holiday concert at Wolf Trap in the late afternoon, along with one of her friends from her typical school. :-) Sadly we had to bow out of both, partly due to her condition (which included plenty of contrary and cranky in addition to snotty), and partly due to inclement weather (gusty wind, feeling like it was in the teens).  Wolf Trap puts this concert on every year, and every year I want to go, and every year we can't go.  The first year we tried, Samantha was sick.  The second, it rained buckets (I'm not brave enough to drag a toddler out into crap weather).  The third it snowed.  And this is the fourth.  *sigh*  What ever happened to the early Decembers of the years before Samantha was born?  I kid you not, there were like 3 years in a row where it was in the 70s or 80s in early December.  One year I remember riding my bike along the Potomac to the National Mall dressed in a tank top and shorts, on December 8th.  I'll never forget that.

So, I've rambled on enough for now.  I actually wrote a lot more than I'd expected.  That's what happens when I get started.  I have this stream of consciousness issue that I try as hard as possible to reign in, and while I didn't go off on too many tangents this time, I'm sure I'll be completely out of control one of these days and (hopefully not) scare all of you off.  My husband gets fed up sometimes when I will talk about 3 or 4 different topics, one after the other in rapid succession, in the course of one or two sentences.  It's not pretty, especially when I consider that I'm the only one that truly knows what I'm talking about...

Friday Frivolity: "Olivia, Meet Olivia!"

From a recent field trip with school...

A Sammi Funny

So this is old news if you read my post on Facebook last week, but I'm still chuckling over it.  This is the 2nd exciting new developmental milestone I alluded to in my post on Monday.  I guess technically it's not a milestone, but to me it is.  It's that moment when you realize that your kid, like other kids of the same age, can come up with some unbelievable, innocently funny stuff coming out of their mouths, the kind of stuff you read on the last page of Parents Magazine - you know, those unintentional double entendres, those misunderstandings that result in a gaffe that keeps on giving.  Hehehe.

Maybe I'm making more of it than it is, but hey, indulge me. 

Samantha has a childproof door handle on the inside of her bedroom door.  It's ostensibly to keep her from wandering around.  I actually don't think she would anymore, but I worry more about her possibly getting up to go to the bathroom in the middle of the night and falling and getting hurt in her sleepy haze. 

At any rate, she closed herself in her room while playing one morning last week, unable to get out.

Sammi:  Mommy, open the door!

Me:  What's the magic word?

Sammi (without missing a beat):  Abracadabra!

I was floored, having been caught completely off-guard by her response.  The incident will probably be ingrained in my memories forever, as such a typical moment.  Trust me, I grasp on to those typical moments when I can get them, and have found that they occur with more and more frequency these days.  And I am proud.

Wordless Wednesday: Rolling the Sillies Out

A Grampa Kind of Weekend

Thanksgiving has come and gone, and with its passing, has ushered in the whirlwind that is the holiday season.  Seriously, it's like all of a sudden everything is about to explode with color and sound, movement and scent.  And it isn't going to stop until January.  And I love it.

We enjoyed Thanksgiving dinner with my mother and my step-father, along with two friends of the family on Thursday at their new condo here in NoVA.  I made whole-berry cranberry sauce, and Steve made sausage rolls and honey-ginger carrots to accompany the amazing feast my mother prepared.  I seriously don't know how she does it, and am not sure I want to know, to be honest.  But I am always very, very impressed.  We have decided to host a traditional English Christmas dinner this year at our house, which should be both fun and interesting.  Steve will do the majority of the cooking, which, I'm sure, will be amazing, and I'm sure that will warrant a series of blog posts in the future...

On Saturday Samantha and I drove down to my parent's lake house for the weekend, as we hadn't been there in a while, and Sammi was excited to spend more time with her grandparents.  As beautiful as the lake is in the summer, it's almost more beautiful in the winter when the leaves are gone and the view from the nearly floor-to-ceiling windows is unobstructed and  just spectacular. 

Below are some pics of Sammi and her Grampa.  :-)



Reading on Thanksgiving night



Reading at the lake

                                      

"Helping" Grampa plant



The Naming of the Dolls

Sammi has hit a few really important developmental milestones recently.  Well, I assume, they're important.  I'll refer to only one in this post, in the interest of not writing yet another book.

The first one I've been holding my breath and waiting for for a long time.  The Naming of the Dolls.  Certainly, for several years now, Samantha's dolls and stuffed toys have had such wonderfully descriptive and creative names as "baby" or "bear."  I've asked her what their names should be, and her answers remained the same - baby or bear, or whateverotheranimalitmaybe.  Which is just fine, but something was still missing from the picture.  We've suggested names for a few of her dolls, and occasionally one would stick. 

About a year and a half ago, Samantha received a toy Care Bear.  I asked her its name, and she responded "Max."  Nevermind that the bear is bright pink, the name "Max" holds a point of reference for her, as in her long-time favorite cartoon, Max and Ruby.  It's not like I'd expect her to pick a random name from somewhere.  I was pretty excited about the bear's new designation, but I never heard her call it Max again, and the bear got tucked away somewhere in the bottomless depths of the stuffed-bear-basket in her room, forgotten by both of us.  Bears went back to being just bears, and babies continued to be just babies. 

Fast forward to a week or two ago.  Samantha, loving pretend-play of all sorts (usually scenarios involving babies in time-outs for hitting, visits to a doctor's office for itchy-foot-itis, bedtime routines or just general doll-house play), has begun to hold circle-time sessions with her toys.  I didn't realize it at first, but after listening in and spying on her a bit, I've seen her line up several bears and babies next to her, singing some sort of "good morning" song that I assume they sing at school.  It's a song where they call out each person by name.  She had started out using just her dolls that already have obvious names attached (like her Max & Ruby dolls, Olivia, and Tolee, HoHo and LuLu from Kai-lan), singing (without carrying any discernable tune whatsoever), "Good morning, Olivia, Good morning, Olivia, Good morning, Olivia, How are you today?" and so on and so forth, down the line.  One of her baby dolls got added to the mix last week.  I was in another room, but heard her in her room speaking to Marie.  Intrigued, I popped my head in, and saw her holding one of the dolls she's had since she was less than a year old (see the photo above).  Excited about the answer I hoped to receive, I asked her, "What's that baby's name?"  And sure enough, I got the answer I wanted - Marie.  And yes, she does know someone named Marie, a real girl that she's played with many times.  

A few days later, the licensed wunderkind of Nick Jr. were mostly all replaced by random bears and babies.  And the circle time song changed.  It was music to my ears to hear her go down the line, calling them out each by name, Marie, Jack, Olivia (yes, Olivia was still there), Milan and Max (the return of the forgotten Care Bear!!).  I was one proud mommy!  And the names stuck.  Each one still retains its new identity, holding a new and treasured place in her heart.  No longer relegated to the bottom of any basket, they now hold prestigious spots on her bed, and at the forefront of all games of pretend-play. 

Creativity is a beautiful thing...

Creating Smiles, Giving Thanks

Thanksgiving is upon us. Unbelievable, but true. Makes me feel old, thinking about how quickly time is passing, but that commentary can be saved for another post at another time.

While I’m thankful for SO many things, not the least of which are my family and my (our) health, I thought I’d make this post strictly Samantha-centric. Let’s face it, the (my? our?) world revolves around that child. My blog friend over at Chromosomally Enhanced posted 21 things about her adorable daughter, Maddie, that make her smile, and just the fact that Samantha also makes me and everyone around her smile constantly, is reason to give thanks, so I’m stealing that idea.

These exist in no particular order:

1. how she asks, “Mommy, you happy?” as her gauge of how copacetic things are and whether all is right with her world

2. how she “wakes” her daddy up by tickling him and saying, “tickle, tickle, tickle!” a la Kai-lan and Mr. Sun

3. the way she tries to whistle by pursing her lips and saying “hoo hoo hoo”

4. her generous but mischievous spirit, offering everyone around her a bite of her snack, then snatching her hand and proffered snack back and giggling

5. her empathy for those who are sad or in pain

6. how she totes her Olivia doll everywhere she goes

7. her attempts to convince us she thinks something is yummy (when she really thinks it’s yucky) by scrunching up her face in disgust and saying, “mmmm, yummy (insert name of yucky vegetable here)"

8. her sweet little voice when she sings her ABCs or Happy Birthday

9. how she treats me like one of her dolls, tucking me into her bed and scolding me if I speak or try to get up or even open my eyes (“lie down! no talking! go to sleep!”)

10. her ability to charm the pants off anyone we meet (seriously, maybe we're just lucky, but I have never gotten a negative reaction to her)

11. how gentle she is with the cats

12. her desire to “help” with whatever you’re doing

13. her intoxicating blue eyes

14. her evil laugh (oh, she is so up to something!)

15. how she stalls at bedtime, making every detour known to mankind before finally heading for the steps to go up to her room, me right behind her, attempting to corral her

16. how she announces her entry to the day when I walk into her room in the morning or after a nap with, “I wake up!”

17. her ability to love unconditionally

18. how she stops to hug or kiss each and every child and baby we walk past when we’re out and about (okay, this is actually kind of annoying, but sweet nonetheless)

19. the scar on her chest that signifies how truly thankful we are that her heart has been repaired

20. all the out-of-the-blue hugs and kisses that are planted on me when I least expect them and most need them

21. hearing “I love you, too, Mommy.”

Characters Unite: Take the Pledge!!!

Today I was made aware of a campaign by the USA Network to get people to take a stand against intolerance and promote acceptance and respect.  This covers so much ground, from the realms of disability, bullying, gender-based intolerance, religious tolerance and general hate crimes.  And the most wonderful thing of all, they're donating $1.00 to their non-profit partners, including the American Association for People with Disabilities, for every pledge made over the next 4 weeks.  In the description of the campaign's mission, they write:

"(The) USA Network launched Characters Unite, a multiplatform campaign designed to combat intolerance, prejudice, discrimination and hate, and to promote greater acceptance, understanding and mutual respect for all people.  Because life is richer and we are stronger as a country when we see beyond stereotypes and appreciate each other for the characters that we are."

This campaign comes at a good time, a time when the news is blanketed with stories of bullying, some with unspeakably tragic endings.  This holiday season, give thanks for the love and compassion we are able to show to others, and know that we can make a difference, especially if we all work together.

Please view USA's brief PSAs here and please take the pledge here. 

Repost this wherever you can, and get the word out!!

Adequacy in Advocacy

Nearly a year ago, I wrote a blog post called The Inadequate Advocate.  I felt that while I am aware that there are endless issues in the Down syndrome and disability continuum that require strong advocates to help work through and raise awareness, I was unwilling to sacrifice the time that I felt it would take away from my family to do so.  I work full-time, and treasure every moment that I can spend outside of work with my family.  My daughter shouldn't have to know her mommy as someone that's sometimes there, because she's off attending sessions on the Hill (one of the guilts of living so close to the nation's Capitol) or somewhere else to provide solidarity in numbers in front of local or state government representatives, even if it's all in the name of Down syndrome awareness and for her benefit.  There are so many opportunities for this sort of advocacy, and peer pressure can be a bitch. 

But what I was not aware of at that time, and what became clearer to me from the responses I received to that post both on the blog and on Facebook, was that advocacy takes so many different forms.  Sure, there are people who can do that kind of advocating, but speaking out for her anywhere from school meetings to Facebook, putting together the DSANV calendar every year, writing this blog...are all ways to advocate for her, while refusing to compromise my first mission of being Samantha's mommy. 

Please watch the brief video below, where Martha Beck, a writer for Oprah Winfrey's "O" magazine and mother of an adult son with Down syndrome, talks about advocacy.  Wish I'd read this last year, but hope it helps those of you out there who may feel helpless every now and then.

Newest Snapfish Book (Updated at end)

Just a quicky today.  I received my new photobook from Snapfish last week, and am completely blown away.  I have purchased books before, but this one was a larger format, and, I must say, that makes a huge difference in the aesthetic quality!  Can't post a pic here, but here's the link if any of you are interested in viewing it!

http://www5.snapfish.com/snapfish/projectshareewelcome/l=9741592014/p=983211290348596413/g=123367881/cobrandOid=1000/COBRAND_NAME=snapfish/otsc=SYE/otsi=SPBKlink/

UPDATE:  I see now that unless you have a Snapfish account (which is free, and easy to create, and they send you lots of great offers via e-mail), you probably won't be able to view the book with the link above.  Which sucks.  So, while the book is beautiful, Shutterfly allows you to embed the projects directly in your blogs, etc. (see my Shutterfly book embedded at the top of this blog) and to share it much more easily.  Something to be said for that...  Sorry!!

And just because I haven't added a photo in a while, here's one for smiles.  :-)

Phone Call from a Little Piece of Heaven on Earth

Steve (to me, on the other end of my office phone):  Would you like to talk to Samantha? 

(Would I like to talk to Samantha whilst toiling away at my desk at work, pushing papers and typing the prints right off my fingers?  Let me see...uhhh, yep!)

Samantha (taking the phone from her Daddy):  Hi, Mommy!!

Me (melting into a happy little puddle of Mommy-like goo):  Hi, baby!  How are you?

Samantha:  Good.

Me (already in posession of the correct answer to my question):  Where did you go with Daddy?

Samantha (not knowing the name for Starbucks):  Coffee shop!

Me:  What did you have at the coffee shop?

Samantha:  Cake.

Me (again, knowing the answer, as it is their once-a-week after-school ritual that she now asks for when he picks her up):  And what else?

Samantha (pronouncing each syllable deliberately, enunciating carefully):  Chocolate milk!

Me:  Yum!  How was school today?

Samantha:  Good.

Me:  I'll see you soon, honey.  I love you!

Samantha:  I love you too, Mommy.  Bye bye!

The Typicalness of Friendship, Part II

Most days I really want to take the time to create a (reasonably) well-crafted post, using all the words I'd like to use, and getting out all my thoughts in a (reasonably) clear, (reasonably) logical order.  But then there are days when I have only about 10 minutes to blog and just want to get the words out, with more emphasis on content than on the picture I want to paint.  It's kind of like photography - you can have, in your mind, the most perfect shot, all the colors, the poses, the backgrounds, set up in perfection.  But circumstances work against you (lighting, an uncooperative subject, a short window of opportunity), and you settle for just documenting the moment rather than capturing a feeling.

Anyway, today started out as one of those fly-by-the-seat-of-my-pants blog days, with just a couple of moments in which to write, but I did manage to eke out a little extra time in my life, and dedicated it to this post.  Uh, instead of doing something else with my multiple seconds and minutes, like watching tv, reading a (rare) book, cleaning the house.  Tempting, I know.

On Saturday, Samantha was invited to a birthday party, for one of the "typical" children in her "typical" school.  I suppose I could rejoice in the fact that this was her first fully non-disability-related birthday party invitation (other than the ones we've gotten for my friend's son every year).  But I almost don't count it as such, because there are always so many "typical" kids at most of the birthday parties she goes to.  Also, considering she's been in school since she was 2, that adds up to a whole heckuvalot of birthday parties.

But the real interest in this party for me, was that I could actually meet her classmates, meet their parents, see how she interacts with the other children and how they interact with her.  I had written before about how I never get to drop her off or pick her up from that school, and have no real visibility into her day there.  I just get the 2nd hand reports from Steve, or from Samantha's resource teacher.  And I had also written before that I thrive on it, gleaning every little detail for clues to her future.  Yes, I know she's only 4...

I must say, I was blown away.  I didn't feel at all that she didn't fit in (okay, other than the fact that she sat for about 20 minutes eating every last teeny tiny drop of ice cream cake off her plate when the other kids abandoned theirs mid-consumption to go back to the bouncy-thingies to play), and was really, truly heartened by the way the other children interacted with her.  I believe that they know she's different in some way, needing some extra help with things, but they don't really treat her too much differently.  They seemed to have developed a patience with her, an ability to help her do the things she's not as good at.  They were happy to see her, encouraging her to come do the things they were doing (even though my stubborn little girl could not have cared less if she was playing alone or with them).  As she climbed the long "staircase" up to the top of the blow-up slide, taking her time and being careful, she caused a traffic jam to develop behind her.  But I didn't hear even one complaint from the others.  Occasionally someone would sneak under her arm to climb up ahead of her, but most just waited, calling words of encouragement.  I discovered later that if I told her, "go faster, Sammi!" she could and would climb up much, much faster.  If only I had thought of that then...

While I didn't get too much time to speak with the other parents, it was clear they treated her just like any other child.  She was particularly attached to one of the dads (one that Steve had already told me she liked), and launched herself into his arms when we arrived.  Something I found rather curious, though, was that the mother of the birthday boy was telling me that her son is a real challenge in the classroom.  She said that he has a hard time sitting still and focusing, to the point of disruption during group times.  See where this is going in my head...?  Remember my post about our meeting with the school, when they told us that they weren't sure about Samantha's placement in the class since she couldn't focus during group times?  Uhhh, I certainly hope a similar discussion was held with his parents...I sure didn't want to ask, and didn't want to discuss our experience with her.  There's a new teacher in the class now, anyway, and Samantha seems to be more interested in her than in the other.  Or at least she talks about her more.

I'm very proud of my little girl, holding her own, being a good friend.  Her classmates are drawn to her, I think, because she's nice.  One of the parents mentioned that to Steve one day.  She doesn't know how to speak ill of anyone, or how to exclude someone.  Children see kindness and heart.  I like to think that she will always be able to exude these qualities, and certainly hope that children of all ages will still be able to see this, beyond preschool.    

For the Love

Gina and Sarina are sisters, one born with Down syndrome, the other born to care for her, both inseparable and as dependent on her sibling as the other. Gina Favazza Rowland, one of my Facebook friends, has recently published a book of her life with Sarina, as the sister born with a purpose. For the Love follows their journey from childhood to adulthood, the ups and downs, the struggles with family, the struggles with “the system,” the road to independence for each, and the unwavering love between them through it all. The title holds dual meaning; as an exclamation of frustration and as a constant reminder of how they are bound together forever, and these two meanings are woven beautifully through the story.

For the Love should be required reading for anyone going into any field that involves caring for people with "different" abilities, to remind them of the beauty of the human spirit, of the capabilities and the possibilities that exist within everyone, and of the non-negotiable need for dignity and respect. The book pleads with caregivers to remember those things, to help to make changes to the system that was created to help and protect, but often serves only to confound and damage. I am grateful for the wisdom found here, the stark warning to parents just starting out on this journey, that information will not be handed to us. That nothing will be easy (think Medicaid and HIPP, folks!). That there will always be obstacles. That we have to rely on each other to find the way.

As someone who has barely had time to read a newspaper, let alone a book in recent years, I couldn’t put this one down. It made me smile, made me hold my breath in fear of what would happen next, made me angry, inspired me, made me love these two women and all that they have fought for and accomplished so far in their lives. I hope one day to meet them both, to learn from them, and celebrate the indomitable spirit they possess.

You can buy a copy from Amazon.com here. I hope you’ll all share the journey!

"Because" Part II: Scenes From the Morning Rush

Me (teetering on the edge of feeling either super-human or just generally insane after the usual morning rush to get up, feed cats, make coffee, get child up, get said child dressed/washed/fed/hair-do’ed, put dishes away, make beds, gather and put out trash and recycling - all within about 45 minutes): “Samantha, it’s time to get on the potty so we can get you to school.”
Samantha (digging her heels in and burying her elbows and her face into the couch): “I don’t want to.”

Me (looking up at Steve and suppressing the overwhelming desire to laugh out loud): “Did she really just say, ‘I don’t want to?’”

Steve nods, trying to hold back his own smile, looking amused.

Me (to Samantha, a little worried about what the answer might be): “Why not?”

Samantha: “Because…because…I don’t want to.”

Good answer, child.

Couldn’t hold the laughter back that time.

In the Valley of the Dinosaurs: Look Out, Little Girl!!!!

As promised, here are pics from Dinosaur Land, nestled in the woods in Virginia's beautiful Shenandoah Valley.  We didn't stay long because it was so freaking cold, but it was an awful lot of fun!  We followed this visit with a very rare trip to Mickey D's and Samantha's first Happy Meal.  I'm not proud of that fact.  We were hungry and it was the first thing available.  And personally, I don't see any issues when something like that is doled out in moderation.  And she drank milk with it.  Funny how we feel the need to defend that, but I guess that's just how things are these days.  Well, that and the fact that I seriously need to lose about 35 lbs. and am feeling a bit defensive anyway.  :-)

Mostly Wordless Wednesday: Hide and Seek on a Perfect Day

I had some problems uploading the photos from my SD card onto my computer yesterday, so I don't have the pics from Dinosaur Land yet.  The issue seems to have resolved itself now, this morning, so I will hopefully be able to get them a bit later on to post tomorrow.  In the meantime, here are some pics of Samantha playing hide-and-seek outside, with nothing but two skinny trees and a plastic slide to hide me.  She insisted on doing all the counting and seeking - think she knew she had the major advantage here?  Little sneak...

Because

I’m continuously just so blown away by the things Samantha is learning and coming up with. I think most of them have to do with her “typical” school and the learned behaviors she’s developing from her interactions with her typically-developing peers.

We have long worked on who, what, where, when, why questions with Samantha. She answers some of them with infrequent consistency, and some of them not at all. The most commonly answered ones are who and where, with what following closely behind. We’ve recently introduced why more regularly, knowing that it will really make her think to answer. Her stock response had either been to parrot the word “why” back to us, knowing that she didn’t quite understand what we were looking for, or to answer in an incomplete sentence (“Samantha, why do you want a wet wipe?” “Baby bath.” Or, “Samantha, why did Pinkalicious turn pink?” “Cupcakes!”). But in the last few weeks, her stock answer has changed to a much more mature one-word response. Because. And she doesn’t say it like a statement, as in, “Samantha, why did you put baby in time out?” “Because.” She says it like she’s thinking, and thinking hard. More like, “Samantha, why did you…(whatever)?” “Because…because…" She definitely likes the sound of the word. She says it with a grin, like she’s just tasted something delicious that she knows she isn’t supposed to have.  Or like the cat that caught the canary.

This morning she took her full and correct sentence building to the next level. As she “read” Goldilocks and the Three Bears while sitting on the potty (complete with super-whiny baby bear voice upon finding that his porridge had been eaten, his chair had been broken and there was some crazy blond chick in his bed), she said, “Daddy bear mad. Baby bear sad. Mamma bear angry.” I seized the opportunity to test her. “Samantha, why was Baby bear sad?” “Because…because…chair is broken!” Ahhhh, such a sweet sound, so lovely, so musical, so…right. Because. How do you explain a concept like because to a child? There is no concept – it’s just…because.

Steve is the lucky one (no, really!) who gets to drive Samantha to her “typical” school twice a week. He gets to see how she’s received into the classroom, hear the other children greet her, watch how she reacts. And I thrive on these reports. I watch my clock from my desk at work, waiting for the moment when I think he’ll have dropped her off and will call me to tell me the latest, greatest story. And to most people, these reports consist of something terribly mundane and innocuous. But to me, they’re reports containing the keys and practice runs for Sammi’s future. No pressure, right? Time and time again, I hear of the other children flocking to her, Samantha taking their hands and walking into the play areas. Steve said he’s struck by how appropriate it all seems, how appropriate she is with her peers, doing the same things as them, being embraced by them. I asked him this morning if he ever got the sense that parents may not want her to play with their children – you know, the old stereotypes, the old fears of the unknown. But he said the parents he’s met all adore Samantha, encouraging the interactions with their own children, treating her like any other.

Twice a week I wait for these reports, and while they’re always the same, I still want to hear them. Just…because.

A Brief Hiatus

So, after 35 days of blog posting, it really did feel pretty weird not to have posted a single thing for a whole 3 days.  And it isn't like I didn't have anything to say, but really, I did need a little break from, you know, thinking.  And so, a blissfully thought-less weekend ensued.  Sort of.  Action packed, and requiring very little thought, may be a better way to describe it.  And it was good.

I've now officially entered way-beyond-old-married-folk status.  Steve and I celebrated our (gasp) 19th wedding anniversary.  I used to have a hard time remembering if it was the 5th or the 6th of November, always reciting the Bonfire Night rhyme, "remember, remember the 5th? 6th? of November," and getting even more confused, but it turns out that it is not on Bonfire Night, and Bonfire Night is the 5th, so, by default, our anniversary is on the 6th.  Glad to clear that up.  I think it's kind of like how I used to not know my right from my left when I was taking horseback riding lessons back in 7th grade.  My instructor would tell me to turn left, then, upon watching me deliberately point the horse's nose to the right, would sigh, exasperated, and tell me, "No, the other left."  Not really the same at all, but it still reminds me of that innate, very difficult to remedy, confusion.

This weekend was also jam packed with other stuff.  Saturday morning, as Steve was out at work, I dressed Samantha in some fall-appropriate attire and sent her outside to play (woefully inadequately dressed in the name of fashion, hoping she wouldn't catch on and tell me how cold she was) so I could get some shots worthy of this year's holiday cards (remember Shutterfly's bloggy special to get 50 free photo cards?).  I succeeded, and have a beautiful design sitting in my Shutterfly shopping cart, just waiting for me to hit the submit button. 

I also hosted a playdate on Saturday morning consisting of 5 adults and 6 children (ranging in ages from 3 mos. to 5 years) crammed into my little house.  The party ended abruptly with a crash and the tinkly melody of breaking glass when Samantha reached for a bowl of fruit from the counter and forgot to catch it on its way down.  I have learned immense patience since she was born, not because she does many things that require it, but because I have learned that the little things (ie. the proverbial spilt milk, or broken bowl in this case) just don't matter.  Samantha was upset not because we reacted to the broken bowl, but because we reacted to a concern for her safety around the glass.  I hope she understood that.

Saturday night Steve and I got a rare night out and attended a friend's surprise birthday party at a winery out in the country, in the foothills of the Blue Ridge Mountains.  A lovely way to celebrate both her wonderful day and our anniversary.  The next morning brought yet another road trip, out to the Shenandoah Valley, to a place called Dinosaur Land.  Wow, what an interesting place!  Photos will follow soon, once I get a chance to unload my SD card.  Steve had run across it a few times while travelling out there for work, and thought it might be fun for Samantha.  We weren't there long, as it was probably the coldest day of the Fall so far (does the fact that Samantha actually asked to wear her knit hat tell you how cold it was?  You know, Samantha?  Who refuses to keep anything on her head for more than a few seconds?), but I'm certainly glad we went.  It definitely is a testament to Samantha's growth over such a short period of time as the last 6 months, that we wouldn't have thought her old enough to appreciate a place like that back then.  But we didn't even question the idea now.  Samantha knows what a dinosaur is (roughly), and has become more positively affected by each new experience (okay, so don't go running back to my post about the Pumpkin Pick in September and call me a liar, okay?).  I chalk it up to that whole new level of sentience I blogged about recently. 

I had thought that I may get a teensy, tiny little break in our weekend activities once Summer left us high and dry (and super-chilly), but it's beginning to look like the fun has only just begun.  Little Miss Popular has not one, but two birthday parties to attend next weekend.  One is for a little boy in her "typical" preschool class.  I'm pretty excited for this.  I think I won't be obsessing about this party as I have done at others in the past, comparing her abilities and activities too closely to those of typically-developing children.  I have seen so much growth in her, both physically and socially, over the past year that I feel pretty good, and more confident.  Not to mention, these are children she knows, and interacts with regularly.  The dynamic should be pretty fascinating.  I'm also looking forward to meeting some of the other parents of the children in that class.

Enough for now.  Must get this posted before I get too sidetracked and set it aside for another few days of slackerdom.

Alternate Movie Title Day: Halloween XVIII: The Thing in the Candy Bowl

Got It!!!