Tuesday, May 31, 2011

Still Catching My Breath

Just a short and sweet note today to say I'm still recovering from this whirlwind of a weekend, and am completely incapable of posting anything anyone would actually want to read today.  But let's just say that the weekend was a blast, the party went off without a hitch (complete with exactly. the. right. number of boy v. girl party favors, to a person - definitely a feat!), and Samantha, true to her spotty history of sensory overload issues, cried when it came time to sing Happy Birthday to You.  Seriously, no amount of practice seems to be enough for that kid, and we seriously practice all. year. long...  The heat was unbearable, and I think it may have been a whole lot easier to have just arranged her party to be held at a sauna.  They do kid's birthday parties, don't they? 

Other than the singing fiasco (of which I have photos...), Sammi had a wonderful time playing with her friends and eating not one, but two pieces of pizza and not one, but two cupcakes (in addition to a plateful of goldfish...).  What could be better?  Besides the new sinus infection that we suspect may be about to rear it's ugly head yet again...  That ENT appointment at the end of the month can't come soon enough.

I was sound asleep lastnight by 9:30, figuring the photos could wait another day to be edited and posted.  Wow, that 8 hours felt good. 

Oh, and if anyone's wondering, Samantha is on Day 4, I think (if not 5...I actually lost count in all the excitement) of staying dry again in the mornings (and all day).  She still makes it a point to let me know as soon as she wakes up (heard on the baby monitor *just* as I sit down to drink my coffee:  "I dry, Mommy!  Look, Mommy, my bed is dry!"). 

With Big Girl status comes Big Girl responsibility. 

Monday, May 30, 2011

5 Years Ago Today...

...our beautiful little girl, Samantha Elizabeth, was born at 5:19am, weighing in at 7 lbs. 11 oz (a very "convenient" weight, Steve likes to joke...get it? 7-11?), and measuring 19.75".  Our first, last and only child, a child we'd tried for for many years.  A perfect, crying, pink child with a lot of hair, an unusually short umbilical cord (the cause of the slowing of her heartbeat during labor), and an extra chromosome.

Poor Steve got suckered into a) standing at the wrong end of the bed with b) a pair of surgical scissors (or whatever it was that they use) in his hand and a slippery umbilical cord being thrust at him by the doctor, who said cut here.  Two things he emphatically swore he would not do, ever.  Oops.  He really wasn't in a position to say no at that point, though. 

Aside from a pesky hole in her heart (announced to us the next day by the cardiologist we have loved now for 5 years) requiring surgery at 4 months, and a mild case of jaundice, she was healthy enough to come home with us two days later.

Samantha has been the most amazing thing either of us has ever done, as well as the most amazing person either of us has ever encountered.  Down syndrome is irrelevant in this post, so I won't talk about what the extra chromosome means.  It's just a small part of who she is.

Samantha is beautiful.
Samantha is smart.
Samantha is stubborn.
Samantha is determined.
Samantha has a wicked sense of humor.
Samantha has a true heart of gold, with empathy to soothe a whole world's population of pain or sadness. 

Samantha is my best friend. 

And now that day is here, the day our baby can well and truly be called a big girl.  The changes in her this year, the growth and development that have been so obvious, are staggering.  The maturity she displays, and the sensibility, the sensitive soul she holds within her, the academic developments she's picked up along the way...I'm overwhelmed.  More than we could ever have thought would occur this year. 


Happy, happy birthday, beautiful Samantha.  We love you more than words can express.

Sunday, May 29, 2011

Memorial Day 2006

Five years ago today...

I awoke at 5:10am with a twinge.  Just a twinge, mind you, and an hour later, just another twinge.  It was Memorial Day, and like any good retail store manager worth her salt, I was on the schedule to work, although with the forethought to have doubled up with additional management, fairly certain that I would not be there through the week.  I got up from my most current comfortable sleeping arrangement on the stiff-cushioned couch in the baby's room (comfort is a relative term - as most of you know, there's no such thing as comfortable sleep when you're pregnant), took a shower, began to get dressed, stopped, picked up the phone, and called out of work, something I had never done. 

My assistant, Carlos, was only too happy to not see me that day.  His growing fear over the previous few weeks was that he'd end up witnessing the one thing that he hoped never in this lifetime to witness.  "I ain't birthin' no babies!" he'd said repeatedly in his best Prissy imitation (c'mon, you remember Gone With the Wind, don't you?).

Couldn't blame him, really.

Steve was home that day.  The twinges that had started out at every-hour-on-the-hour shifted little by little...every half an hour...every 25 minutes...every 20 minutes...  I ate very little, just in case (I'd heard the horror stories and vowed not to become one of those statistics...)  We walked.  If that's what you want to call it.  Maybe waddled is a better choice.  Steve, with his watch, notebook and pen, keeping tabs on the timing and spacing (I think I still have that notebook somewhere!).  Me, happy just to be drinking my main source of sustenance that day, a mango smoothie from the cafe down the road.  Not so happy to have to stop completely in my tracks every 10 minutes, robbed of the ability to even speak. 

I was pretty well prepared already.  Bag packed?  Check.  Cats fed with extra food and water?  Check.  Baby's room ready?  Check.  Toenails painted?  Check (this was a particularly important one after my OB shamed me for my chipped polish on one too many visit).  

Later that afternoon, my mother came over to see how I was doing.  And the three of us walked some more.  By about 5:30, it was definitely time to go.  While the hospital was only 10 minutes away, that had to be the longest car ride of my life.  After being checked out, the hospital staff was ready to send me back home until I was really ready.  Oh, I was ready, all right - I was ready to jump over that nurse's station counter and knock someone on their backside if they were actually daring to imply that I should get. back. in. that. car. and. drive. home. again.

Oh, I don't think so...  I knew that even if I made it home, I would never, ever, in a million, zillion years, have made the ride back.   

So, presumably fearing for their lives, or at least some unbruised bottoms, they let me stay, making me walk the halls until they could actually give me a room.  Not like there was anyone else there.  I was the first pregnant momma to arrive for the evening.

Oh, holy crap.  More walking?  To be asked to walk the 50 feet from the nurse's station to the baby gallery was like asking me to climb Mount Everest.  I think I may have only succeeded in scaring the bejeezus out of some young children, faces pressed to the glass, trying to get a glimpse of their new brothers or sisters in the rows of plastic bassinets.  Parents threw their arms around them, hustling them away from the scary pregnant lady that looked like she was about to die on the spot.  The kids looked suitably alarmed. 

The babies slept.

And I'd obviously succeeded at something else - they said I was ready and gave me a room.

And then I got drugs.

Perfect!  Oh, except for the ill-timed contraction just as the needle was going into my back.  Hold still the calm, patient anesthesiologist said, obviously not in excruciating pain and obviously not about to pass a child.  As a matter of fact, being a man, I'm sure he was feeling pretty darn smug about the fact that he would never be in that position.

And there I stayed, Steve and my mother helping me to pass the time through the wee hours of the night and early morning.  Hours I can't really remember, other than to worry about why one leg was more numb than the other.  And why the baby's heartbeat slowed frighteningly down every time I shifted position...

Friday, May 27, 2011

The Downs Heart Group Needs Your Help

Yesterday I received the following message from Penny Green, Founder and Director of the UK's Downs Heart Group.  I'll write more in a moment about what this group really means for parents of children with Down syndrome and congenital heart defects, but please read this first:

Hi everyone,

Please forgive this intrusion, but Down's Heart Group desperately needs *YOUR HELP*. The current economic climate means that currently our funds are very much depleted and there is a risk that if we can't pull together some fund-raising plans in time before they run out, Down's Heart Group may close before the end of the year.  Those of you that know my story or that have known me a while will know that is something I will fight to prevent, but I *CAN'T* do it *ALONE*! So I am asking *EACH*and *EVERY ONE* and of *YOU* to do what you can to help. If you value the work that we do - our website, newsletters, helpline, information, this list, Facebook group and posts etc. please *HELP US* to let them continue so that others can benefit in the future.

There are lots of ways you can help, wherever you are in the world and they don't all cost you money:

* If you can make a donation (no matter how small) there are ways to do that shown here how to donate http://www.dhg.org.uk/fundraising.aspx?donate

* In the UK you can use any of the links found at the website above to support us when you shop online (some even give you money back) shop online

* Hold a fund-raiser for us - you can use those same sites in various ways to collect sponsorship or donations online fundraising - it doesn't have to be anything big.

* Ebay - PLEASE visit eBay for Charity http://donations.ebay.co.uk/charity/charity.jsp?NPID=16557 and click on the dark blue ribbon to select Down's Heart Group as a favourite charity

*Currently we are entered into a competition where if we get enough votes we stand to win a £100 grant from eBay* Once you have DHG selected as a favourite charity, when you sell on eBay , you can choose to donate a % of your sale to us, or when you buy you can add a small donation by rounding up your payment.

* ASK friends and family to do something too, share this email - whatever you can think of.

Whatever You can do to HELP US, will really be appreciated! *THANK YOU*

Penny Green
Director, Down's Heart Group

Email: penny@dhg.org.uk
Tel :0844 288 4800
Fax : 0844 288 4808
Skype: penny.green- dhg

Web: http://www.dhg.org.uk/

(Okay, it's back to me now)...Hopefully you or someone you know can help.  This group was a tremendous source of support and information when Samantha was born and we found ourselves facing the daunting and terrifying world of heart defects and open heart surgery.  Through the listserve alone, I was able to do some one-stop-shopping, if you will, to find others who had gone through the same thing who could offer some really invaluable advice.  The website's main function is to provide non-medical people in the UK and in other countries good information about the heart conditions so common in people with Ds, in the form of publications written with the layperson in mind.  I know that there are other resources out there, and the rise of Facebook has been a big one.  But to a new mother of a child with a diagnosis of Ds, I was overwhelmed and excited to find a tailor-made group to answer my questions.

Additionally, Penny, who many of you may know already from Facebook, has worked tirelessly to raise awareness for this, and for all causes relating to Ds.  She has spearheaded trips to Nigeria to help provide information and resources to the families of children with Down syndrome there, supporting their DSA. 
This woman does good work

And the group is in trouble, and facing extinction. 

Please share this, and pass this message along.  Visit the website, read their newsletters, click on their resource links.  Don't let the Downs Heart Group disappear!  E-mail Penny directly with any questions about the organization, the financial crisis, whatever

Thank you!

Thursday, May 26, 2011

Turnabout is Fair Play

...unable to find adequate words for how I feel about these two photos...

amazement...pride...joy...contentment...love... just 5 picked from the beautiful jumble swirling in my thoughts...

Wednesday, May 25, 2011

Wordless Wednesday: Just Chillin'

Sorry for the words...I like to hear myself think.  :-)

Watching tv before bed.  I love how she just sprawls out and lounges, like a typical teenager.  I've seen her lay like this while talking on the phone, too, getting in some early practice.

Tuesday, May 24, 2011


Samantha has always had so much empathy.  I've heard this mentioned a lot about people with Down syndrome.  She seems to really feel, deep down inside her, when someone else is sad or hurt.  So much so that for the last few years her gauge of whether or not everything is copacetic is to ask, "Are you happy?"  It's almost heartbreaking, because I worry that if she's asking, she may sense that something is less than perfect.  Usually she asks when everything is just fine, but she still wants (needs) to be sure.

I had previously blogged about her delicate ability to sense another's emotions here  and also here.  Below are just a few additional and more recent examples (although there are hundreds more):

Sammi has a little friend at school with cerebral palsy, who she just adores.  She mentions him all the time, and when I've seen them together, she just dotes on him, hugging him and kissing him, looking out for him.  It's not like he can jump out of his wheelchair to run and play with her, but there's something about her need to care for someone that draws her to him, I think.  He is also quite smitten with her, according to his mother.  She senses the weakness in others and is likewise very gentle with babies and animals.  Not like I'm comparing her friend with babies or animals, but those examples seemed to fit best here...

As I was putting her to bed the other night, I mentioned to her that my neck really hurt.  I had slept funny the previous night, and was really stiff, with pain every time I turned my head.  She gently touched my shoulder and said something to the effect of "Dr. Sammi make it better."  The next morning when she woke up, one of the first things she did was ask if my neck was better.  I nearly laughed!  My headaches, stubbed toes and other bumps, bruises and maladies (yes, I'm a klutz) all get the same sweet treatment.  Dr. Sammi, indeed!

Sunday afternoon, while I was trying to show something to her, she kept pushing my hand away and whining that she wanted me to stop and that she didn't want to look at the proffered toy.  I knew she was a bit sleepy, but we've been trying to teach her that she still needs to listen and not to whine.  I told her firmly that I wasn't going to play with her if she was going to be cranky.  We went on to something else.  A few minutes later, I randomly asked her for a hug (trust me, you can never ask for that too much - they're totally worth it!).  Her response was to launch herself into my arms, squeezing me tightly, saying, "Mommy, I'm sorry I cranky." 

Nearly broke my heart. 

That acknowledgement of her poor behavior made me question whether or not I'd overreacted in the first place.  I know I shouldn't second-guess myself, because I know I gave her some constructive stuff to think about, and I know I didn't actually overreact, I just stated my piece very simply.  I guess I just didn't expect her comprehension to be as complete as it was.  That'll teach me to underestimate this kid...  And believe me, she was good as gold after that.

Her sensitive and empathic nature must be where her obsession of doctors comes from.  It just comes naturally.  Granted, she has never really had a bad experience with any doctors (well, not including the ever-awful strep tests and not any others that she can remember, anyway, given that open heart surgery has to be pretty traumatic).  I don't know what career Sammi will have when she's older, and while I know that she can't be a doctor (oh, how I hate to use that word, "can't"), I suspect she could easily have a job as some sort of medical assistant or a caregiver.  She's not even 5 yet (Ack!  Less than a week away!!), but I can already say that the world would be a much better place with more people like her in it.

For anyone that still doesn't believe it, trust me, that extra chromosome is a beautiful thing.

Monday, May 23, 2011

Taking Her Job Seriously

Well, the tables turned, and Samantha, on Morning 8, needed to have her sheets changed.  I know that the process of staying dry at night isn't a perfect one, and that there will be bumps in the road.  While disappointed, I am staying encouraged and positive, and know that there's always tomorrow.  Every morning I can't wait to go into her room to see if she's still dry.  Not sure if this is annoying to her yet or not, but I think she's still been thoroughly enjoying the accolades (until today, of course, but I just kept it light for her).  I really don't know what changed - it was literally overnight.  We hadn't really been working on it actively or anything, but it's like something just switched on and she decided that if she's going to be a big girl, she has to do it fully and completely (even with the little bumps).  Yep, there's always tomorrow...

Saturday was quite a busy day, starting off with a few hours at the local DSA's annual spring picnic.  It was an absolutely beautiful day, and Samantha, while sleepy, had a good time.  Can't go wrong with a bouncy castle, a playground, a petting zoo, hot dogs, and lots and lots of mud.  Yep, turn your back for a second, and she'll find the closest puddle to walk through in her new white sneakers that I'm not sure I can clean...  But that's what childhood is all about, right?  I actually am looking for opportunities for her to "jump up and down in muddy puddles" a la her tv hero, Peppa Pig (if you've never watched it, I recommend it...funny for parents, too!).  Every time it rains, it all dries up too quickly to give her the opportunity to put her pink rubber Hello Kitty boots on and go hog wild.

Flying right off-focus here...about those pink boots...  Does anyone else find rain boots highly impractical?  Maybe it's just me, but when I put them on her, they practically fall right off of her again if she even shakes her foot.  Sometimes she even walks out of them.  I didn't think they were too big, but the lack of constrictive structure makes them kind of a challenge.  And then, if you're sending your kid to school, do you just not use the rain boots?  I mean, when they get to school, do they just leave the boots on all day, or do you have to send another pair of shoes with them and hope everything makes it home in their backpack at the end of the day?  I know it's trivial, but it's one of those mysteries of young-child-parenting that I haven't yet figured out.

Anyway, after a little nap (afforementioned in my last post) during which I ran a few birthday party errands (yes, I broke down and bought a hot glue gun at AC Moore - might not use it for crafts for this party, but if I'm eventually going to be able to compete in the leagues of those inspirational, crafty, glue-gun-weilding, sewing-machine-toting, party-planning mommies, it's a heck of a lot cheaper and lighter than said sewing machine), "we" washed the car.

Rather Daddy, a consummate perfectionist, washed and detailed the car (and it's now absolutely beautiful, inside and out!!).  Sadly, this is not the car I drive to work every day.  Oh well.  Samantha was a fantastic helper, while I snapped photos and made sure she didn't venture out of our parking space and into the road.

As you can see, she took her job very seriously.  She's already much better at car-washing than I will ever be... 

Yes, yes, I know, she's still in a pull-up, even though she's been dry for ages during the day.  Told you I'm a chicken...

Saturday, May 21, 2011

Sweet, Sweet Saturday: Oh, Those Eyes!

Because I can't contain myself anymore, I have to first brag that we're now on Day 6 of waking up dry!  She's taking this responsibility pretty darn seriously, I think.

Two pictures from last weekend, for no particular reason, other than a bit of self-indulgence.  It might actually be because she's taking a nap right now (I know we've mostly eliminated her naps, but today she was just super-tired) and I can't look into her beautiful eyes myself without waking her up rather rudely.  I'm looking forward to her waking, though, so we can all wash the car - it's a GREAT day to play outside with the hose and a big bucketful of soapy water.

Amazing, even with a mouth full of goldfish.

Thursday, May 19, 2011

Playing the Big Girl Card Part II (or The Power of a High Five)

(Quick note again to remind you all to vote again for Samantha today for the Parents Magazine weekly contest - at the end of the time period, the 10 weekly winners will vie for a cover shot! This morning it appears she has dropped from 37 to 39... It only takes a few seconds to click the link, click the "vote" button and type in the word recognition, then voila! You can vote once daily per IP address, which means that if you access multiple computers, including your cell phone, you can vote from each. Here's the link: http://photos.parents.com/category/vote/photo/863057/46 Thanks!!!)

I hesitate to write this post, as I’m sure I’ll jinx everything. Do you ever do that? Not say something for fear of “jinxing?” Not to go too far off topic, but I often worry that “jinxing” falls under the superstition category, which I believe has its roots firmly planted in a sea of OCD. Yep, I think that anything that becomes part of a ritual of any sort (like not doing something due to an irrational fear based on…nothing), is a sort of obsessive-compulsive behavior.

Oh well, I’m sure we all have it in us in some quantity…

Anyway, what was I saying? Oh yes, I hesitate to write this post because I’m afraid that if I do, I’ll be wrong and it’ll not happen anymore (tap my desk 3 times touch my nose move my pen to the left side of my keyboard…whew, that was close!).

But Samantha has woken up dry in the morning for the last 4 days (I actually wrote this post yesterday, when she was at 3 days, and was so excited to modify it to 4 this morning!).

We have been keeping her in a pull-up at her private school during the day because she naps there, and she always wakes wet from her naps. We keep her in underwear for her public school (except this week since she’s on an antibiotic, which can cause, uh, accidents). I’m too chicken to keep her in underwear at home, but I’ll tell you, that girl can seriously hold her water.

The issue has never been of her being able to use the toilet – as a matter of fact, she’s incredibly efficient, and has used it in some capacity since she was about 18 months old. Hop on, make sure her skirt/dress/long top/hair are bundled up so as not to get wet, do her bizness, pull just the right amount of toilet paper off the roll to wipe, hop off, fix her clothes, wash hands. She’s really good at it! The issue has been whether or not she’d tell us she actually has to go. Did I mention she can hold her water? Yeah, until she can’t hold it any more. Then it’s too late.

But she hasn’t had an accident or a wet pull-up during the day in weeks (the last time being a relatively isolated incident with her new aide who wasn’t being forceful enough in making sure Sammi made a trip to the potty), and actually woke from her nap on Tuesday at school dry, telling the teacher she had to use the potty and going on her own.

Showing your pride in your children’s accomplishments and teaching them to feel proud of themselves is key, I think. We have never underplayed any of her accomplishments, encouraging her to do things on her own because they’re the right things to do. I had written before about playing the Big Girl card, and that is very much at play here. She is proud of being a big girl. She wants to do big girl things and feel that pride.

When I went into her room in the last few mornings to get her up for school, one of the first things I’ve asked is, “Are you dry?” And her response has been an enthusiastic, “Yes, I’m dry, Mommy.” And when I put her on the potty a few minutes later, she gets the speech about how proud I am of her, and we seal the deal with a high five.  This morning (Day 4) she also said, "See, I told you no pee pee in the pull-up!"  She's working so hard at this.

Never underestimate the power of a high five, by the way.

Wednesday, May 18, 2011

Chasing the Crafty DIY Birthday Party

(Quick note to remind you all to vote again for Samantha today for the Parents Magazine weekly contest - at the end of the time period, the 10 weekly winners will vie for a cover shot!  As of today she's at #41!  It only takes a few seconds to click the link, click the "vote" button and type in the word recognition, then voila!  You can vote once daily per IP address, which means that if you access multiple computers, including your cell phone, you can vote from each.  Here's the link: http://photos.parents.com/category/vote/photo/863057/46 Thanks!!!)

So I'm not in the least bit creative, am a HUGE procrastinator, and tend to opt for the quickest shortcuts when trying to exert my creativity to make something new.  This often results in sub-standard crafts that fall apart and look shabby.  Kind of like someone took a shortcut...  However, reading so many blogs where people showcase their own brilliance in birthday-party-planning, as shoved in my face by their drool-inducing photographs of the events (oh, seriously, if I see one more beautiful, hand-made cloth banner from colorful, sewn cloth strips, I'm going to have to get a sewing machine of my own to sit in my closet, gathering the dust of ages of disuse) , I am once again feeling the urge to create.  Samantha's party is in 2 weeks.  Am I ready?  Not really, but I'm getting closer...

The theme this year is Olivia.  Parents of little girls know exactly who this is.  If you don't, click here.  I love Olivia, the smart, precocious little pig with a wild imagination.  Many of you know that Samantha is/was pretty much obsessed with Olivia, although that obsession seems to have lessened this year as Peppa Pig has grown in dominance (sense a pig thing here?).  However, even if I am a little bit late to the game with this, she still will appreciate the theme, and I think it's pretty darn cute myself.  :-)

I started my "planning" (I use this term very lightly) a few weeks ago, and have begun to obtain lots of red and white to decorate our little corner of the playground for her party.  I wishwishwish we could have had her party at home this year, but our back yard and our basement seriously just aren't there yet, not fit for use by humans.  Maybe one day.  But since her birthday is on May 30th, the weather is usually pretty darn beautiful, and a playground is the perfect location where the children can play and enjoy themselves, then scarf down pizza and cake (the pizza part has proven to be a bit of a challenge every year, as the delivery guys swear up and down that they won't deliver to a park - I insist otherwise, and they eventually bend to my will).

I discovered that unless you plan even further in advance (see?  That sneaky word plan rears its ugly head again...) and order from a website, you cannot get Olivia decorations or party supplies, so DIY it is.  I kind of didn't want to go the commercial route anyway, again inspired by those beautiful blog posts of the super-moms.  We'll see.  My budget is, like, $0, so I'm hitting up Michael's and Target, possibly Walmart soon (read:  the night before the party).  Red and white are good, popular colors this time of year, as we enter into Fourth of July season, so my options are pretty endless.  I'm actually having fun with this, and if I manage to pull it off, I'll certainly take the time to pat myself on the back.

...that is if all of my decorations don't disintegrate before the guests arrive...

Maybe I should ask the guests to bring their own gluesticks.


Tuesday, May 17, 2011

Votes? Not Sure What They Mean, But I'll Take 'Em!!

Last week I entered four of Samantha's photos into the Parents Magazine Cover Model contest.  Now, to be perfectly honest, I rarely view these contests as anything more than excuses for people to post pics (good and otherwise) of their kids.  I dislike intensely the notion that I have to go and solicit votes from people.  Popularity contests just aren't my thing, and asking for stuff always makes me uncomfortable.  I receive daily requests to vote for children in this and that, and while they're all worthy, and I certainly do vote for the ones I know or am familiar with, I let the others pass me by.  I don't have a problem with receiving the requests, as long as the requesters don't have a problem with me ignoring them.  The Parents thingy always seems to be the same sort of event.

However, I received an e-mail yesterday stating that one of my photos had been selected to be in the running for the weekly popularity-contest-prize of $250, and that the winners of each of the 10 weekly contests would be the ones to go on to vie for selection as the cover model of an upcoming issue of Parents.  Now how could I refuse?  Of course, I'm pretty certain that there were at least about 1,000 other photos that were "selected" for this same honor.  I'm not really sure how to tell how many there were.  I shared the link on Facebook, and gathered some votes, and this morning I see that my photo of my darling, chromosomally-enhanced child is #79.  Depending on how many others there are, this could be a pretty amazing number.  I guess I have to think about just how many other entries there have been to this contest, and when I think that Parents is a HUGE magazine and their website is incredibly popular, there had to have been an awful lot.  So 79 is probably a pretty massive honor, and not something to be taken lightly. 

So, with that, I humbly request that you click on the link below and vote, vote, vote for my girl!!  You can vote daily this week (not sure when it ends, but I think it's the 23rd), multiple times if you're using different computers...LOL 

How amazing would it be to have a child sporting an extra chromosome as the weekly winner or, gasp, even the cover model!!! 

Click here: http://photos.parents.com/category/vote/photo/863057/46 to vote, and feel free to share on Facebook to get this child to #1!!

Thank you!!!!!!!!

Monday, May 16, 2011

Kindy Sneak Peek

Oy. Samantha grabbed the laptop the other day and hit Publish on this post when it was not anywhere near complete. If any of you saw it flash up in Networked Blogs or on other people's blog rolls, my apologies...

At our IEP meeting a few weeks ago, it was suggested that, due to Samantha's issues transitioning into new environments, we bring her over to her home school a few times before the end of the year to meet the office staff, the principals, and the two Kindergarten teachers. The hope is that if she feels comfortable enough with them and the new scenery (seriously, the scenery is hardly new, considering every single elementary school in the area has exactly. the. same. layout as her current school), the transition to the new class will be at least a little bit less traumatic.

Obviously, at the IEP meeting, only her current teachers/therapists/Vice Principal actually knew Samantha. The Kindergarten teacher from the home school (we won't know until much later which of the two Kindy teachers she'll actually have next year), as well as their Vice Principal and Special Education teacher, had never met Samantha, but got to hear everyone speak very highly of her. But through blogs and Facebook and all of the other Down syndrome resources out there, I have heard time and time again of schools and teachers who are considerably less than enthusiastic to have a child with Ds in their midst, for any number of reasons. The families immediately feel that the welcome wagon had passed them by, and that there was no red carpet to greet them. Worse, they often feel that their child may be neglected or left behind in the classes, or made to not feel a part of the class.

While the home school members of the IEP team never once seemed to be hesitant about Samantha's imminent entrance into Kindergarten there, I couldn't help remembering all of those stories. I was expecting them to be giving us the plastic smiles while inside thinking, crap, crap, crap. I knew that the visit would be very telling.

When Samantha got home from school on Friday afternoon, Steve walked over to the home school with her, taking them up on their offer, ready to let Samantha loose on the unsuspecting staff. Unsuspecting because we know she can pretty much charm the pants off just about anyone.

And she did.


They spent about 25 minutes there, visiting the office, visiting both Kindy classrooms, and got more oohs and ahhhhs than her rapidly-swelling ego can handle. Teachers from surrounding classes opened their doors to see who was causing such a stir. Samantha got a severe case of the sillies, though, and took a few too many liberties, allowing Steve a rare opportunity to show them how to deal with her to rein her in to focus and listen.

Speaking of which, the lesson of the week has been "Listen." Ever since we eliminated her afternoon naps, Samantha has gotten a little unfocused and obstinate on a slightly more frequent basis. Getting her to stop, look you in the eye, and hear you explain why it's so important to listen to daddy, mommy,teachers, M., etc. generally works pretty well. She wants to be a good girl, a big girl, and tries so hard to correct things when she starts to act up. It's really pretty amazing. Magical, actually.

All very important lessons for this rising Kindergartner. Ahhhh, I still can't say that word without feeling that little bit of panic and a whole lot of pride.

Wednesday, May 11, 2011

How Could It Get Any Better...

...than this???

I look at these photos and am still in shock and awe that this child will be turning 5 in less than three weeks.  FIVE.  F-I-V-E! 

Happy and sad, all rolled up into one...happy because my little girl is growing up to be such a wonderful young lady, sad because my little girl is not so little anymore. 

I can't imagine what my posts are going to be like on her birthday and when she starts Kindergarten in a few months!  I think there may be a fair amount of stream-of-consciousness ramblings on both occasions.  So many thoughts crowding my brain, all jostling for the next opportunity to jump out onto my keyboard and into my posts. 

By the way, I was thrilled on Saturday to actually get a lot of real smiles from her in my photos.  She's learned, when you ask her to smile, to say "cheese" in the most insincere way possible, looking more like a crocodile enjoying his lunch than a happy child.  Like she's trying to appease me so I'll get the damn camera out of her face.  And when she does it, she tries to make my picture-taking life as difficult as possible by looking away from the camera at the same time.  Yeah, thanks.  However, I have, in turn, learned that if I am not getting the shots I want and I ask her for a happy face, she'll give me a true, happy-little-girl smile.  Yeah!  Thanks!! 

But in these shots, she was not doing it because I wanted her to.  She was smiling just. because. she. was. happy

Tuesday, May 10, 2011

Williams Syndrome Awareness Week

About 4 1/2 years ago, when Samantha was a baby, a man that worked for me in my old retail life revealed that his young, school-aged daughter, had Williams syndrome.  I had never heard of it, and my only experience with chromosomes was in learning about Down syndrome.  I was so green in this new world surrounding me that I didn't think to ask him more about it.  I had never yet heard the letters I-E-P used together, and was just learning P-T, O-T and S-T.  It was pretty overwhelming already, and learning about some other syndrome that couldn't possibly have such huge ramifications for the parents and the child as Down syndrome did for me, was just a waste of time.  My issues were far greater, and he couldn't understand.  So I asked a few cursory and polite general questions, learned that she had some delays, and moved on with my work days.

The fact is, while it is much more rare than Ds (about 1 in 10,000 babies born has Williams syndrome and 1 in 691 has Down syndrome), there are quite a few similarities.  There are some physical markers (harder to detect in infants), developmental delays in speech and fine and gross motor, learning delays, heart conditions and other traits.  Williams syndrome is the deletion of genetic material from chromosome 7.  Down syndrome is the addition of an extra chromosome 21.

I have recently begun reading the blogs of two parents of children with Williams syndrome, Adventures With Baby J and Bean and I Have the Missing Link and have learned so much more.  Because there are so few markers present at birth to raise red flags, diagnosis often comes very late for children with Ws.  Because the condition is relatively rare, there is so much less information and support out there for families with children with Ws.  With this week being Williams Syndrome Awareness Week, I hope many more people will seek to learn more, and to open their arms in support of these families.

I wish I had taken more time to learn about the daughter of that guy I worked with, but I was so new with my own daughter's diagnosis that I was a bit overwhelmed.  I hope he and his family received the supports we have available to us, and that his daughter is able to thrive in a world that is only just beginning to embrace the differences in people, but that still has a long, long way to go.

Monday, May 9, 2011

Spring Lambs (& Goats, Alligators, Zebras & Big Shaggy Things...)

My friend, Crystle, also one of the volunteer photographers for the 2012 DSANV calendar, invited me along to one of the shoots on Saturday morning.  Heck, it was at the local zoo and with a mother, father and 14-month old boy that I've been wanting to meet, so the stars aligned and off we went. 

My girl has no fear.  Feeding the sheep like an old pro, hand outstretched and proffering pellets of something-sheep-and-goats-like-to-eat-but-looks-like-rabbit-poo, she showed she has the touch.  The touch of a compassionate soul, and of one who nurtures.  That's Samantha, through and through.

The day was absolutely gorgeous, with crystal-blue skies and a soft breeze. I had actually forgotten how amazing it is to visit animals at this time of year, too, when the babies are taking their first breaths, drinking their first gulps of milk, and seeing the sun for the first time. At Crystle's request, the zoo staff had agreed to provide some baby goats for the little boy (and Samantha, of course!) to be photographed with. 

Yes, my girl has the touch.  This little kid's name is Irene.  And, get this, she was 2 days old.  I felt really honored to be in the presence of such a trusting and delicate little creature, allowed to watch two such trusting and delicate little creatures interact with each other.  Samantha is so gentle, and just knows.

I'm pretty sure she would have wanted to go in and give the alligators just such a gentle, delicate welcoming, but I was sure to put the brakes on that by telling her that alligators eat little girls.  Was that wrong?  A little bit of healthy fear can't hurt, right?

I'm not sure if any of you have ever had the opportunity to take a tractor-pulled wagon ride out into the middle of a tundra to meet some pretty shady characters up-close and personal or not, but having done it before, I knew to sit in the center row of seats, leaving the outer seating to my unsuspecting friends, one of whom is not much of an animal person.  She took it all in good-natured stride, though, especially since the ostriches and the huge beast with the 3-foot horns (not pictured here, but in this blog post from last year) happend to visit the other side of the wagon, fortunately.

A perfect spring day.  *sigh*

Sunday, May 8, 2011

Being a Mother

When I was younger, through my teenage years, I swore up and down that I would never bear a child.  That must have started just after learning how babies made their entrance into the world, and my lasting thoughts were "no way, no how!"  I stated that if I decided I wanted a child, adoption would be the way to go.  Let someone else go through that...

That feeling eventually shifted.  I remember clearly when it did.  Sounds strange, but it was the spring of my Sophomore year at college.  I recall sitting in my English lit class, struggling to stay focused as I drew flowers all over the margins of my notebook in my purple ball-point pen (I loved that pen).  I felt it a little odd that I was doing something so random, so different from the geometric shapes I usually found myself doodling.  On a whim, I looked it up (uh, somewhere, it couldn't have been online, though, since the internet didn't exist yet!) and discovered that it was a sign of fertility.  Interesting, considering it seemed that my thoughts had been shifting as well, and I didn't quite care how a baby arrived, only that I wanted one. 

It wasn't until 18 years later that I eventually conceived and gave birth to what I know is the most special gift I could ever have been given.  A daughter.  And not just any daughter - the most beautiful, bright, fun, sweet, shining star that ever fell to earth.  And she was perfect, extra 21st chromosome and all. 

This post isn't about Down syndrome, it's about motherhood.  Samantha's birth and addition to our family was the perfect culmination of everything I knew I was meant to do in my life.  Everything I do is for her.  A friend of mine who had a baby before me always said that once a child is born, it's not about you anymore.  Truer words were never spoken.  I never thought it would be, and I would certainly hope that would be the case for mothers everywhere (those mothers who don't feel that way honestly shouldn't have children).  I could say so much more here, like how being a mother has taught me to love completely unconditionally, but I'll leave it at that, and keep it short and sweet for now.

My mother brought me up right.  While she was very young when she had me, she had the values and the instinctual know-how to be a GREAT mother.  I know you won't read this post today or probably for a few more weeks Mom (she's travelling without internet access through Europe), but when you do, know that I'm thinking of you today and want to wish you a very Happy Mother's Day!! 

And Happy Mother's Day to all mothers out there.  We have done some pretty spectacular things, and deserve to have a day just for us!

Friday, May 6, 2011

The Power of Compromise

The Kindergarten transition IEP meetings are now officially over.  Two sessions totalling 3 hours finally summed it all up in a manner that was mutually agreeable to all parties.  I have already posted about the first meeting, so I won't rehash it here, but needless to say, I did not burst into tears this time.  On the contrary, this last meeting, held on Wednesday afternoon, was almost festive


The royal wedding played a big part in the discussion at the beginning, while technical difficulties with the computer's IEP program were ironed out.  Even the people with whom we butted heads last time (notably Sammi's PT) were particularly nice, quite possibly owing to the fact that I had sent cards and small gifts to the teachers and therapists for Teacher Appreciation Week in Sammi's backpack that morning...  (Note to self:  remember this for next year...

Eh, can't hurt to butter them up, right?

We knew it wouldn't be a difficult discussion.  We had already pretty much decided on most of the details and just had to plead our case for ESY (summer school).  There's this weird thing where if no agreement can be made at the IEP sitting, it reverts back to the previous year's version, meaning classroom instruction, PT, Speech and OT (which was added as a recommendation by the therapist this year) for ESY.  Which was cool.  But we really didn't want to get it via default - we wanted them to agree, too.  And once we said we did not want Speech or PT and only wanted OT and classroom for her 3 days a week during the 5-week ESY session, and once her OT piped in that due to Sammi's issues with groups and transitions it would be pretty crucial to keep her in the school environment as much as possible prior to Kindergarten (YES!  This is what we've been saying for so long!!), everyone agreed, and the deal was signed.  Compromise, compromise, compromise.  Shoot high, scale back to where you actually want it to go and let them think they came to the decision on their own... (okay, if any of you school folks are reading this, which I don't think you are, just know that what we came up with is truly in Sammi's best interest.  We're not being arbitrary here...

Easy peasy.

I don't know if I had mentioned before how much we love her OT.  She has seriously been in our (well, Sammi's) corner 100% the whole way.  All through the year she's been the only person who has communicated with us consistently, putting entries in Sammi's notebook to inform us of exactly what they worked on each week.  She has also worked hard to create fun activities for Samantha, involving things that Samantha is interested in.  You could sense her sadness in one note she sent home accompanying a large, spiral-bound book of letter-building activities that she had been working on with Sammi all year.  Sad because it meant so much to her, and it was hard for her to pass it along to us.  I wrote her a heart-felt thank you note in return.  She has also been the one to champion our ideas in the last two IEP meetings, and has stated that while she is not necessarily the therapist-on-duty this summer for whatever summer school Samantha will be attending, she wants to be the one to do her OT herself, and will work with us to find the best times/locations in which to do the sessions outside of the classroom.   

So this is how Kindy's going to look:

*AM session 5 days per week, with a 1:1 aide for as long as is necessary (Sammi proved to us this year that once she became familiar and comfortable with the people and the routines in the classroom, she could do it on her own), to be re-assessed quarterly, or as-needed.

*An extra hour of resource time after the AM session, to review the lessons and reinforce what was learned in class that day.

*An extra 1/2 hour two days a week after the resource time for therapies.

And no transportation, as the school is about 100 yards from the house.  I'm actually quite looking forward to being able to walk her to school next year!  I so rarely get to have a glimpse into the classroom or school environment, and I think having those few moments to talk to her teacher or watch Sammi's interactions with the children will be invaluable.

All is done for another year.  Kindergarten starts in a mere 4 months.  Samantha turns 5 in a scant 3 weeks.  Mommy is adding new grey hairs by the handful (skillfully covered by that box of dye I treasure...), and the sun rises and sets right on schedule. 

It's all good.

Thursday, May 5, 2011

Someone's Gettin' Played...

Samantha's new aide, M., speaks barely a lick of English.  And while that can certainly pose some problems (trust me, it does), it should have absolutely. no. bearing. on common sense when it comes to caring for a child.

Unless that child happens to be Samantha.

My girl has this uncanny way of bending people to her will, exercising her right to use Jedi mind tricks on those unwary, unsuspecting Suckers (yes, with a capital S).  Mommy is occasionally on the receiving end.  Currently it's M.  And man, she's got it bad.  

Now, tell me, in a world of logic and common sense, WHEN is it OKAY to let a child draw all over their arms and clothes with magic marker?  Can you answer that?  Huh?

Right.  Didn't think so.  

When questioned about it, M. (through signs and gestures and those few words of English that she does know) explained that Samantha started doing it, then began to cry when M. tried to stop her, so she stopped trying.  Really?  That's all it took?  She seriously just sat back and watched as Samantha created her latest masterpiece in red, all. over. her. jeans. 

Today I'm feeling very grateful for washable markers.

What if that had been the couch?

Let's just say Samantha got a stern talking-to when Daddy got home...

I did a check-for-understanding when I came home lastnight:  "Samantha, where do you use markers?"  "On paper, mommy."  Good.

And this hasn't been the only incident, either.  Apparently, little Miss Manipulative has been telling M. that she'll go use the potty if she can have a cookie. 

Ohhhhhh, some things are just soooooo not negotiable.  Nice try, kiddo.  We're on to you now...

Wednesday, May 4, 2011

A Match? Yes! A Match!

There is truly nothing quite like a memory matching game – so very simple, yet you can almost watch it shaping young minds as they test and stretch their cognitive skills. Traditionally it was played with a deck of cards, but has morphed over time into a myriad of visually-enticing, brain-twisting options. SO many options! I remember as a child absolutely loving my Memory game. I have a strong memory (no pun intended) of sitting on the floor in our basement TV room, playing it with my parents. However, my memory is not sharp enough to recall what the images on the little square cards were.

Because the game can be introduced to a child as young as three years old, and because it can be appealing to people of almost any age, it can easily be found and adapted. We have several. My boss, not one to indulge in gift-giving, but who has a daughter the same age as Samantha, gave Sammi this Chelona Memo Fantasy game, made in Germany. It consists of several wooden boards, printed on each side with images of nature (one has bugs, one has flowers, another with butterflies, and yet another with ladybugs) and a few paper templates with which to make your own (by adhering stickers, photos, etc.). They are set over four dowels to keep them in place. Little wooden snails are set on top of each image, covering them from view, and each player, in turn, removes two at a time. If they reveal two matching images, the snails stay off and remain in that person’s possession. The person with the most snails at the end wins. It is beautifully crafted, and fits my fantasy of what toys we would have exclusively for Samantha as she grew up – wooden, educational, throwbacks to a simpler time. A fantasy I had before she was born, and which dissolved into an impossible dream almost instantly, the moment Ernie and Bert reared their ugly heads, followed quickly by Dora and the Disney Princesses.

Speaking of whom…the next game is the Kai-lan memory match game. We also have the Disney Princess version. And seriously, these games are hard!! How many little square cards can you have with pictures that are almost exactly like the others? They’re like finding a needle in a haystack. Not like games should always be easy, but they should at least be playable without dissolution into frustration by both parent and child.  Maybe it's just me...?  Needless to say, these boxes don’t come out all that often (don’t let that torn corner fool you…).

My parents gave Sammi Tea Party Smarty, another memory match game, by Hallmark. I love this one. Cards big enough to actually see, pictures bright and individual enough to discern the differences at a glance (none of that is-Cinderella’s-hair-in-a-ponytail-or-in-a-sweeping-updo? stuff…), with images of items found at a tea party (duh). 50 cards can be a bit daunting at first, but are easily pared down for smaller games.

(I love how hard she's concentrating here...)

You really can make a match game out of just about anything, the more creative, the better.  Do you have any favorites?

I particularly love the version where my girl sorts her own lovely, rainbow-hued socks fresh out of the dryer. ;-)

A match?

Yes, baby, it’s a match.

Monday, May 2, 2011

The Yard Picnic

We knew ahead of time that we were in for a perfectly beautiful Saturday.  After Thursday morning's tornado scares, leaving us hunkered down in our basement watching the blip of the radar move across the tv screen (showing the unsettled weather passing a mere mile to our west), we felt that we deserved a beautiful day or two.  Really. 
So I asked the young, blond-haired, blue-eyed decision-maker of the family what she thought of having a picnic on Saturday.  Like I didn't already know the answer...  Steve had already committed to yardwork, making an early-morning run to Home Depot for mulch, flowers, and the oh-so-necessary ant and termite termination spray.  I know what he's like - he'll skip anything resembling breakfast and get so engrossed in his job at hand that he forgets to eat all day.  I knew that a lunchtime picnic would benefit us all.  Sammi helped me plan the menu (uh...the predictable peanut butter and jelly sandwiches, of course, supplemented by ham and cheese, veggie straws, broccoli salad and the likely-to-be-left-uneaten-by-the-anti-vegetable-princess carrot and celery sticks) and at 1pm we trooped out to the brightest spot in the front yard to pitch our blanket and soak in the fresh air and sunshine.

Samantha is wearing one of Steve's mother's beautiful creations, sent last week from England.

Sliced strawberries and grapes in honey and lemon juice.  I've got to have the weirdest kid on the planet, who won't. eat. strawberries.  I'm assuming it's because they're pretty hit-or-miss in the sweetness department, depending on the time of year and the crop location.  I guess she's been burned too many times with the sour ones that she figures it's better just to not to chance it.  Grapes, on the other hand, are not an issue.

But my, oh my, don't they look delicious??

See that building in the background?  That's the school Sammi will be attending starting next fall.  I seriously don't think it could be any more convenient.  :-)