Friday, March 30, 2012

Meriah's Run for Cancer

I'm taking a brief hiatus from my running travelogue today to help a friend help others.

My friend Meriah has issued a plea, one that I am more than happy to pass along.  Several months ago, she pledged to run a half-marathon to raise money for the Leukemia and Lymphomia Society in honor of a little boy named Oliver and other children like him, who are fighting for their lives with cancer.  I'm not nearly as eloquent as Meriah, and am pasting here an e-mail she sent me the other day.  I hope you will all be able to help!  Please share this post, or hers, to help get the word out.


I'm running a half marathon on May 6 up on Humboldt County for the Leukemia and Lymphoma Society.

I know that you didn't ask me to do this. That the impetus for deciding to do it is mine, all mine. That others shouldn't have to feel that they *need* to donate to this cause, because, after all, it's a cause that I chose, not you, right?

Only it's not really.

Because you know someone that has died of cancer - and if you don't, then I can guarantee you that in your life span, you will. Chances are high that it will be someone you love. It might even be yourself.

Cancer is everywhere. We don't know how it gets started, we don't know how to make it go away for good. We won't know these things either, unless and until we step up with the research and unfortunately, researchers neither work for free nor does the government provide adequate funds in this area.

I'm hosting as big a giveaway in appreciation for donations as I possibly can right now on my blog:

There are a lot of prizes but most of all, I know you'd just feel good in knowing that you gave to a cause that is doing a whole lot of good. It's tax deductible. You can send me a check if you prefer. You can donate online: .

While big dollars are vastly appreciated, I know that's not in everyone's reach - and every $5, $10, $20, $50 counts towards the $1,400 that I need to raise, is used responsibly in helping to find cures and better treatments for leukemia, lymphoma, Hodgkin’s disease and myeloma
Please give. Whatever you can. If you have given already, I would deeply appreciate it if you would help to spread word, share this message.

Do it for yourself, your children. Your own family. Your friends. The people in your life that stand a huge chance of contracting some type of cancer. Do it for all of us.

Thank you.


Thursday, March 29, 2012

Day 4, Part II: Adventures With Beth (and a much more successful blogger meet-up!)

Samantha and I departed Seattle and headed slightly north-ish to join Cindy, Beth, Chuck and Diana for lunch at a diner in their town.  I was so excited to meet them, and hoped Samantha could continue to live her donut-fueled congeniality until the eventual ride back to Diane and Per's house (and preferably beyond...). 

Not too long after Samantha was born, and I discovered blogs as a source of information and support, I craved a look into the future, constantly searching for the ones about the older children and adults with Down syndrome.  I needed that, but it was very, very difficult to find.  I mean, my baby was only little and most of the blogs were certainly about people who were older than Samantha, but I needed to see the glimpse beyond that, beyond the 2 and 3 year olds. 

Those blogs are still few and far between (I may have to do a post one day soon with a list of such blogs that I've come across so far, for those of you who are interested), but about 2 years ago (has it been that long?) I discovered Adventures With Beth, and have loved following along ever since.  Beth's mother, Cindy, chronicles their everyday life, the joys and frustrations, the fun and beautiful things their family does together, and how ordinary their lives are.  I had needed to know that the center of my universe would no longer be Down syndrome, and that I would soon experience that ordinariness myself. 

And when I realized that we would be spending time in their neck of the woods, Cindy was the first person I told, thrilled at the prospect that we might get to meet IRL (again, that's in real life for those of you not in-the-know...).  And we totally made it happen. 

I know I have been using the term warm to describe the people we'd been meeting on our trip, but seriously, without consulting a thesaurus, that's totally, exactly what adjective describes this family, without a doubt.  Warm, friendly, so, so easy to talk to, genuine.  Beth was very quiet, matched only by Samantha, who retreated into her little shell until a peanut butter and jelly sandwich and potato chips were presented to her by the waitress.  Chuck, Cindy and I shared stories of adventures, Diana spoke about her recent trip to England, Sammi stuck her nose into her PB&J, Beth enjoyed her omlette, and I practically inhaled the delicious potato pancake with apple sauce that I'd ordered, something I had never before seen on a menu (if anyone can recommend somewhere locally I can find these, please let me know!  I'll be a friend for life!).  Beth brought Samantha a Dr. Seuss book which Sammi initially refused, but which became her favorite for the rest of our trip, reading it over and over and over again, in the car, on the airplane, at name it.

I'm sad that our visit was so brief, but hopefully next time we're out that way, we'll be able to get together for a longer period of time.

Oh, how I loooooove this photo...

Loooooove this one, too, and looooooove this family!!

Wednesday, March 28, 2012

Trekking West: Day 4, Part I: Pit Stop in Seattle

Oh, there was just so much more I wanted to say in the last post! You know how you write quickly just to get something out, then you realize how much you'd forgotten and how lame and kind of empty the post felt? I wanted to say how amazing Samantha was, what an incredible little spirit she has to be able to seamlessly assimilate into a whole new environment, to meet so many new people and to work the room flawlessly. How exciting it was to meet Steve's brother and sister-in-law.  How Sammi greeted her Uncle John and Auntie Cynthia with big hugs, reciprocated in kind by these two kind, gentle "new" members of the family. Without even giving Cynthia a chance to take her coat off, Samantha had engaged her in an enthusiastic game of hide-and-seek. 

Something kind of amazing to us is that Cynthia is a special education teacher. Really? Wow!! We also learned from Diane that Steve's birth father had been an active volunteer in his community, working with people with disabilities, Down syndrome in particular. Here we are with those ever-present connections in the places we least expect them! I love how that happens.

Now on to Day 4...

Surprise, surprise, Day 4 brought more rain.  The flat, grey sky pretty much opened up and peed on us all day.  Umbrella-less, like any good tourist in the Pacific Northwest, I was grateful for my thin, open-knit hoodie under my coat, which was oh-so-useless against the constant onslought.  Better than nothing, I thought to myself. 

Steve, Diane and Per went their own way to meet up with John and Cynthia at a local casino, while Samantha and I drove northwards for the afternoon, promising to meet up again with everyone for dinner that evening.  And where would Sammi and I be going on our own?  Why, to meet up with our blog friends, Cindy and Beth, of course! 

Excited for our lunch rendezvous, we headed out extra-early.  I thought we'd make a short stop in Seattle, a city we'd never before visited, for a quick walk around Pike Place Market, in hopes of capturing some action shots of the famous fish flinging.  We parked in a lot just below the Market.  Now I say "just," but in all reality, it was a 58-step walk up.  Samantha and I counted the steps as we ascended, me urging her to walk faster as I felt my hair turn into a soggy orange cotton ball below my hood.  Amazingly, she laughed the whole way up, completely unfazed by the monumentous task she'd just undertaken. 

The laughter was short-lived.

One could argue that this was no child of mine, this little girl who bristles at the site of shops, or merchants or any other type of store, stall or table.  She did what she does best when not playing up to her endearing public. 

She pouted.

See that lip?

My angelic, petulant one dug in those heels, crossed her arms, and cried bitterly at the thought of having to walk around looking at merchandise beautifully hand-crafted, flowers flawlessly displayed, fish artfully arranged, their eyes wide, mouths gaping.  I'm normally a little squeamish about the latter, but for Samantha's sake, for the sheer hope of child-entertainment, I tried to get her interested, all in vain.  There were no fish being flung, unfortunately, as there was no one actually purchasing any fish while we were there (and don't think I wasn't tempted, just for the sake of a photo-op...).  Not like I thought Samantha would have enjoyed that one little bit anyway.  And, in a bold, lightening-fast move, I stopped the child from sitting down in protest in a river of fish juice streaming from the ice-filled cases out to the rainy street.

fa la la la la la

After a bit of futile strong-arming, I realized that she was actually just hungry, and we'd missed her snack time.  We left the market and walked across the street to a lively, colorful, artsy little coffee shop.  One of those shops you assume must be a dime a dozen in a city like this.  And it probably is.  But we liked it.  And Sammi loved the donut holes.  I indulged in a London Fog - Earl Grey tea in steamed milk with a shot of vanilla.  I added my own finishing touch, a few thick drops of honey, and we were set.

Nuh uh, you can't have it...

20 minutes later, we headed back across the street and into the market, where, tempted by just about every table we passed and cognizant of just how little time those donut holes may have bought me, I quickly found a cute thank-you gift for my next door neighbors who went above beyond to take care of our high-maintenance kitties while we were away.

And poof, my time was up.

Back down the 58 steps, in the rain, to the car, and we headed out of the City towards our next destination.

Next stop:  Day 4, Part II:  Adventures With Beth (and a more successful blogger meet-up)!

Tuesday, March 27, 2012

Trekking West: Days 2 & 3

Dang that place was beautiful, despite unpredictable, intermittent rain showers and low cloud cover.  Day 2 brought us a break in the clouds long enough to catch a glimpse of the Olympic Mountains beyond the Sound. 

During the times we couldn't see the actual mountains, it was easy to pretend the clouds were the mountains, as they were positioned perfectly in front of them.  This area really looks a lot like England.

Diane and Per are an amazing, warm couple.  We all agreed that we'd felt as if we'd known each other for years, and not a day or so.  Diane had known that Steve existed, as she had known his mother many years ago, but Steve did not discover her until this past summer when family tree searches led him fortuitously in her direction. 

Samantha and Cousin Diane, bonding, playing doctor.

There was a lot of this on Day 2 - Steve going through his pages, adding information passed along to him by Diane, and making mental notes of the stories being recounted.  She was very close to her uncle, Steve's birth father, and she was able to shed much light on who he was.  Time very productively spent.

On Day 3, Saturday, we woke up to snow.  Yep, that's right.  After sitting outside of our house at 6am, waiting for a taxi in 61 degree weather two days before, we now viewed a heavy, wet snowfall that did nothing more than to frizz up carefully flat-ironed hair.  And yes, I'm that vain.

Steve, Samantha and I took the opportunity to give our gracious hosts a bit of a break and to meet up with my Facebook friend, Shannon and her gorgeous children, Ruby and Grady.  I still chuckle (okay, can I add that to the list of words I hate?  I use it only because it describes exactly what I did...) when I think that if Steve had chosen not to come with us that morning, Per had planned to follow me and Samantha discreetly, just to make sure we were safe when meeting a stranger.  How sweet!!  That tells you a little bit about the kind of guy he is. 

We had a great time at breakfast with them, meeting up at the Black Bear Diner and coming away with some new human friends and a cuddly stuffed black bear, appropriately named, "Bear."  I love meeting my "friends" in real life!  Shannon was so sweet, and Ruby was a knock-out.  Grady, the most charming infant ever, slept through most of the meal.  I have to apologize sincerely for the awful quality of the photos - two active little girls in a dark room do not make for clear images...

Later that afternoon we were joined by Steve's brother, John, and his wife, Cynthia, and we had a wonderfully English dinner of steak and kidney pie and chips (french fries to my fellow Americans), followed by strawberry-rhubarb tarts and custard.  Oddly enough, I was the only one in the house with an American accent (well, besides Samantha, but the jury's still out on hers) - Diane and John both retained their English regional dialects, Cynthia is Canadian, and Per, despite spending the last 40-ish years in the US still has a very strong Norwegian accent. 


I'd love to write more about those first two days, but in the interest of actually posting something during this personally difficult week (more on that when the time feels appropriate), I'll leave you here.  The next installment is Day 4:  Seattle and A Successful Bloggy Meet-Up.

Thursday, March 22, 2012

Trekking West: Day 1

The initial intention was a darned good one, if I must say so myself.  Even if Steve would have begged to disagree with me from the get-go.  I mean, what could be better than a long journey across the country, a 3-hour layover at LAX, and a meet-up with two of my favorite bloggers for lunch, two people I consider friends in this vast blogosphere, and their beautiful children I'd actually pay to give a squeeze and a smooch to (yikes, that actually sounded kinda creepy...).  We all made plans, including some research on my part that uncovered, much to my relief, the fact that the security line wait at that particular gate was, on average, no more than 2-3 minutes. 

And for those of you wondering, yes, I may actually have been born yesterday. 

Heather, at the last minute, was unable to make it.  Lacey, Jax and Arina were there.  Right on the other side of the security gate.  Just out of reach when we made the awful, awful discovery that the security line was about a mile long.  And, after the long runway-taxi back to the gate and the even longer shuttle ride from our arrival terminal to the terminal of our meet-up and next departure, we had only just over an hour left until we'd need to board our next flight.  And there was no way we'd be able to go through security, meet our friends, and make it back through on time. 

Talk about guilt.  I felt so, so, so bad.  And so, so, so sad.  Just out of reach.  I'm so sorry, Lacey!!!

What is it they say about the best laid plans?

So onward we went.  And Samantha, being the expert and seasoned world traveller that she is, was awesome.  I can't even tell you what we did on either leg of the journey, but she somehow managed to entertain herself without more than an hour nap on the plane.  She knew the rules of flying, knew exactly what to do. 

A little bit of a quick background about this'll recall me mentioning before that Steve had been searching for a half-brother, from a birth-father he never knew.  He'd eventually traced him to Thailand, and then discovered that another half-brother resided in British Columbia, Canada.  His research also revealed a cousin near Seattle.  I won't get into detail about how the family came to become scattered across the globe, but numerous phone calls and e-mails, beginning last August, resulted in plans for a meet-up between Steve, the English/Canadian brother and his wife, and their cousin and her husband.

So much to think about, so much to prepare for!  Here we were, going to stay for a week with two people we had never met (cousin Diane and her husband, Per) on the other side of the country, about to meet a long-lost brother we didn't know existed...what if nobody clicked?  What if everyone was uncomfortable?  What if...what if...? 

Eh, what if. 

"If" didn't happen.

Everything went perfectly

After landing in cold, rainy Seattle, we were warmly welcomed with open arms and tears by Diane and Per when they met us at the car rental so we could follow them home.  Samantha actually launched herself into Per's arms, running from the shuttle bus into the building to greet him, yelling, "Per!  Per!"  I swear, that child has a way of ensuring people fall in love with her instantly.

An evening of getting-to-know-you, coupled with the slow and steady expansion of the family tree and stories of a history Steve had never before been privy to, was followed by an early departure to bed for all.

Next up, Days 2 and 3.

Wednesday, March 21, 2012

Happy WDSD, Short And Sweet Style


We've been away for nearly a week, travelling the Pacific Northwest and visiting family.  I'll detail that trip over the next several days, but since today is 3/21, World Down Syndrome Day (3 copies of the 21st chromosome - 3/21 - if any of you non-Ds-related friends were wondering), I should certainly focus on that first and foremost.  However, we arrived back home last night at the frightening hour of 1am, I've kept Samantha off school today (it would be horribly unfair to all parties involved to have her attend class and therapy on 5 hours of sleep), and I'm about to get ready to go into work late, so I'll have to keep it short and sweet. 

Down syndrome has changed our lives in an astronomically huge, unvelievably complicated, beautifully enriching, perfectly perfect way.  Down syndrome has brought us, among so many other things, knowledge, acceptance, advocacy, friendship, heartbreak, beauty, patience, love, and happiness.

We have a child, one more amazing than any other we could ever possibly imagine, and for that we are eternally grateful.  World Down Syndrome Day helps us to spread awareness, to celebrate and share everything she has brought us, everything each and every person with Down syndrome has brought to the world. 

So, in keeping with short and sweet (yikes, I have to get ready for work!), some sunshine from my sunshine to you.

Happy World Down Syndrome Day!!!

(pics from August, 2010)

Wednesday, March 14, 2012

Tomorrow, in Sammi's Words (and Pictures)

Samantha drew an airplane today at school. However, in the words of her teacher, Do not give this child a pencil with an eraser on it.  Got that?  Good.  I'd like to preserve her beautiful art, not look at the furry smudges of what's left after her finishing touches

"I am gon to veset my ugkl don."

Translation:  "I am going to visit my uncle John."
(Sammi's teacher thought Sammi had said "Don" and was sounding out a "d" instead of a "j" so Sammi wrote "d")

And that's just where we're going tomorrow, along with a couple of quick pit stops to visit some very special friends along the way, but more about that next week when we return.

Tuesday, March 13, 2012

We Heart the Heart Doc

After Samantha's AV canal repair at CHOP when she was 4 months old, we saw her local cardiologist, Dr. H., with great frequency.  Dr. H. is the one who visited us in the hospital after Samantha was born, the bearer of bad news on top of bad news already received.  But his manner was soft, confident, comforting.  His assurances that accompanied his message were met with hope, the dread, while not disappearing in any way, lessening with each word out of his mouth.

We are now at a point where the visits to Dr. H. only occur every 2 years, a bittersweet number, as the infrequency means that Sammi's repair was excellent and her follow-up care merely a way to be sure nothing has changed, and the infrequency also means that we don't get to see him as often.  After 2 years since her last appointment, he still makes sure a pot of coffee is on, 2 sugars and some milk in a cup, waiting to be hand-delivered in-person to my always-astonished husband in the lobby upon our arrival.  One day, a few years back, we'd arrived a few minutes early for our appointment, interrupting pizza for lunch between him and his office staff, relaxing in the waiting room.  We were invited to join them.  While amused, we politely declined.

Samantha loves Dr. H.  Even 24 months since her last appointments, new fears and hesitations accompanying her maturing brain, he put her right at ease, involving her in each step he took, from taking weight and measurements... listening to her heart... taking her blood pressure... doing the all-important (and potentially fear-inducing) echocardiogram.

The results were as changes.  Minor mitral valve regurgitation (a slight murmur), nothing to ever be concerned about, nothing that would ever stand in her way of any activity she wants to be involved in. 

It's always a relief.

Monday, March 12, 2012

The Ones That Know Her


It's funny how a simple afternoon trip to the playground can stir so many emotions.  Funnier, I guess, that I could be so annoyed at a 6 (?) year old.  I mean, really, I'm a grown woman, why would something a random 6-year old girl said really need to bother me?

Sunday was the quintessentially perfect spring day.  30-something degrees at dawn, progressing upwards to about 65 or 70 by 4pm.  Cloudless blue skies, warm sun, light breeze.  Perfect

We walked over to the school playground at about 2pm, and saw several other children that we did not know playing on the climbers.  Samantha, considerably more hesitant on them than others her age, would begin to climb up something, then call, "help!  help!" even though she was really just playing around for effect, and didn't actually need help.  But the other children didn't know that.  A 6 or 7-year old girl offered to help by showing Samantha how to do certain things.  Samantha responded to her in her own way, and the girl would look quizically at me and say things like, "Why does she shout when she's talking?" (my response:  "She's just talking.") or "Huh?  What does 'shah' mean?"  (my response:  "She said 'sure.'").  It's kinda hard not to get snarky with a 1st grader.

And it really kinda got to me. 

I know, I know, grow some thicker skin, lighten up, pull up my big girl panties, it's not a big deal...

I know.

But Sammi's lip started to quiver, and I suspected she may have been a bit more aware of things than she let on.  I'm not sure, though, as Sammi has never shown that she's understood or been affected by the subtle nuances of conversation by other children, has never understood the sideways looks or avoidance of other children who don't want to play with a "baby", or who don't want to be hugged by some little girl trying to throw her arms around them.  I asked her if she wanted to go play on the other playground nearby, which has swings, and she did. 

Some more random children on the other playground, doing their own things, not really an issue (although I did get a little bit irritable with one little boy who, impatiently waiting behind Samantha for his turn on the jungle gym, said, "Does she even know how to do the jungle gym?"  I responded, "No, but she's got to try in order to learn."  The boy's father jumped in and reminded the boy that it took him about a hundred tries before he was able to do it - I love the parents around here!).  But they soon cleared out and we were alone. 

For a few minutes. 

Then..."Hi, Sammi!" 

Merciful joy, exquisite timing, a wonderfully familiar face.

A child from Sammi's class, a little girl about a head taller and 6 months older, with her grandmother.  The difference in her presence was staggering.  She wanted to play with Samantha.  She understood what Samantha was saying.  She didn't patronize her, and actually enjoyed their interaction.

And you know what?

She couldn't propel herself on the swings, either.

And she was scared to go down the slide on her tummy, something Samantha's been able to do forever

And they had fun

This really, really reinforces our reasons for wanting to keep Samantha in her home school, wanting her to move along with her typical peers.  They like her.  They protect her.  They encourage her.  They understand her.  And they live in the neighborhood.
The ones that know her are like night and day contrasted against the ones that don't. 

And that, friends, is the support system I'm so happy has been put in place, the ball I am so happy has begun to roll. 

The next step will be to turn those others into Ones That Know Her, too. 

Friday, March 9, 2012

The Versatile Blogger

So, I've been sitting on this post for a few weeks now, mainly because of the 3rd rule of the acceptance of this lovely award (see below).  But more on that in a moment.  First, I'd like to thank CJ at Don't Lick the Ferrets for being so kind as to have included me in this - I'm honored!  I don't really know what versatile means in the context of blogging, but I suspect it has something to do with stories and photos of my daughter and discussions about Down syndrome and how it affects (or doesn't affect) our lives, interspersed with sprinklings of rambly tangents, pictures of food, or YouTube episodes of favorite cartoons.  I suspect that versatile can be interchanged with random here.  And that's a very good thing!  I like to think I can keep you guessing. 

Here are the rules:
1.) Add the Versatile Award graphic on your blog post. 
2.) Thank the Blogger who nominated you. 
3.) Share seven random things about yourself.
4.) Nominate fifteen fellow bloggers.
5.) Inform bloggers of their nomination.

Rule #1?  Check (see above, in case you weren't paying attention and skipped down to see if I manage to humiliate myself with #3).  I've left this image untouched by the code alterations that make my pics uncopyable - just do a regular click on it, which will open it in another browser where you'll be able to right-click, copy, paste.

Rule #2?  Check (again, stop skipping ahead!  See above...).

Rule #3?  Ah, now here's where it gets tricky...  I can't actually think of 7 random things to say about myself. In general, I find it hard to say much about myself that could actually be interesting to anyone, as opposed to sending them off into a deep slumber before they get to the bottom of the list. I mean, what do I tell you that you probably don't already know?  And trust me, chances are the stuff you don't already know is stuff I'd rather that you never know...

But...(taking a deep breath here) goes:

          1.  I once wrote a Black Stallion novelette when I was 12.  I accidentally left it on the stairs where my parents found it and read it, and when they gushed about how good it was, I was so horrified that anyone had read it that I promptly disposed of it.  I actually regret this, but do recall that pre-teens can be pretty touchy about their stuff.

          2.  I refused to learn German while I lived in Germany, other than the few, simple phrases that could get me things like brotchen or a Baccardi kirsch (yes, I could buy alcohol in the nightclubs at 15), or help me find a bathroom, because I was taking French in school at the time and didn't want to get confused.  Guilt prompted me to then take 2 years of German once I'd returned to the US the following year.  Damn self-centered Americans...

          3.  There are a few words that I absolutely abhor (seemed a nicer way to say hate), including scrumptious, moist, belly, and ointment (btw, on a side note that did not influence my list, I found this cool website,  I've always disliked those.  There are others, but I can't think of them right now because I've managed to effectively remove them from my mind and my vocabulary.  Uh, except belly.  No mother of a child under age 10 can totally successfully avoid that one, no matter how hard we try or how much anguish it causes us...

          4.  I love Bluegrass music.  While I don't actually own any, I am mesmerized when I happen upon it on the radio (all hail WAMU's new Bluegrass/Americana station!  which doesn't actually come in where I live) or when I stumble across a Bluegrass band at a festival or other event.

          5.  I used to own pet rats.  They're amazing pets, kind of like little dogs, but unfortunately get tumors very easily.  I sent one of them, my first and favorite, in for surgery to have a particularly large tumor removed.  Sadly, regardless of whether or not they have the tumors, rats don't live very long, only about 2-3 years.

          6.  My favorite food is cereal.  Any time, any place, any kind.  I eat it frequently for dinner.

          7.  I...oh wait...I can't tell that one.  Nevermind.

There.  That wasn't too bad, was it? 

Hello?  Helloooooo?

Rule #4?  I now hereby nominate some bloggers for this award.  I'd love for you to all pass it forward, but promise not to be offended if you don't.  This choice was pretty hard.  I read and follow a lot of blogs.  So many that I can't keep half of them straight most of the time.  But I had to narrow this list down to 10, those who I feel best fit the "versatile" label.  This list is in no particular order.
          1.  With a Little Moxie (Meriah)
          2.  Big Blueberry Eyes (Michelle)
          3.  Everything and Nothing from Essex (Deanna)
          4.  From the Heart (Anna)
          5.  I Don't Know What to Say  (Lisa)
          6.  Me and My Boys (Jen)
          7.  My Stubborn Little Miss (Megan)
          8.  One Beautiful Life (Krista)
          9.  The Garden of My Heart (Melissa)
         10. The House that Jade Built (Annie)

Rule #5?  Give me some time on this one.  Perhaps another 2 weeks?  I'm working on it.  And like I said, if these people don't pass it forward, that's okay.  I'd love to hear some random stuff about them, and I was happy to point out those blogs that I find to be versatile.  Makes for good reading.  :-)

Thanks for playing along and not snoring too loudly!

Wednesday, March 7, 2012

Ending the Word

Today is 3/7, the day to Spread the Word to End the Word. 

And what would that word be, you may be asking? 



More commonly known in this circle as the "r-word," because it actually hurts to say it.  And in honesty, it actually hurt to type it, and hurts to read it, too. 

And for those of you out there who may be reading who may not have a connection to the world of people with intellectual disabilities, this doesn't just mean the intentional use of the word directed at a specific person.  This also means the common, everyday usage becoming more and more a part of peoples' standard vernacular, in which the word is used to describe an idea, or an activity, or a group of people, or even oneself in the context of humor, or distaste. 

And you know what?  That Hurts, Too.  It hurts people with intellectual disabilities and their families, demeans them, perpetuates a stereotype and says it's okay to laugh at them, to make fun of them, to consider them not worthy of RESPECT.  

How wonderful it would be if that were the new R-Word (deserving of capitalization now)...Respect. 




My daughter has Down syndrome. 

And she is beautiful.

And honored.

And valued.

She is worthy.

Please...take the pledge today at, pledge to stop using that word.  Pledge to help educate those that do.  Pledge to help make the world a better place for people like Samantha. 

Wordless Wednesday: Tickling the Ivories

Tuesday, March 6, 2012

More Alike Than Different

The moment threatened to pass me by...fumbling frantically with my cell phone, punching in the password with impatient fingers, getting it wrong, punching it in again, getting it wrong again...finally, success!...then...waiting anxiously as the camera app took its own sweet time to load, watching the girls draw closer and closer to the school entrance where they'd ultimately turn the corner and be gone from view, the shot lost... 

Got it!

The two little girls, one in Sammi's class, one in the other Kindergarten class next door, saw us coming up the walk, and made it a point to come toward us, to join us, to hug Samantha and take her hand, to turn around and walk like that all the way to class.  To say I thought my heart would just burst then and there is an understatement.

It was a fluke, really, that I even had my cell phone on me at all that morning.  Not wanting to be burdened over the 100 yard trudge to the schoolyard, not expecting any 7:30am phone calls, there's just never any point to carrying it.  As we were walking out the door, however, Samantha spied it sitting on the lamp table in the hall and asked me to bring it so I could take her picture.  Another rare occurrence, and one you can bet I'm not likely to pass up.

While March is not Down Syndrome Awareness Month (that would be October), March 21st (3/21, as in three copies of the 21st chromosome) is Down Syndrome Awareness Day, and the message I would like people to start thinking about is epitomized so perfectly in this photo...

More Alike Than Different

Simple, right? 

It is, actually.  But getting others, who are not in our esteemed circle of extra chromosomes, to realize that, too, is a bit more of a challenge, and one that I passively seek out (is that possible?) each and every day.  Passively, meaning I have Sammi out and about doing very ordinary things all the time.  I behave no differently towards her than I would towards any other child.  I wear my pride and my love and my joy on my sleeve for all to see.  Yet I am acutely aware of the impact we may be making in the minds of those people who may not have a connection to the Ds world, who may not know what our children are capable of, who may not have seen the light outside of dated stereotypes and misinformation, yet who may remember this, and may think differently of Down syndrome as a result.

It's a tall order, yet it takes absolutely no effort on our parts.  How much simpler could it be? 

Love your children.  Enjoy your children.  Let them sneak those beautiful almond eyes and tender hearts into the souls of everyone around them, let everyone see how much more alike they are than different

(Necklace by Annie Reid at the House That Jade Built)

Monday, March 5, 2012

And The Award Goes To...

Today seems like as good a day as any to dole out a couple of awards from the weekend. 

First, the Happiest Birthday Girl Award goes to Miss Ellie, in whose presence we were honored to be for her very, very first birthday ever!

Best Sporting of a Hat Befitting the Daughters of a Particular Duchess of York Award
(with such elegance and grace, Ellie played the birthday girl so beautifully!)

Happiest Cupcake-Eating Award

Best Blue Beauty Spot Award

Best Premature Blossoms on a Perfect Spring Day Award

Saddest, Most Tired, Overwhelmed Girl Award  Believe it or not, these photos actually came first in the chronology of events.  Samantha fell asleep in the car on the way to the party, not 5 minutes after we left our house.

She woke up when we arrived, and was not happy.  Actually, it took the better part of an hour to warm her up to all things festive, but thankfully once she was warm, she was warm!!  She had a ball, thanks in part to the little lovelies in the photo below...

Most Beautiful Cake Pops I've Ever Seen Award (okay, so I've never had a cake pop before, but dang, these were awesome!  Megan, fess up, 'k?  These had crack in them, right?)

Most Post-Cake Chilliciousness Award

Thursday, March 1, 2012

Elements Combined

Sentence writing.  Now why on earth did I never really think about this as being an important part of Kindergarten?  Or school in general, for that matter.  And not only did I not think of it as being something that would be learned this year, I did not think of all of the little pieces that go into it.

Just like we, as parents, marvel at the way we get to see how mobility, speech and self-feeding get broken into each detailed component as our extra-special children learn them, we also need to relish the itty bitty, yet still huge, parts of writing.  Fine motor, sure, but then you've got comprehension and the conscious decision to actually write something meaningful (well, meaningful to a 5 year old certainly leaves a bit to be desired), and spelling.  Sammi's butterfly was her version of the teacher's, seen above it, and the words below were written as the teacher said them carefully, enunciating the letters but not actually saying what the letters should be.

A butterfly for my sweet butterfly...

I drl (draw) a prte (pretty) butrfli (butterfly). 

The sentences below were copied off the board.

The cat got the bird. 
The girl sits in the tree.