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.

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 matuing brain, he put her right at ease, involving her in each step he took, from taking weight and measurements...

...to listening to her heart...

...to taking her blood pressure...

...to doing the all-important (and potentially fear-inducing) echocardiogram.

The results were as expected...no 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.

The Ones That Know Her

(notmypicture)

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. 

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)...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, http://www.wordsihate.org/).  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!

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? 

Retard.  

Retarded.

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. 

Beautiful.

Honorable.

Valued.

My daughter has Down syndrome. 

And she is beautiful.

And honored.

And valued.

She is worthy.

Please...take the pledge today at www.r-word.org, 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

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)