The Absence of Down Syndrome

Down syndrome is.  It. just. is.  It's tangible, unchangeable, real.  It is our reality and the reality of our children and loved ones, and no matter how much we may rue some of the aspects of Down syndrome, we celebrate and embrace so many others. 

I've read, both on the Down syndrome Babycenter message boards and on other people's blogs in the last few weeks, people questioning when.  When will they be "okay" with Down syndrome?  When will it stop being the first thing they see when they look at their children?  When will their children be "normal" and more like their typically-developing peers? 

I reiterate...Down syndrome is.  At first, in the beginning, I think I can safely say, pretty much all of us live and breathe it.  It's what we see when we look at our new children.  It's the first thing we think of in the morning, the fear of the future creating a large, iron ball like a huge fist in our stomachs, the last thing we think of at night, set to punctuate our dreams with uneasiness.  And the time in between?  Sadness.  I spent many a bottle feeding crying in my rocking chair, baby blissfully unaware.

I thought I saw Down syndrome everywhere.  It was present in the person whose back and shoulders I saw turning a corner, in the new babies I saw being pushed in strollers by their mothers, in the background extras on a television show.  Who knows, maybe I did!  But, more likely, I probably didn't. 

With time...TIME...the reality took more of a back seat.  Oh, Down syndrome was still there, but did I see it everywhere? 

No. 

My brain, once again, became crowded with everyday banality, the trivialities of this, that and the other thing that come up to occupy the space.  The day in and day out of being a mother, of working a full-time job, of being me. 

6 years into this adventure Down syndrome still is.  It. just. is.  I'm involved in my local DSA, I read blogs, am friends on Facebook with countless others whose lives have been touched by it...

But when I look at my daughter, I no longer see it. 

I see a precocious 6-year old girl, one that has a brilliant sense of humor, is smart, sweet, stubborn, silly, and has a smile that can light up the world.  Do I sugar-coat our lives on my blog?  Eh, that depends.  Because I don't. see. it.  My blog usually details some of the ho-hum, regular, every day things that we do.  These things do not center themselves around Down syndrome.  Am I shouting about how proud I am that she's hit a particular milestone?  Am I frustrated on occasion about something she can't do, or about a challenge we've had with something that is as a result of one of the aspects of Down syndrome?  Sure.  Because Down syndrome is still there.  My photos and stories are of my little girl enjoying her life, learning new things, having new experiences.  If that means that I'm sugar coating stuff, ignoring Down syndrome, so be it.  Why should I show the dust bunnies under the bed, the unkempt hair, the burnt toast?  That's not what it's about. 

And so, in the absence of Down syndrome from the surface of our day-to-day existence, while it still lives there, we move on.  We live our lives.  We do what we have to do to keep things running at the necessary pace.  We do what we want to do to enjoy ourselves and be productive.  We wake up, we go about our days, we go to sleep, we start it all over again.  We do not, any longer, live and breathe Down syndrome.

It's there because it is.  We are who we are because we can be.    

Sprinkler Fun

Maybe it's just me, but it really wouldn't be summer without getting to play in a sprinkler in the yard.  When I was growing up it was the best way to beat the summer heat, and it became a bit of a social event when the neighborhood kids would join in.  It's like there was a neon sign hanging over the house:  Sprinkler = ON

On Sunday we went to Home Depot specifically to get a new sprinkler.  Oh, and I was reminded that sprinklers are traditionally, at least, for watering grass.  Or something like that.  But for us, the owners of a very, very green yard (it's the weeds that are green, not grass, and weeds grow too fast for us to want to encourage them by regular watering), a sprinkler is just a toy.  This particular one was pretty cool, though, with multiple settings for different sprays.  We found one that was agreeable to the Princess, and let her loose.

Here's a little bit of photo overload for ya... 

The skirt and the shoes eventually had to come off.

Hopscotch

The last day of school was all a bit much for Samantha.  I was grateful that there was no "graduation" ceremony or anything else I'd feel crappy about having crying-child pictures from.  There was just a class party.  Parties, as I have discovered over the years, just aren't Sammi's thing.  I mean, take a perfectly safe, familiar classroom, a room in which she spends every single weekday, an environment that is pretty much the same, day in and day out.  Then add a bunch of grown ups, crumple it up, shake it until pulverized, gargle it and then spit it out, and that's kind of what it must've felt like to her. 

She'd been having an ordinary day to begin with.  But then, around 9:30, some parents started to arrive.  Including us.  She took one look at us, then burst into tears.  I think she knew what was coming.  Complete discombobulation.  The kid actually refused ice cream.  With sprinkles on top.  That doesn't happen.  Finally, after enough was enough, we took her outside to the blacktop playground that's accessible from a door in the classroom.

And that was all she needed. 

Actually, all the kids and parents came outside within a couple of minutes, and I think they were all pretty relieved to be out there, but none so much as my baby girl.  And, being that it was probably the most beautiful day of the year so far, who could blame them?  Sammi was in her element.   

So, as I so often do, I'm going back to talk about one of those things Sammi is able to do, quite well, actually, that we had absolutely no idea she could do.  One of those rites of passage that every little girlie girl worth her salt must be able to do.

Hopscotch. 

She joined her classmates on the hopscotch form, and, unlike my last experience seeing her do hopscotch, about a year ago, she was amazing.  Switching from two feet to one foot, alternating that one foot from an occasional right (her weakest side, funny being that she's a "righty") to an occasional left flawlessly, my jaw dropped.  Apparently even the PT had been susprised to see her do that recently.  Building her core strength has been a battle, especially given that we've been concerned about staircase safety for the last 3 years.  But finally, she was ready to go.  Finally, we've given her free reign of the stairs.  Finally she's proven to us what she can do and surprised the heck out of me. 

It was beautiful.

Summer school starts today, for the next 5 weeks.  She's in a fully-inclusive 1st grade-going-into-2nd grade class (there is no inclusive Kindergarten-going-into-1st-grade summer school), and nobody felt she should be in a special education summer school setting (nothing against it, but we felt she needed the challenge and preparation for 1st grade that this setting would give her).  She'll have one of her beloved resource teachers accompanying her every day, as she will be again in September.  So I'm not worried about her being in an unfamiliar classroom (although it's in her home school) with unfamiliar children - the consistency of having Mrs. D with her will probably help her settle right in. 

We are thankful for the opportunity. 

Update:  Gotta update the summer school situation later, but let's just say it's nothing like what I just posted above.  We are. not. happy.  :-(  Blah.

What Makes Me Happy...

It's obvious some of the things that make me happy, like, for instance, my family, our health, stuff like that.  But there are plenty of other random, little things that make me happy, too.  Those little things that I take for granted, but still enjoy, still smile about, those little things that put me at peace.

In absolutely no particular order whatsoever...

• Hot water in the bathroom sink at work (there's nothing worse than sitting in ice-cold air conditioning all day then having to wash your hands in ice-cold water)

• Samantha launching herself, airborne, into my arms when I arrive home from work every day  (this one actually gets a bit dangerous, as I usually have not had time to set my stuff down or even to crouch down, thus conking her in the head with bag/sunglasses/keys/umbrella - nothing worse than a good intention ending in tears...)

• Warm sunshine and low humidity (this one's a package deal...must. go. together..., especially when in conjunction with open windows and light breezes, LOL)

• Earl Grey tea (maybe one day I'll tell you the story of moving to London, living in near-poverty, re-using old Earl Grey tea bags...yeesh...I don't think I've told anyone about that - too embarassed...)

• Ice cream (absolutely any flavor.  Love it all.  Oh, except candied bacon or gorgonzola flavors.  Those are just weird.) 

• Getting to drink my coffee all. by. myself. in the morning while Steve and Samantha are still sleeping upstairs (this is a very rare pleasure, as Princess usually wakes up before I do most days)

• Getting to use classic mom-isms (take this morning, for example:  I'm in the shower, Samantha comes into the bathroom, turns off the fan and the light, and starts to leave.  I fling open the curtain, glare at her, and say, in my most menacing-mommy voice, "Don't *make* me come out there!"  She stopped dead in her tracks, turned everything back on, and left to go play in her room - Success!) - I know this may not seem like much, but with only one child, this is definitely a joy to me.

• Getting a good look at the photos I've just loaded off my camera and onto my computer

• The smell of rosemary (I just have to run my fingers over the bush in the back yard whenever I walk past it)

• Summer (this was not a love of mine back during my goth days...full makeup, heavily-product-laden hair, boots and black clothes do not make for a pleasant summer - more like torture)

• Remembering childhood summers

• Johann Sebastian Bach (and his equally-talented offspring)

• My camera

• Backyard wildlife (bugs, flowers, bunnies, foxes, whatever happens to be visible from my window)

• Samantha's laughter, and her absolutely brilliant sense of humor - she really knows how to make me laugh!

There are so many more things I could mention.  I'm trying to make a mental note as they come to me, and will hopefully post more one day.  Thanks for indulging me!

Wednesday Special Needs/Disability Blog Hop: Say Cheese!

Happy Wednesday!  After a week of blissful slacking absence while at the beach last week and missing Meriah's Blog Hop, I'm back this week, and grateful that my hopelessly procrastinating brain and I don't have to think too hard for this one.  Fresh off yesterday's weighty topic of internet drama, I'm ready to add some cheese to my w(h)ine.  This week's Hop theme is "Say Cheese," providing fun pictures showing our connection to disability.  Easy peasy!!! 

While my connection to disability is not readily apparent in the pics below, my daughter is my connection, and my daughter should definitely be a movie star.  To be honest, Samantha actually has absolutely no clue what a movie star actually is, but I think she does get the concept of glitz and glamour and feeling beautiful.  That's not to say she ever doesn't feel beautiful, but when she does that little extra something, she's very proud, and ready to pass it along to the world to see. 

Thanks to Heather and Zoey's sweet, sweet gift they sent a few months ago, the book, Birdie's Big Girl Shoes, where Birdie put her mother's fancy, schmancy, big-heeled, pointy-toed shoes on, and struts around feeling just like a movie star, Samantha gets it.  While we were at the beach, we bought her a new pair of sunglasses, something she's been needing for some time now.  I gasped when I put them on her, and said, Sammi!  You look just like a... and she filled in the blank with, Movie Star!!

Yep, she gets it. 

The best part about these sunglasses, other than the fact that they match most of her clothes?  Well, with the aversion of her eyes when posing for the camera as of late, you can't tell if she's looking at the camera directly or not with her eyes covered!  Looks like she's looking right at'tcha, huh? 

I'll take it. 

Plenty of cheese here. 

The Absence of Drama

I don't like drama.  I stay away from it whenever possible, and I certainly don't intentionally cause it (some of you may be snickering, but seriously, drama is the last thing I ever want!  PMS-fueled ramblings can occasionally get me into a spot of trouble along the way, though...).  But there are certain places that just breed drama, no matter how innocuous they may seem at a glance, no matter how innocently they start.  And those places are usually found on, you guessed it, Facebook.

I have been conspicuously absent from FB in the last few months.  I post from time to time, usually from my phone, and visit my newsfeed periodically, commenting on this or that, but never digging very deep.  First of all, I really don't have the time.  Second, I don't necessarily have the inclination.  I care a lot about many of the people I have there, whether friends IRL or "friends" in the virtual world, but in reality can't know what each and every one of them is doing from one minute to the next.  And if I miss a major event in someone's life (which is a huge liklihood), I feel bad, but don't know quite how else to find out about it other than randomly and by accident while doing my occasional surfing.  Or from their blogs, if they happen to have one.   So my apologies in advance...  Don't get me wrong - I do love Facebook, and know that when I have the time, I can actually do some catching up.  I love to be there to offer words of support, condolence, or excitement over an accomplishment when I can.

If you're on Facebook, I'm sure you've been bombarded by the masses of group additions.  One of the changes Facebook made last year was the ability for anyone to add you to a group or event of their choice, whether or not you chose to be there.  This sets off a chain of events involving my e-mail inbox getting completely slammed with each. and. every. notification. someone. sends. to. the. group.  Until I can get to a computer, log on to Facebook, and either decline the event or shut off the notifications to the group.  Something I am unable to do from my cell phone, of course.  And while I'm happy to have these groups in my sidebar, running silently in the background, I don't often visit, primarily for the reason below. 

Almost weekly I hear about some new drama between clashing personalities and opinions that has taken place in one of these groups, or on someone's wall.  And these dramas start creating dividing lines, dissention, anger, anxiety, and general discontent.  The Facebook experience becomes sullied, and its primary purpose of uniting people is lost.  Just because we all share a connection to someone with the extra 21st chromosome doesn't mean we all have to be friends.  Or even to like each other.  But we still need to remember the most important R-Word we preach - Respect.  We still need to respect each other, respect each other's opinions.  And if those flare-ups do occur, please save yourselves some embarrassment and take it to a private message, rather than broadcasting in a public forum. 

I may be sounding old-fashioned and unrealistic here, but this is why I spend less and less time on Facebook.  I have my own opinions about things, to be sure.  But not at the expense of hurting someone else.  Most often with me, what you see is what you get.  No hidden agendas, no malice.  I'm super-sensitive and can be easily hurt, so my solution is to avoid the things that make me uncomfortable or insecure.  I'm sure I'm not the only one of my 1500-something Facebook "friends" who feels this way.  Living life as drama-free as I can keeps me healthy, keeps me present for myself and for my family, keeps me happy.

Who wouldn't want that?  

I think I'm due for a things that make me happy post soon. 

Just because.

On Beach Tags and Visitors

Last Tuesday, our 4th day at the beach, was a real weather disappointment.  We had plans for two sets of visitors to come, both of whom would have loved to have been able to lounge on the toasty sand in the sun, to have been able to put their feet in the water and enjoy the stark contrast of hot and cold.  Sadly, the day started out with grey skies, raging water with relentless and threatening breakers crashing on the shore, and a strong wind.  My aunt and my cousin, who lives in New Zealand and is home for a month or so to visit, came by in the morning.  It wasn't yet raining, so we took a walk on the empty beach.


My aunt and my cousin.

My cousin, Jenny, who happens to be a truly *amazing* and talented artist.  She had painted Samantha's portrait a few times in the past (see here and here), and has won a prestigious award for one of her paintings of her!

Now something that absolutely baffles me is the beach tag system there.  I'd heard someone say they thought that New Jersey is the only state that still institutes the use of beach tags, and someone else said they thought that that particular beach is the only one left that still uses the tags.  I haven't yet looked it up to confirm.  But how it works is that each season you can purchase tags, with pins, that are good for the season, or you can buy a shorter length tag that's good for a day or two.  These tags are what allow you to have access to the beach during the bulk of the daylight hours.  There are people stationed at the walkway entrances to the beach who inspect you for a valid tag, and if you don't have one, they can sell you one on the spot.  Then there are other people who patrol the beach to make sure each and every person over the age of 12 is displaying their tag.  Never mind that the pin leaves ragged holes in your swimsuit or cover up...

On Tuesday morning, amid the clouds, and the wind, and the raging sea, with the beach all but empty of any sign of human life, we left our tags in the condo and went for a walk.  And on Tuesday morning, amid the clouds, and the wind, and the raging sea, with the beach all but empty of any sign of human life, the beach tag lady, seated in her chair at the walkway entrance, nose in her book, demanded to see our tags. 

Really?  I just didn't get the point.  If it's to make money, trust me, nobody in their right mind would be coming to the beach in that weather without already being in possession of a tag!  Who would actually want to buy a tag, just to spend a few minutes walking back and forth? 

Even with my insistence that we would make it a very quick walk down to the water and back, just showing my-cousin-who-lives-in-New-Zealand (and seriously, she lives too far inland to get to visit the beach there very often), she hemmed and hawed, holding her ground, finally relenting when I gave her my solemn promise, completely prepared to hunt down a bible and raise my right hand. 

However, as we began to stroll, enjoying the quiet and solitude, chatting about this and that, I realized that I was starting to go against my promise, and to keep the peace and still keep my word in good faith, I knew that I really should go back and get our tags.  So I did, running all the way across the sand, heart trying to thump its way out of my chest, camera hugged tightly under my arm.  And what did I get in return when I handed over those tags?  An eye raised over the tag-Nazi's book, and a curt thank you. 

Half an hour later I got a good giggle as I saw her huddled under her blanket, the rain coming down steadily. 

Our next visitors, Kelli, Colin and Kailey, arrived a short time later.  We'd met them the last time we stayed at the beach there, nearly 2 years ago, and after keeping up with each others' lives via Facebook and our blogs, it was great to be able to spend time in person again!

Colin hadn't been walking when we saw him last, and Kelli had only just found out she was pregnant with Kailey.  Frozen cappuccinos in hand, courtesy of Wawa and my occasional errand-runner husband, we were ready to shoot the breeze and catch up in real time. 

Happy, well-caffeinated mommies, tired, completely *uncaffeinated* children...

I just loooove this handsome face!! (note the frozen cappuccino exchanging hands in the background...)



I love Kailey's wristband, so visible in this pic.

Cougar, or just happy to have a real, live doll to play with?

Yes, they're watching TV.  So sue me.