Thursday, June 27, 2013

On Summer and Childhood

My beautiful girl was born on the cusp of summer, on a day I can only assume was hot and sticky, full of sunshine and steam.  The very best time of year to be born (from a child's perspective), in my opinion, based on the experience of having been a child once myself.  My own birthday was right smack dab in the middle of summer, at a time when I can only feel pity for my poor, pregnant mother who must've endured nearly two months of misery as she carried me to term all those years ago. 

Summer was very special to me, the very best time of the year to have a birthday party, and each year brought some sort of outdoor festivities, usually in my yard, or at a local lake.  And somehow we often managed to have an ice cream cake from Baskin Robbins, in the shape of something I loved (usually a cat), that miraculously stayed un-melted in the summer sun until the last delicious spoonful hit my mouth.  Summer was a time of the dreaded YMCA day camp, academic enrichment programs, wreaking havoc with my cousins, who lived nearby.  Visits to the beach were plentiful, memories of my grandmother insisting that I wash all the sand and sea from my body thoroughly with the shockingly cold water from the outdoor hose before entering her house, dinners there consisting of the flounder my grandfather had caught that morning, fresh, translucent, sweet, local Silver Queen corn on the cobb and beautiful, shiny, fat, blood-red, beefsteak tomatoes sliced and eaten with nothing more than a sprinkle of salt.

As I entered high school, summers became a much-feared time of drama and self-consciousness, of melting make-up, temperatures too hot to sleep (as teenagers must), and the irrational fear of showing my horribly ugly, mal-formed knees (not really, but that's what I thought...), something fairly unavoidable as temperatures rose. 

And, thankfully, that eventually passed.  Summers once again became enjoyable, never more so than when I had my own little mini-me to introduce to the world.  Samantha's first summer was spent indoors, sheltering her from the heat as she struggled to maintain her body temperature, before the life-saving surgery to correct the hole in her heart was performed.  Samantha's subsequent summers have been full of playdates and pools, playgrounds and beaches, butterflies, blueberry picking and car trips to visit family and friends. 

I mourn the end of this summer already, just a mere 6 days beyond the solstace that marked its beginning, wishing there would be more time for all of the things I want to plan with my girl.  The summer is full, our weekends nearly booked, my commitment to minimizing ennui and making the season special for her in full-swing.

This was part of the Down Syndrome Blogs blog hop for June!


Wednesday, June 26, 2013

Making a Prenatal Diagnosis a Less Scary Place

I admit, I did not have a prenatal diagnosis for Samantha.  But I do know many, many people who did with their children with Down syndrome.  And the only real differences between knowing while your baby is still in-utero vs. finding out after they are born are a) that you can have more time to prepare for your baby's arrival and be aware of the sorts of things you can expect and b) that you can still have an option to terminate the pregnancy. 

Sadly, termination is the most popular option, especially in this day and age when prenatal testing is so simple and non-invasive, able to be conducted at a staggeringly early date, and so much more accurate than in the recent past.

And, sadder still, I strongly suspect these termination rates would be far, far lower upon the announcement of a prenatal diagnosis, if the medical professionals giving this life-altering news to an expectant mother could give it not with the doom and gloom of an old medical journal, not with the outdated list of what a child with trisomy 21 can't do, not with bleak, institutional photos of a depressing and isolating past, not with the primary next steps being the scheduling of a termination procedure.  The termination rates would be far, far lower and the expectant mothers could begin to prepare for a possible real future for their as-yet-unborn child, with a real place in their family if real, up-to-date, fair and balanced, positive and accurate information could be passed along.  Real facts.  Real photos. Real resources.  Real life.

Which is a beautiful thing.

The facts are that the vast majority of families of people with Down syndrome lead very happy lives, that the vast majority of siblings of people with Down syndrome say that their sibling with Ds has made them better people, that the vast majority of people with Down syndrome love their lives and are truly happy. has produced a fantastic resource that should be utilized by all medical professionals who could ever be in the position of delivering a Down syndrome diagnosis and furnished to and read by all expectant parents who have received one.  Understanding a Down Syndrome Diagnosis is available to download free on their website for parents, and in hard-copy for medical professionals.

For this week has paired up with Lettercase to donate $7.00 from each and every purchase on their site to ensure that these booklets can continue to be produced for free and spread out into the medical community and to expectant parents across the country.  Please visit the site and check out the great array of t-shirts and jewelry, and make your purchase today!  The offer is for this week only, ending on Saturday. 

Help everyone to see what we, as the parents of children with Down syndrome, already see.  That our lives are ordinary, that our children are contributing members of the community, that we are part of this amazing club we never knew we wanted to be a part of, that our children with Down syndrome have made us and our family members better people.

That life is a little different than what we'd expected, but that life is good.

I promise! 

Thursday, June 20, 2013

On Treasuring Moments and Becoming Sea Creatures

We arrived in Georgia close to 3pm.  Contrary to the weather reports we'd studied prior to our departure, the sun was shining, the air was warm and not too terribly humid, and not a drop of water lay on the roads or the leaves to betray any rain that may have fallen at all that day.  Because none had.  And none did.

Afternoons at the seaside in the south are funny things...violent storms can blow in from over the ocean with only moments of notice, torrential downpours, strong winds, and fast as they engulf you...they are gone, wet remnants evaporating rapidly with the sun's rays that have returned with a hot vengeance.  And, on some days, there is nothing but sunshine and happiness. 

We definitely had one of those sunshine and happiness kinds of weeks.

On the day we arrived, Samantha and I decided to take full advantage of that afternoon sunshine and pay a visit to the beach we'd traveled so far to see.  Don't put your bathing suit on I told her.  We'll just sit on the beach, and walk along the shoreline, but we're *not* going to go in, okay?  Just a *quick* visit... 

She was okay with that.

Not only are afternoons at the seaside in the south funny things, but the beach is a funny thing.  Give me 90+ degrees and a body of water, and the pull is almost too great to's like a magnet, or a siren, calling me to its depths.  And apparently not just for me.  While I say that I got suckered by Samantha that day, I know, deep down, and admit only here, that our actions were as much to do with my own desire as they were to do with hers. 

Dress/skirt & t-shirt and all, in we went, starting at our ankles, then propelled forward by the the warm, bath-like water that embraced us, that promised to give relief to the oven that the air above us had suddenly become.

Fully-clothed, in we went, the joy on our faces as we splashed mirrored by those that saw us, that fully-appreciated our would-be-folly, evident in the giggles and smiles of others who secretly wished they could be so care-free, to live in the moment as we ourselves were doing.  Dripping, squeezing out our skirts, we emerged from the water like beautiful sea creatures and found a place on the sand to complete the scene.    

I have spoken of creating those moments for Samantha, moments of spontaneity, moments that would be remembered.  And I have to remember myself that I must work to create them, that I must throw caution (or, at least, cleanliness and routine) to the wind and allow them to happen. 

I hope she remembers this.

Wednesday, June 19, 2013

I Give Up!!!

They finally did it. 

They broke me. 

I held out and held out and tried and tried to deal with the garbage, to suck it up and know that what I was doing was for the greater good, perhaps not to bring about world peace, but peace within my inner circle, and finally had to put my foot down and say enough is enough.  I should have known from the get-go that my grand vision was doomed, my refusal to let them bother me in favor of happy blog readers wouldn't...couldn't...last. 


Blog comments by incessant and tireless robotic pfishing services, asking me to buy Viagra, visit their websites, talk to a sexy woman, grow my man-parts, leaving comments telling me what great content I have, what an informative site, how they've shared it with their brother/cousin/uncle/friend/pet raccoon. 


I remember, about a year ago, caving to requests by people who said Word Verification made commenting on my blog difficult.  And plentiful, happy blog readers are what I want, right? 


And the very minute I un-checked the box in my settings to remove the dreaded Word Verification option, I realized I'd unleashed Pandora's Box, sold my soul to the lame attempts of robo-advertisers (?), if you can call them that, to suck some poor devil in, to grab them in their clutches and do who-knows-what to them or to their pristine, previously virus-free computer.  Are people really such suckers?  Who reads that stuff, anyway? 

And the first 2 comments came through, captured, in my continued quest to maintain some semblance of control, by my always-enabled author-moderation settings. 

And I knew, even then, that I'd ultimately cave.

And, last week, while on vacation and not consistently checking e-mail, not at all checking my blog or reading others, I managed to amass 72 (seventy-two!!!) spam comments, and not. one. single. legitimate. one.

Which told me 2 things.

1) Word Verification is going back up (I put it up today)

2) I don't get any readers when I'm not posting (well, duh!)

Depressing all-around.

So, Word Verification is back up, and blog posts are being crafted, and hopefully all will be well and sunny again in the blogosphere, for me at least.  And, if you have difficulty leaving comments because of it, please, please keep trying - I'm seriously craving the legitimate blog love these days!!    


Tuesday, June 18, 2013

Lessons in Packing

Every time I go on vacation to the beach, I invariably learn something new about efficient packing.  For example...

*Do NOT bring make-up or hair supplies.  The humidity makes both completely irrelevant and embarrassingly messy (hint:  products drip).  You'll learn to love the new (make-up-and-hair-do-free) you eventually...

*Don't bother bringing a book.  Some former vacationer at your location will have likely left a crappy good, crappy light, crappy fluffy summer read behind.  I can't remember what I read there last year, but this year's choice was Nora Roberts' Vision In White.  Or something like that.  Title's not really important.  Nor is the need for a riveting plot, apparently.

*Bring sugar for coffee.  I'm starting to think we're the only people on the planet that still use real sugar for things and not some color-coded packet of mystery-sweetener.  Trust me, I really don't care if the yellow one's supposed to be "natural."  It still tastes like crap.

*Bring coffee.  What's in the cupboard/fridge/freezer is usually frighteningly out of date.

*Don't pay the least bit of attention to the weather reports beforehand, and bring that bottle of aloe vera gel anyway.  Your back and shoulders will thank you.  I remember vacillating back and forth while packing about whether or not to bring it, thinking I really didn't need to drag around the extra weight if each and every day was supposed to be cloudy or rainy.  Trust me, sunburn relief would have been worth the backache of carrying around a whopping extra 2 ounces stored in a half-full bottle.

*What were you thinking, bringing a pair of jeans?  Haven't you learned yet that there's no such thing as a cool evening in Georgia in the summer?

*Diet, schmiet.  All those healthy things you thought to bring with you?  Forget 'em.  Everything on vacation is pale and fried and sinfully delicious, and if you fret about it, the guilt will kill you faster than your clogged arteries will.  Substitute sweet potato fries for the regular variety if you must, to make your conscience feel a little bit better.  Vitamin A, right?  Repent with salad and flatbread crisps when you get home.

*Forget the toys for the kid.  She'll be so exhausted when she gets back from frolicking at the beach or being dragged on day-trips to nowhere, she'll be more than happy to just veg out with a dvd or books.  Who needs toys?  They'll never even get looked at.

*Don't send the Android tablet or iPad out for repair the week before your trip.  Your child might never forgive you.  Or, at the very least, you'll never hear the end of it.  Oh, my poor, poor baby...

*Pack an umbrella.  Not for the time at the beach, but for the return home during a massive downpour and tornado warning for your town.  Seriously, I would've been more than happy to wait out the rain in the car, but when coupled with the words on the radio commanding that you take cover now, the run for the house was critical so we could get down to the basement in moments, just in time for the rain to stop, storm to end, warning to be lifted.  Weather's a funny thing...

Let's see what next year teaches us.

Wednesday, June 5, 2013

When an Impulse Buy Goes Very, Very Right

We honestly didn't know what to get Samantha for her birthday, so we didn't really get anything.  I think that may make us sound like bad parents, but sometimes we can be a little blinded by being too close to her on a daily basis.  All we see is a child who doesn't play much with toys, who doesn't like to color, who has no penchant for music whatsoever, and who lives for her books.  Sure, we could get her books, but we also hoped to be showered by epiphanies about actual toys she might actually want. 
But we weren't.
As I stood in line one day at Ross, purchasing a pair of pink sandals for her (which later proved to be miles too big, but for $7 I don't mind waiting until she grows into them), famished because I'd missed lunch and was forced to drool over look at rack upon rack of seemingly delicious bags of organic chips and popcorn with fancy and enticing names lining the path to payment, I saw a shelf of inexpensive boxed activity sets.  But Samantha totally doesn't like activity sets or arts and crafts, right?
I suddenly revealed to myself my own faulty logic in coming to this conclusion.  It's not that she doesn't like them, it's that I don't like the mess or the need for organization and patience that generally comes with them.  I can sit her down in front of a craft, give her instructions, and let her have-at-it, but I'll invariably become a bit cross as she does something wrong, spills some paint, over-glues an object or somehow manages to do something other than what's expected by the makers of said craft, which then leads to her own frustration, which then leads to her refusal to do anything, which then leads to me, in a huff, packing everything up and vowing never to bring it out again until it can be done correctly. 
Okay, so I exaggerate a tiny bit...  It's really not so awful, but she really doesn't have the staying-power for some of those things and would rather go and do something quicker or easier. 
So it was with an enormous amount of ambition that I, still waiting in line for my turn to pay, began to fondle a box containing a weaving-loom-pot-holder kit.  Remember those?  I loved the sense of accomplishment at actually having made something really, really cool, by myself.  But could my kid do it?   
I highly doubted it, a sentiment echoed by my husband when I got home with the box that would likely end up at the bottom of a closet for the next few years.  And again, for $5, that was a risk worth taking, and at the very least, she'd have something from us to open (in addition to a small toy that Daddy had picked up the day before).
Yesterday, I returned home from work to an astonishing sight - fine motor dexterity at it's absolute best being displayed by Samantha who was creating a pot holder masterpiece.
On. Her. Own.  (after being instructed by her aide, who started it off for her)
We were floored.  She did an amazing job, not needing any supervision until she completed the task and handed it over to me to finish off the edges. 
Trust me when I tell you I will treasure that little blue and white pot holder forever. 

Tuesday, June 4, 2013

The Calm After the Storm, or Post Party Peace

And so as the craziness of the last 3 months begins to wind down, as I try to re-group and find myself again, to find my voice that had until now been such a constant companion of both my waking and sleeping hours (figuratively, folks!  My husband will readily tell you that my voice is already loud and clear on most days...), I can honestly say that while it was all such a whirlwind, it was the most exhilarating and rewarding whirlwind.  Never, ever, in my whole life, have I felt so fully-scheduled, so busy with interesting things and events and plans and dreams and burgeoning creativity, both personally and with/for Samantha.  It's been a real ride, and while I'm glad it's nearly at an end with the start of the summer season, I can look back with a real sense of accomplishment.
Saturday was Samantha's birthday party.  And while my creative juices did not flow as well as I'd hoped they would, while things didn't look quite as rich or as well put together as I'd planned, I believe that was because I never really felt the theme, was never truly sold on it.  I began setting things up in the park pavilion at 8:45am, and when Samantha arrived at 10, she looked things over, took a harder look at the pictures from Mike the Knight that were glued down to the tablecloths, and promptly dismissed it all in favor of a good romp on the playground.  I really suspected it would be that way, too, so I honestly wasn't at all bothered.  Now that that's out of the way, I can do something completely different next year, plan earlier in advance for it, and perhaps do a color theme again.  SO much easier, and with so much more visual aesthetic reward!!
The day was beautiful, sunny and hot.  A TON of Sammi's classmates showed up, which really made us happy, and her teacher, her resource teacher, and her former preschool teacher all came to celebrate as well.  A little bit of bittersweet came when a parent told me that upon receiving the invitation to the party, her daughter, a very, very sweet girl, told her mother that she absolutely had to go to Sammi's party because Sammi is so nice and because she was worried that there wouldn't be very many children there. 
I won't lie and say that statement didn't bother me. 
And, in the same breath, I will say that it elated me. 
She was honestly looking out for my girl. 
But it made me sad all the same.
Okay, enough of that.
There was lots of food, nearly not enough drinks, definitely not enough watermelon (so noted for future events...), and massive amounts of cake, since my mother's beautiful cupcakes went first, like wildfire!
We're so grateful to everyone who came, to everyone who cares about my girl, brought her lovely gifts, and spent time with her to celebrate her 7th birthday. 
If any of you are still reading these days, I hope you'll stick around!  I'm hoping to revive things a bit, get cracking on lots of new posts, and start babbling incessantly once again, as things should be.  Stay tuned!