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January, 2013 | Everyday Childhood

Archives for January 2013

Keep Calm and Go To Safeway

My almost-nine-year old asked if she could write up the grocery shopping list.  Busy with other things, I dictated without looking.

KEEP CALM AND GO BUY

 

 

This is the same kid who was responsible for this instructional pamphlet spying on the Huffington Post.

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Make a Difference.

“Make a Muscle, Make a Difference.”

Lauren, aged 5 and with a huge grin:  Mom, am I going to have SMA forever?

Me:  ….yes.

Lauren:  aw, snap.  [pause]  Can we get a bouncy house for my birthday even though I can’t go in it?  I want to watch everyone else jump.  It’s so funny when their hair flies up in the air.  I wish I could go in the bouncy house.

Lauren:  Will I ever be old enough to walk?

Me:  It’s not your age, sugar.  It’s your muscles.  Your leg muscles aren’t strong enough for you to walk on them.

Lauren:  But I can never run if I can’t walk.  How do I run?

She has a point, but how can I look at this little girl and tell her that she’ll never walk?  I never lie to them, just gloss over certain details until the twins are a little older.  But what do I say to a kid who just wants to jump in a bouncy house, but she thinks she can’t only because she’s “still a baby”?  She’s too young for Punnett squares, though that concept really is the beginning of the fundamental answers to her question.

Their dad and I are carriers for the SMA gene.  We didn’t know.  We already had one beautiful and brilliant daughter and were hoping for another.  Lickety split, we found ourselves in an operating room while our doctor delivered not one but two babies, and the next thing we know we’re on a first name basis with pediatric neurologists.

Here’s where I distract you with photos of happy, charming children:

classphotos2012 SAMSUNG dbacksopeningday hansolo Lauren Disneyworld 4 TieFighter

 

My kids are the real stars here.  They are the heroes.  They are the most patient, caring, tolerating, understanding beings on this planet.   They are so trusting and happy and brave.  They brighten every room they enter–that’s not just a mommy perspective on my part, but an observable phenomenon which happens wherever they go.  They are a joy, and I get to be the one to share them with all of you.

I’m just a regular person.  I have all these kids, but I don’t really know what I’m doing here.  The ‘having them’ part was relatively easy.  It’s the ‘parenting them through physical disabilities’ part that sometimes presents challenges.  I know I’m not the first or last person to be challenged with such a task, but if I can help other parents avoid conversations like the one I just had above then those are the umpteen reasons I have to champion this cause.  Can we cure muscular dystrophy already?

The 2013 Muscle Walk in Tempe:  Walk with us.  Donate to our team.  Show your support.  Research details and progress here.  Donation and participation details here.  C’mon, it only takes 19 muscles to click a link (I completely made that up, it could be 200 muscles for all I know).  But I will take your money however it comes.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Wordless Wednesday

(I never do this, but couldn’t help myself when I saw this.)  (Sorry for all these words I’m not supposed to write.)

WW1

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

The Internet. Oh boy.

I experienced something new recently and I don’t know what to think about it.

I posted a photo online of one of the twins last year.  It was a cute photo.  At the time all my Facebook friends “liked” it.  It was a great photo, I admit.  But that was months ago.

Last week I was forwarded a forward of an email with a screen shot of my photo from someone else’s page on Facebook and a “FYI!  Great pic!” message.  But the photo on Facebook was just posted that day, and from someone I don’t know.

I know we live in this digital age, where everything is right here and right now and ‘shared’ and ‘liked’.  If I post a photo online, I am aware that I lose ownership and control over that photo.  With each photo I post, I think about that.  “Am I okay with literally every person in the universe seeing this?  Am I strong enough to handle criticism (there will always be someone who finds fault with something about a photo)?”

But this photo really made the rounds.  When I posted it originally, 80 of my friends ‘liked’ it.  When it was posted this time, it got 4,000 ‘Likes’ and over 300 ‘shares’.  In three days.

What was intended to be a great photo of a moment with my kid turned into something bigger–not only the heart warming feeling that comes with the knowledge that our sweet photo made so many people’s day, but also a feeling of vulnerability on my part, after being made aware so many strangers saw what my kid looks like.

In the end I am that mother bear, ferociously protecting her young.  I love that my kiddo’s photo is responsible for making so many smile, but on the other hand 4,000+ people who I don’t know can now pick my five year old out of a lineup.  Some had great responses and feedback, but it was mainly a reminder that we do not post photos in a vacuum here.

Please be mindful about the photos you post online.  Realize that once you post it, you can’t take it back.  It’s out there, somewhere and always.  Also realize that once you post it, you can’t control a thing about it.  I bet this sounds obvious to you, but imagine stumbling upon a personal photo on an unrelated site.  You can’t even get angry at anyone.  If you post it anywhere, it’s fair game.

Just be careful.

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The organizations who posted my photo were legitimate charitable causes and posted it in order to bring smiles to their followers and get engagement from them.   They are honorable people and causes, and I hold nothing against them.  It was a lesson for me though, to remember that these internets are a big place.  Don’t post things that you might be uncomfortable with either your family OR strangers seeing.  This should be obvious to us, but just a reminder.

Okay, FINE.  Here is the photo I’ve been talking about.  I’m sure I would have posted it eventually!  Yeah, it’s pretty amazing, remarkable, adorable.  Should you disagree, I know like 4,000 other people who will argue that it IS.

Kyle Han Solo 2012

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Sweet Solitude

Is it just me or does anyone else ever feel like they can never find a moment to be alone? Even locking myself in the bathroom doesn’t work anymore. But despite the chaos that often ensues around me… I find time to do somethings that are totally selfishly for me.

photo(4)

Pedicures and Manicures

These are a must. I have a pedicure every few weeks. My toes look cute and I feel pretty and pampered.

Cookies and Milk

Weird. I know. But snuggling in with a glass of milk, a couple of cookies, and last week’s Grey’s Anatomy is a little piece of heaven.

Kickboxing

Yes. Kickboxing. All the stresses of the day seem to melt away when I beat the stuffing out of that bag. Sure… a few bumps and bruises come with it… but it’s totally worth it. Not only is it a great stress reliever… but I lost 15 pounds in my first 3 months.

Phone Apps

When I’m in the bathtub… I often catch up on my tweets. It’s true. Next time you get a tweet from me… I could very well be enjoying a bubble bath! Angry Birds (still), Family Feud (challenge me), and my latest obsession… Solitaire Deluxe. Oh how I love a good card game! Especially when I’m enjoying some solitaire-y time! *giggle* Solitaire-y!

Now it’s your turn!

What do you do with your alone time? I’m always looking for new ways to get my quiet time on… so share!

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And in case you were wondering… Solitaire Deluxe is an absolutely FREE download that you can “pick up and play” anywhere… even without an Internet connection.

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Despite the fact that I play Solitaire Deluxe in the bathtub regardless… I need to let you know that this is a sponsored post written by me on behalf of Mobile Deluxe.

Pillow Pet. Dream Lite. Stuffie. StickAForkInMe.

I’m a bit frustrated with my kids.  Their wish lists for Christmas this year were pretty lame.  Incidentally, every one of those lame gifts seem to be merchandise hocked in commercials on whatever new TV channel I started letting them watch a while ago!  Imagine!

Last Christmas the kids all pleaded for Pillow Pets*.  What a clever product–it’s a bumble bee/unicorn/dog which when the underside is folded and properly velcroed appears to have four legs and stand up!  Like your own pet!  Unvelcro it and voila–you have an entirely nonfunctional pillow!  Yeah, nobody’s head falls asleep on those things.  The “head” end isn’t conducive to anyone’s head laying on it, and when faced with the other end the whole “pillow” is too short to be useful.  Those Pillow Pet commercials could bring their enthusiasm down a notch, I say.

But last year, I gave in.  All three got Pillow Pets.  It was supposed to be the ace-in-the-hole gift, the Big Gift with Oomph.  They begged for these things.  They got them.  Their reaction?  “I wish this was a Dream Lite.”

Turns out, a week before Christmas last year began commercials for a Pillow Pet that lights up.  What the…..

So for the last twelve months I’ve listened to all three kids begging for a Dream Lite.  You know, it’s what they all have already except with lights.  Yet another stuffed animal to throw on top of the giant pile of stuffed animals that my kids couldn’t care less about.

Santa brought all three kids Dream Lites*.  oooh!  aaah!  It’s like a Pillow Pet, but it lights up!  I feel like I bought those damned things with blood money.  I hated it.  More stuffed animals.  More useless crap.  But maybe I just don’t understand.  Maybe a Dream Lite really WILL  change their world!  Make their day!  I want my kids to smile–who doesn’t want to make their kids smile–so let’s do this!  A Dream Lite!

One hundred dollars worth of Dream Lites.

The kids open the Dream Lites.  “Aww man!  I thought this was a Stuffie!”

Me:  Say what?  (still viscerally feeling the loss of the $100 bill spent to buy the Dream Lites.)

Kids:  We ALL wanted Stuffies!  Santa didn’t bring them!  We want Stuffies!  ::sob::sob::sob::

After some research, a Stuffie* is a Pillow Pet is a Dream Lite, but the Stuffie has a pocket or something.  Anyone else catching a pattern here?

I don’t know but I’m exhausted just recounting it all.  Suffice to say that my kids can stuff their Stuffies with all the stuff that their smart Grandma gave them instead of blowing her dough on other exactly-the-same-thing-but-different plush toys.  I’m outta here.

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^No Pillow Pets, Dream Lites, or Stuffies were harmed in the writing of this blog post.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.