Monday, August 22, 2011

Why Hello Spinabifida...

NOTE:  I originally posted this on No Hands But Ours (NHBO), but decided to post here as well for those who may not subscribe to NHBO.  Sorry if it is a repeat for some.

Ping:  Dad!  Dad!  DAD!  
Me:  What's up baby?  
Ping:  Can you take my picture?!
Me:  Of course!  Let me get the camera.  
Ping:  YAY!
... a few seconds later ...  
Me:  Okay baby, smile for Daddy!  
Ping:  What?  No.  I no smile.  
Me:  But you gotta smile for the picture.  You gotta look cute.
Ping:  I want you to take a picture of my back!  
Me:  Oh?  Your back?  
Ping:  Yea!  My back!  
Me:  Why?  
Ping:  Because I have something there!  
Me:  *smiling*  Yes, yes you do.  
Ping:  And people like to see it!  
Me:  Oh do they?  Well, that would explain why you keep lifting up your shirt in Sunday School...  that was an awkward conversation with your Sunday School Teacher.  
Ping:  What is on my back Daddy?  
Me:  Oh baby, we've talked about this before.  You had an owie on your back.  But the doctors fixed it, and now it is all good.  
Ping:  I had a surgar-ie on my back?  
Me:  Yes baby you had a surgery.  But, lots of people have had surgeries.  Mommy has had surgeries, Daddy has.  Even your big brother K has had surgeries.  
Ping:  But my back is broken?  
Me:  No baby, your back is fine.
Ping:  Can I see it?  
Me:  Yes, of course.  Here let me take your picture.  
Ping:  *looking at picture on the camera*  Heeeeeey, I have an owie!  Hahahahaaaaa!

That was not the 1st time, nor will it be the last time she will have asked me to take a picture of her back and show it to her.  Ping has finally clued in that there is "something" special with her back. Well, she clued into that fact a long time... I'm just slowly cluing into the fact that she has clued into it.

Now our beautiful Ping has Spinabifida - and not the "minor" one either.  We're talking doctors can't explain why she is doing so well when the tests show that she had nerve damange.  I'm not going to go into detail with all that right now, there are many great sites you can visit to get more information on Spinabifida (including this one), and our family blog has lots of information on Ping's specific spinabifida (I can be contacted if you require (or are curious for) more information on Spinabifida) - but what I really want to do tonight, as I sit here blogging is to paint a picture of what Spinabifida really looks like for us.  And since pictures are worth a thousand words, I'm gonna stop talking and add a couple of pictures.  Man, I wish my Grade 7 English teacher bought that "picture is worth a thousand words" principal... then the essays I handed in with all my doodlings would have been worth well over the 500 words she wanted me to write about Hamlet.  But I digress.  Sorry.  

Yes, we do have doctor appointments.  At first, it was quite often.  Many appointments with the neurologists, spine people, urologists, etc.  It was crazy.  But once all the initial assessments are done, its a once a year check up.  Hmmmm... kind of like NON-Spinabifida children have an annual check up.
Yes, there may be many Doctor appointments...
But she doesn't seem to mind.
She does love her sports... she likes swimming.  Which is good, because it can be an excellent exercise for her.
At a friends pool...
... or at the beach.
She loves climbing trees, or play structures, she is going to follow her big sister G where ever she goes.  And since G loves climbing on everything, Ping follows.
The did eventually get stuck in this tree... and I had to get them down.
Happily she did NOT get stuck in the ropes though.
She was in the summer soccer league again this year, and yup, I was coaching.  This is her trying to steal the cooler full of freezies during a match.
Don't just stand there, help!
Pings older brother D has been taking Karate for a couple of years now.  And much like any younger sibling, she wants to do what her brothers/sisters are doing.  The Sensis at the DoJo know she has spinabifida and have recommended that we get some chest padding for her, and put it on backwards when she starts sparing.
I'm a cute ninja!  Look, I had red flowers in my hair!
I have to blog about her 1st match, it was so cute.  I was worried that she would revert back to her  feisty ways, but when the sensi said "fight", she looked at me like "what, now, NOW I'm allowed to hit people?!"
Playing with others...
Me and the girls went camping a little bit ago - while playing at the beach and park the girls made friends with a small group of children (Indian, Vietnamese, french Canadian ... interesting group.  The kids didn't care) who were running relays.

And Dancing... oh yes, there will be dancing!
Every time a movie ends, its Dance Time!  The girls tend to jump up and shake their little booty until the music ends.  Well, this time, G was too tired to dance, so the Yeti had to fill in... I love at the end when she falls over shes shaking her booty so hard.

So yea, that's been about 2 weeks worth of life with Spinabifida there.  Well, the Doctors office was a while ago.  But the camping, swimming, relay running and booty shaking were all in the past couple of weeks... and it was a pretty busy week full of many activities which some may think impossible for a child with Spinabifida.  Now, every case is different, but this is ours... Hopefully there is something in there, that if you have been considering adopting, and maybe Spinabifida has come up in conversation, that you can use... even if only for hope. I know spinabifida is a big word, and I know it can be scary... and that's why most days when I see my daughter scratch her back, or lean awkwardly to the side I hear the voice in my head going "Why hello spinabifida... I had almost forgotten about you.  Guess I was too busy being amazed at how beautiful my daughter is."


  1. Love this post and I am glad that Ping is doing so well. She is a beautiful girl and that is what people see in her.

  2. I can sense your true love for all your children, all the way to Sweden!

    Thanks for a great post!

  3. What a great post. And, yup, she's pretty darn beautiful.

  4. Love the story, love the pictures. Beautiful girls!!! Can't see the video though :-)

  5. Amazing attitude, amazing fortitude... but of all the "Why, hello..." things you've welcomed(?) into your home lately, I'm wishing you didn't have to find a place for this particular guest!

    Ping's definitely a beauty, both inside and out... and I'm sure her folks have helped a bit with that development. :-) More power to ya! ("But why won't the videos play?" he whines...)

  6. Sounds like Hello and Goodbye from the looks of Pings abilities! Awesome!

  7. Hmmmm... are the videos working for anyone? I can't test them myself, they always work - but probably because they are linked in from my Gmail account. Maybe I'll post them to youtube and update the post. I'll see what I can do.