At 26 gestational weeks, after an amniocentesis and genetic testing, he was diagnosed with Diastrophic Dysplasia, a rare type of dwarfism.

Now 8 years old, our son Kai is happy, healthy, and enjoying life.

The purpose of this blog is to lend support and encouragement to others in similar situations and to share the tremendous experiences we've had and will continue to have as we raise our little, little boy.

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Sunday, January 18, 2015

What's Wrong With That Boy?

What’s Wrong With That Boy?
Advice for Parents Everyone

The only normal people are the ones you don’t know very well
–Alfred Adler

Kai has Diastrophic Dysplasia, a rare type of dwarfism. He wears orthotic braces on his feet and can’t walk without the aid of his walker. He’s six years old but stands 25 inches tall (the average six year old stands 42 inches tall). Kai gets a lot of attention when we go out in public. This is partly because he treats the world like his own personal racetrack; zooming, skidding, crisscrossing, and racing around at top speed with his walker. But he gets attention for another simple reason: He’s different. Children are especially vocal about noticing Kai's physical differences. And after several years of observing parents' reactions to their childrens' outbursts over Kai, I’ve found that most parents, although well-intentioned, could do better in helping their children understand some things about people who look different.

  1. First and foremost, don’t shush your child. Trust me, I get it. Your kid blurted something out, you’re embarrassed and want to melt into the floor, and you really hope that I didn’t hear what he said. It’s an uncomfortable situation; I've been there, too. But shushing your child isn’t the right course of action. It teaches him that there’s something wrong with or bad about noticing and asking questions about someone who is different; it perpetuates the fear/aversion/social stigmas of those who are disabled or different. 

  1. Try, try, try to NOT be embarrassed about what your child said or asked, and do address the question/comment she expressed. Try really hard on this one, it’s important! Take a breath if you need to, then answer her in the same way you would any other question. And since you didn’t shush her, you don’t have to lower your voice to answer, either. Just use the same conversational tone you normally would—again reinforcing the notion that there is nothing wrong with being different or asking questions about someone who is different. And please do make sure you emphasize that point: that there is nothing wrong with "that boy." 


  1. Do say hi (I guess this one is optional). Most of the time Kai and I are not in a hurry and would love to chat. This experience can do a lot of good for both you and your child—and us! I would rather have you let me answer your child’s question or respond to his comment, than have you shush and him and walk away. We aren’t afraid to answer any question you or your child might ask. We love making new friends, even if it’s only for a few minutes.


Friday, October 11, 2013

Worth a Read

Oh, you're a stay-at-home Mom? What do you DO all day?!

Great article! Well worth a few minutes to read.

http://themattwalshblog.com/2013/10/09/youre-a-stay-at-home-mom-what-do-you-do-all-day/

 

Saturday, July 27, 2013

From The End of June

Obviously I've become terrible at blogging. But here are a few pictures from last month.


Kai flung himself onto his pillow, sobbing. When he was done being upset about whatever it was he was upset about, I discovered this: 
Hilarious. And adorable.


 Two cute pajama boys!
Grey is a gigantor* baby. 

Happy, happy boys! Kai loves his baby brother.


 A few days before we moved, Kai proudly showed me this:
His masterpiece. It's a family, drawn in Sharpie. On the wall. We had been incident-free for a whole year... And how could I be mad? It was so adorable. And he was so proud.


*The second definition.

Friday, January 25, 2013

This boy loves his cars.  


 He found my lipstick.  I'm glad one of us is brave enough to wear that shade.


 Sometimes a boy just needs to sit in a box, OK?
Me: Whatcha doin'?
Kai: Oh, I'm just finking (thinking)

I couldn't resist.  He fell asleep and I put his Superhero cape on him and took pictures.

Kai, "pumping" milk from his "buggies"


 Relaxing on a Sunday walk.


 X-Rays at Shriners.  He was excited about changing from his pants into these cotton shorts.  

This was taken in December (I think).  Grey was about a month old.  Kai loves being the big brother!

I detect a theme, here...


 And me.  This is from a while ago (I was still pregnant).  I'm usually behind the camera; there aren't a lot of photos of me so enjoy it.  It'll be the last one you see for a while.

Medical gloves on Kai's feet per his request.  It's never boring when Kai's around!

Also from a while ago.  In the waiting room of my OB's office.  I'm not sure we brought enough McQueens..

From Christmas.  Kai and Grey with their cousins.  So many Rivas boys!!  I love it!  From the left: Joseph, Kai, Baby Grey, Jacob, Baby Evan, and Matthew.  

Monday, December 24, 2012

Merry Christmas 2012

This year my greatest accomplishment was creating a human being.  Here I am, still in the creation stage.  36.5 weeks with baby #4.  

Then, at 11 PM on Saturday, November 10, my water broke.  
NINE LONG HOURS LATER, this little man was placed in my arms:
Grey Carlos Rivas
November 11, 2011
9:38 AM
6 lbs 11 oz
20 inches
blue eyes, dark hair

He was a sweet, tiny little thing.






First my sister came.  I didn't take any pictures because I don't like her very much.
Just kidding.
Carrie, why didn't we take more pictures???  People, I love my sister Carrie.  She and I have so much fun together.  I'm sad that we only got to keep her for a week.  

She left and John's mom, Elizabeth came.  I am a truly blessed lady because I have a fabulous mother-in-law.  She is funny and sweet and a joy to be around.  Both my boys just love their 'Mama Ani'!!


After Mama Ani left, my mom came. It was sooo nice to have her come visit.  A girl needs her mom.  I wish she would move next door.  Truly, I do.



 Just in case you missed the look my little Hailey Kate is giving the camera, here it is close up:
j
She was so over having her picture taken.  I love that girl!

My mom and me

Baby Grey, one month old




Thursday, June 28, 2012

I Wish...

...I would've taken a picture of Kai's face yesterday when, in a store, a lady came up to us and started talking to him in baby talk--EVEN AFTER I told her he was three years old.  His face was a perfect mix of disgust and incredulity.  It was priceless.  

Tuesday, June 26, 2012

Daily Dose of Kai

Sometimes I blog more for myself than for anyone else.  I've forgotten a lot of the cute things my girls did because I didn't write it down or take a picture.  Thanks to advancements in technology (oh, how I love my smartphone!), most of Kai's cuteness is photographed and recorded.  

This, for example (did I already post this one?  I think I did.  But it's just so dang cute!):
The cutest little pouter on the planet.


And of course, Target's "ABC trashcan".  He can't read, but The Boy recognizes letters when he sees them!


 New t-shirt.  He's graduating from little brother to big brother and he's so proud!


 Kai also loves my phone.  He loves to take pictures and videos and then watch them.  He wanted to take a picture of the baby.  So here you are, people of the internet.  My 17-week GUT.


 Forget the carts with the steering wheels.  Kai nearly always insists on getting the "baby" carts.  I know, I know--he's not buckled.  But he's happy and adorable and I'm standing righttherenexttohimalways.



This was in Kai's fortune cookie at dinner the other night.  Strange?  Ironic?  Coincidental?  Truly fortuitous? Kai has lots of medical opportunities in his near and distant future.  I wonder which one will be "interesting."
Hmmmm.


P.S.  Potty training is going great!  He reminds me now when he need to use the bathroom.  Our biggest impediment now is (oddly enough) ME!  Lifting Kai onto and off of his little Lightning McQueen toilet is taking a toll on my back and tailbone, which are always weak and achy starting at about 20 gestational weeks (this is thanks to a 20-year old tailbone injury).