The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Saturday, May 29, 2010

Braska: For Sweet Ella Grace [Down syndrome, leukemia]


(This is for my friend Ella Grace. She is sick with loo-kee-mee-uh.  It’s a very bad sick.  But she’s going to get better!!  And she’s so funny! You should go tell her hi and see how cute she is.  She loves BabyLegs, just like me!)

Wednesday, May 19, 2010

Do you know your letters?? [Down syndrome, speech]

Here’s my last movie for you to watch. Here’s the first and the second if you missed them. At least until I make some more!  This was when I was working on my letters and numbers… you can say them along with me if you want to practice, too.

Monday, May 17, 2010

Sayin’ my animals [Down syndrome, speech]

Here’s another movie from last night.  There’s still one more movie for me to show you later when I work on my letters and numbers.  If you didn’t see the first one, it’s over here.

This one was when me and Mommy were looking at pictures on the computer of animals and stuff. 

(Mommy note: I have been told more than once that I need to show Braska’s mistakes along with her victories in order to show a balanced—more “real”—version of her skills and abilities.  I won’t digress too much about my responce to that thought, but I will just say that this video has both correct and incorrect answers.  Hope that helps her seem “real.”)

Sunday, May 16, 2010

I like it when… [Down syndrome, speech]

We got a really fun book at the library a few weeks ago, and it is my favorite!  I know all the pages and I can even sit and read it by myself when Mommy is busy.  She saw me reading today and thought we could make a movie.  Usually she doesn’t talk to me when I’m reading, but she said this worked a little better to keep me going.  I can take a long time to read a book!

So here’s a little movie…

(Mommy note:  She had just refused a nap, thanks to a 5-minute snooze in the van.  She is a little sloppier than usual, but I think you’ll get the idea…)

There’s two more movies from today, but I’ll show them to you tomorrow. Make sure and come back to see them!

Thursday, May 13, 2010

Having twins! [Down syndrome post]

Did you do a double take at the title?  Did you jump right into the post to get the “big news”?  It’s funny what a couple words and an exclamation point can do to some people.

We’re not having twins. Or babies of any kind.  Just to be clear.

I get asked a lot about how the girls are doing in terms of development and size, relative to each other.  Only a few times have I been asked when we are out if they are twins.  I think the difference in hair length is the big giveaway for most, at least that’s been the “tip-off” for a couple people who mentioned it.  But we do get a lot of comments about how similarly sized they are.

There have been many times in the last few months when I’ve thought that this must be a little peek into what it’s like to have twins.  At least for this little period we’re in right now.  Developmentally, they are so close in age in many ways.  Not all.  Braska still has Kinlee beat with speech and language, that’s for sure.  But Kinlee is picking up words and signs faster than I can keep up.  But with gross motor, Kinlee has passed Braska by.  Kinlee can climb more efficiently, walk steadier and more quickly, she is far more balanced and solid on her feet, and she has a great deal more stamina than Braska.  With fine motor, it’s the same story.  Kinlee can manage small things, open lids, sign some things more correctly, and she can push any button she wants with great accuracy.  These are things that Braska struggles with.  Though Braska knows far more signs, she doesn’t necessarily do all the intricate finger work correctly because her little cute, stubby fingers don’t cooperate with her.

Clearly, they are very different little girls.  But for this short period, one that will probably be fading away by mid-summer, they are interested in much the same things, entertained by some of the same things, and they function very similarly in the home setting. Soon Kinlee will be enjoying her role as the leader, which she is practicing currently when she gets the chance, and Braska will be following and learning from her.  And that’s ok.  That’s not bad, in my opinion. It’s just what is.

I’m not selling Braska short, and I’m not saying Kinlee won’t learn from her later on.  I think Kinlee will always learn from Braska, and there are definitely areas where Braska will maintain her “lead” for quite some time.  But the reality of developmental delays is that at some point, the younger child will surpass the older child in some physical and cognitive realms.  We’re ok with that, because we believe Braska is exactly who she is supposed to be.  She doesn’t just “happen to have” Down syndrome, and she definitely doesn’t “suffer” from it.  She was created just as she is, and though there are some times I wish I could help her in ways that I cannot, I wouldn’t change anything about her most core qualities and design.

Comparisons can be dangerous, I know. But I am comfortable that we are enjoying this time that they are so nearly matched and we’ll celebrate them both as they grow and progress through the next stages.  We cheer Braska when she takes a bite with proper mouth and tongue position and when she closes her mouth around her straw, even if she doesn’t drink, because this is huge!  And we cheer Kinlee when she eats her whole meal by herself—veggies, meat, pasta, fruit, and all, washed down with a big cup of milk.  Different celebrations, but the same excitement for each.  We’re impressed with them both for all they do, and just because they look so similar in size right now doesn’t mean that we don’t recognize their individual needs.

It’s fun that they can share clothes. It’s fun that they both love to wear bows in their hair.  It’s fun that they both like to hold hands and walk to the car after church.  They will change, we will change, and all the elements around us will evolve as we go through life.  But for now,  it’s kind of fun having this little tiny glimpse of what it might be like to have twins.

Post titles

Just a note to the few of you who see posts on this blog primarily instead of on the blogs where they originate. (BraskaBear and JustRK)

Some blog posts will have keywords in brackets in the titles in order to facilitate search engines of a few special types finding them more easily.  So if you see weird titles, that’s why! :o)

Thanks for reading!

Wednesday, May 12, 2010

Growing up numbers

Today Miss Cathy came to see me.  She helps me make sure that I’m eating good healthy things and getting enough cal-lor-ees.  She has one of those silly scales that I have to sit on to see how big I am. 

My new numbers are bigger than I’ve ever been!  The scale said 23 pounds 4 ounces today.  And I was 33 3/4 inches tall!  Woo!  I’m getting bigger!

Mommy says I still got alot of growing to do, but it’s good that I’m trying hard.  My jeans have not been fitting me very well lately because my belly is getting smaller.  (And I don’t really have a belly anyway!)  I even had to change my pants at school today before Mommy left me for the day because my jeans wouldn’t stay up.  Ha!  I had droopy drawers, Mommy said.

Me and KiKi can wear the same pants, but KiKi is a little shorter, so I need my pants to be a little bit longer.  But when we wear our summer clothes, we can wear the same ones.  Isn’t that funny??  I need to get to working harder to grow so KiKi doesn’t get bigger than me real soon!

KiKi did her numbers today, too.  She was 21 pounds and 4 ounces.  And she is 31 inches tall.  So she’s going to catch me soon, I think.  She already has a bigger belly than me.  I think it’s funny when we’re in the bathtub to play on her belly like a drum because it’s kind of big and out there.

We’re getting bigger.  I guess that’s what we’re supposed to do.  But Mommy and Daddy are trying to get smaller, so I don’t know what’s going on with them.  Maybe they want to get little like me and KiKi because we’re so much cuter!

Thursday, May 6, 2010

Mommy report: The clock is ticking

Because Jen said I won’t have time to get an update up…I just HAD to do one in the quick time I have before they tell us she’s done.

We just walked her back to the OR.  She’ll be back in no time.  She was dancing with her daddy on the walk there.  Of course I caught the moment between giggles.

Thanks for all your well wishes…we know this is a little routine thing, but it’s always nice to have people pulling for our girl.

Wednesday, May 5, 2010

Mommy report: Bright and early

We get up with the chirping birds tomorrow and head to SLCH.  We are to report with Braska at 6:45am to the 6th floor, so that means leaving home by 6:15am.  Some of you are familiar with that area of the hospital.  We’ve not had the pleasure of procedures on that floor yet, so it’ll be new for us to be on that side of things and not just hanging out with friends while they wait for their littles.

It should be a quick and fairly uneventful morning, we hope.  I’ll be updating on here (Braska’s blog) via my phone if I don’t have time to deal with the computer.  Bear with me if things look a little odd in the process.

Prayer team: Please pray that all goes well, no hitches, no complications, smooth sailing.  She’s a tough cookie… but we don’t want her to have to hurt more than absolutely necessary.  She has had more than a few rounds with anesthesia, but each one is a new risk and challenge.  We expect no issues, but we prefer to err on the side of extra prayer! (That’s not an “err” that’s a good idea!)

In the meantime…anyone got a funny joke or embarrassing story (doesn’t have to be about YOU) they wanna share so I can pass the time while we wait?? Do share!

Windy Weekend, Part 2

On Friday, we got up and went to Aunt Karol’s house.  Me and KiKi played while Mommy and Aunt Karol worked on the computers for some neat things that we’ll tell you about later.

The big kids got home from school early, so we got to do some fun things with them.  We went on a walk to see Laynee’s hee-hee’s.  Well, we went to see them on Thursday, too, and they came right up and bumped into me and everything!!  I was really afraid of them.  And KiKi was too.  But Mommy wanted us to go back again and try to say hello to the horses again. So this time Jade took us over in a fun wagon! 

Moise has his own wheels, so he didn’t ride with us. Isn’t he handsome?! 

Me and KiKi don’t like grass, remember?  It’s itchy and it makes me very upset to touch it or walk on it.  But look at KiKi! She got out of the wagon for a little bit!

I did a little trick, though. I put my hands up and said, “Weeeee!” I was very brave!

I don’t think those horses like me as much as they liked Laynee. They looked at me kind of mean, I think.  It scared me a little…even though they were in their rooms this time.

(Mommy note: I want to make clear that Jade was NOT forcing Braska to be miserable of her own accord.  She was actually pleading for the moms to stop terrorizing the child by making her be near the animals for pictures.  Jade’s the nice one, to be sure!)

There’s also a goat there, and it was pretty scary, too.
KiKi didn’t get as scared as me, but she still wouldn’t touch it.

Then we got on the bouncy for some silly times.  Jade bounced us nice, and it was really fun!

Here’s a movie of us bouncing with Jade and Moise…

They have fun swings in the back, too, but Mommy forgot to take pictures when we were swinging.
And this is Laynee’s tree… 

More pictures coming up!  And they are very special with some fancy dresses!!

Tuesday, May 4, 2010

Mommy report: Thursday’s surgery info

I just heard from the ENT’s office.  After all the back and forth and waiting and such, the final word is that Thursday’s procedure will JUST be tubes in the ears, not tonsils or adenoids being removed.  There are a few reasons, but the main one is that he feels that it’s not fully necessary right now, that it wouldn’t really benefit her as much as we had hoped, so we’ll wait on T&*A.

Tomorrow we’ll find out the time for us to report to the hospital.  But for now, you’re up to date.

Windy Weekend, Part 3

On Saturday, we got up and went to Connor and Lucas’s house.  They’re my friends who used to live in my old town. But they moved and we moved, and now they live close to Uncle Jim’s house!

We went over there and played for a while, then we took naps.  After naps, it was time to get dressed up in my pretty dress and go back to Aunt Karol’s house.

I didn’t want to look at Mommy for pictures. She doesn’t like when I do that, but I’m not in the mood for taking pictures ALL the time!

The boys made me laugh, though. They are SO funny!

Then Mommy snuck up and got right in my face! I looked away a little just in time.  

Why was I getting dressed up???  Because Jamee was all dressed up for a big party called Prom that night.  And I thought I’d look pretty, too!

We went outside to take some pictures.  Isn’t Jamee so pretty?!

KiKi walked around all silly, but she didn’t have a fancy dress. She’s still kind of cute, though.  For a little sister, anyway.

We went to the front of the house for pictures, but I ran away!  I’m getting fast, you know!

But Jamee was fast enough to catch me and we walked down the sidewalk together for some extra pretty pictures.

Jade and KiKi were watching…they’re pretty even though they’re not all dressed up.  But don’t tell KiKi I said that. Shhhhhhh…

Jamee had a very nice necklace, so sparkly.

Then they told me that I didn’t get to go to the party with Jamee.  I love parties.  That made me sad.

BUT—I got to go see all the pretty dresses and handsome guys.  There were lots of dressed-up people, but Jamee was the prettiest one down there! 

And the big news!  Jamee got a queen crown that night!  I was already in bed, but we were so excited!  Yay Jamee!!!  I just KNEW you would get it!

Ok, almost done with pictures…last ones tomorrow!

Windy Weekend: Part 1

Remember when I told you about my long ride and showed you the silliness me and KiKi were having on the bed??  (If you forgot, you can go here.)

Well, we had a really fun weekend with lots of nice people and some new friends.  We went to Aunt Karol and Uncle Jim’s house a bunch, and it was fun every time!! They have lots of kids to play with and some great toys.  I’ve got a LOT of pictures to show you, but I’ll do it a little at a time so you don’t get too tired.

We got there on Thursday and Mommy had to get our things out of the car. Here’s what me and KiKi did when Mommy wasn’t looking.

Then we went to watch Jade run.  She is SO fast!  Uncle Jim and Aunt Karol took us right down by where she was running so I could see really good.  We said, “Go Jade!!!”  (Well, I was thinking it, but there were alot of people around that I didn’t know, so I didn’t say it loud.)  It was REALLY windy the whole time, so Jade had to work super hard to run fast.

We got to meet lots of nice people.  Most of them were brothers or sisters or cousins of somebody.  That is a really big family up there!

When the sun was going away, it got a little chilly, so I put on my warmer shirt that they gave me. This is when the wind was blowing so hard that I almost fell over.  I said, “Whoa!!”

I did lots of walking, too. I’m getting pretty good!

Me and KiKi held on to the fence and watched everyone walking around and all the kids running.    

Can you see what my shirt says???

It’s special for Laynee because she was always the best cheering girl and the prettiest girl at the running games.

We slept alot that night because we were so tired.  That always makes Mommy happy when we sleep good and don’t get her up in the night.  It was a good day!!

Come back to see more pictures and stories tomorrow, because the next day had more fun. (and a little scary parts too I think!)