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.

Friday, August 27, 2010

Braska: Good sleep

Now that I’m feeling all better after my surgee, I’m back to sleeping really good.  I even sleep on my back sometimes now. And I’ve never done that before.

See my cool shirt?  Miss Julie got it for me from Miss Amy.

Wednesday, August 18, 2010

Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

Today was the first day of school!  I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!
Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago.  He came to my house before school so we could take some pictures.
“Good morning.”

Braska: “We’re not going in the house. Pictures are outside today. You ready?”

Braska: “Come over here, and we’ll let KiKi in the picture with us.”
Jack: “What if I want to just stand here?”

Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”

Braska: “What if we kind of sit like this?  It’s what the cool kids do.”

Jack: “Ok, I’m here. What now?”
Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”

Jack: “You want cheese? I’ll give you cheese!”
Braska: “Don’t look now but he is being goofy again. No! Don’t look!”
KiKi: “He’s still pretty cute, though.”

Then we took some more pictures in the hall by our classrooms.  We’re not in the same class this year.  I don’t really like that, but at least he’s right next door.  It was really weird to go to meet new friends without Jack.

”Are we done yet?  It’s almost time for school!”

”Please, God, help me make some fun friends in there.”

”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”

”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”

Me and Jack both had good days at school.  Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days.  Then next week I get to go regular all the time!  I like my new teachers and I think my new friends are really nice too.
While Kinlee was waiting for me to get done at school, she played on the pirate ship.


She went around and around and around and kept going down the slide.

Then she found some great big balls. Almost big as her!

Here’s some little movie of Kinlee playing.  (Grandmas like these kinds of movies.)

YAY for school!!!

Monday, August 16, 2010

Mommy report: Aaaand, we’re back


After a bumpy start to the night and a few fussy times, we finally had a block of several hours of sleep.  Praise God!  This morning, Braska woke happy and ready to go.


So yes, I took pictures of her doing nothing. But it is everything just to have her feeling good enough to want to play on the bed again!


(click on the pics to make them bigger)

Saturday, August 7, 2010

Mommy life: Card campaign for Sarah and Joyce [Down syndrome, friends]

My awesome bud Jen has had a MARVELOUS idea that I’m unfortunately late getting in on with all the hospital happenings of late.

Most of you know Sarah, a very cool young lady with Down syndrome, and Joyce, her lovely mother, from My Name is Sarah (formerly Class of 2008).  Joyce is opening a new fabric store and Sarah has been super excited and helping get it all ready. This is a dream of Joyce’s, having a fabric and quilt store and a place that can employ those with various disabilities.  This Monday, 8/9, is the grand opening, and it’s also Sarah’s 21st birthday!  So how awesome would it be to flood their mailbox with best wishes for store success and birthday wishes for Miss Sarah?!?  (By the way, you don’t HAVE to know them to participate.  How fun to congratulate someone on a special event just because they will appreciate it!!)

PLEASE get a card in the mail to them asap.  I know it’s short notice.  They will be celebrating all week. If it doesn’t make it by Monday, that’s ok, but how excited will they be to see how many people took the time to share in their celebrations!  And if you’re a blogger, PLEASE post this on your blog as well.  (Feel free to copy and paste!)  These wonderful ladies have provided so much insight into their lives and the experiences that have brought them to where they are… I just love seeing Sarah get excited about things and imagine how Braska will be at her age! 

I’m printing a couple pics of the girls to put inside our card and we’re shipping them out.  Can you take a minute to send one too?

JEllen’s House of Fabric
Sarah and Joyce Ely 
5259 Mayfield Road
Lyndhurst, OH 44124

Thanks, Jen… awesome idea! What a heart you have in there, girlfriend!

Thursday, August 5, 2010

Time to go home [Down syndrome, tonsillectomy, adenoid, surgery]

A little while ago, they said I could go home.  But I had to wait for things to get all done.  So I rested on the couch a little.

Then I waited some more.  I’m tired, you know.   Very tired.

Then my super great nurse, Miss Amy, came to get me all unhooked from my cords and stuff.  She took my cover off my arm and there was all this weird tube and tape on my arm.  Maybe THAT’S why my arm hasn’t felt very good!

She started to take it off, and she did it slow and nice, but it still wasn’t much fun.

Then I had to wait just a second for her to get the rest of it.  Almost done.

Now she’s working on the hurty part.  I really really really don’t like that hurty part.

I tried not to cry as long as I could, but it just hurt too much.  But I only cried a little bit.

(This super sad face is ‘specially for Daddy and Grandma C.  You’re both a little tiny bit mean, you know it.) 

When we came home, we stopped and had lunch with Daddy since he works close to the hospital. Then we came back to our house, and I went right to sleep on the way. 

Morning with George [Down syndrome, tonsillectomy, adenoid, surgery]

I woke up and I’m still at the hospital.  I still have this big thing on my arm that makes my hand not work very good.  But I got a little sleep.  Even if I did wake Mommy up alot.  It’s not much fun to sleep in a hospital with a big thing on your arm and cords stuck to you. 

This morning I’m just going to relax a little and watch some George. He’s my favorite monkey. 

(See my pictures on my bed… this is so I can remember my sissy while I’m here.)
(And this one is so my doctors and nurses know what I look like when I’m not icky and grouchy.)

(Because this is what I look like lately.)

Mommy gave me some more milk this morning in my tube and I didn’t throw it up yet like I did yesterday, so she said that’s good.  If I can do good and keep my milk in me then I can go home later today maybe.  They keep telling me how extra special good I am.  Better than lots of other kids who have their mouth worked on like me.  But I’m cool like that.

Thanks for checking on me.  Mommy says when I decide I want to smile again she will take a picture.  It’s time for Sid. I have to go see what he’s going to learn about today.

Wednesday, August 4, 2010

Surgee day [Down syndrome, tonsillectomy, adenoidectomy, hospital]

Today Mommy’s taking me to the hospital and we’re gonna do surgee.  I’m not sure what that means, but she said she’s going to stay with me while I’m there a few days, so I’m not scared.

This morning, since KiKi and Belle are at Grammy’s, me and Mommy are just hanging around at home and getting ready to go. 

Mommy was yelling for me after I first got up, but I was already helping her take the trash out.

After we got dressed, we had some silly time in the living room while we were watching Sid the Science Kid.  I love Sid!   Mommy was talking mean to her camera because it wasn’t being nice to her.  It wasn’t taking pictures like it was s’posed to do.

I think it’s funny when Mommy talks mean to the camera.

As long as I have one of my cords to bite, I don’t really mind what the camera does. 

Have a fun day.  I’m gonna go get my bags ready.  Maybe I’ll show you pictures of my sleepover room later when I get there.

(Mommy note: We’re to report to the hospital at noon. Surgery this afternoon is to remove tonsils and adenoid.  Recovery is generally pretty rough, but we think this will help her in the long run.  Updates when we can. Prayers appreciated.)