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.
Showing posts with label DS friends. Show all posts
Showing posts with label DS friends. Show all posts

Sunday, March 20, 2011

World Down Syndrome Day 2011

3-21-2011 
For 3 copies of the 21st chromosome, unique to Down syndrome. In my opinion, creating some of the cutest of the cute out there. Don’t miss the video below.

World Down Syndrome Day.

wdsd_logo_550

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.  If Braska is the only person with DS that you know, be sure to brag on her a bit today. I don’t mind at all!  Feel free to link to the recent post about how far she has come since her heart surgery 4 years ago.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone. 

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her.  Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

Thursday, February 10, 2011

Mommy life: A peek at the future

Maybe it’s because music is part of my core nature, maybe it’s because I have a daughter with Down syndrome, or maybe it’s because it’s just an inspiring story.  No matter why it caught my attention, I’m glad it did.  (Thanks Ria for posting!)

It’s really short…take a look.  I just LOVE seeing girls about this age who are just living life. Who knows where Braska will be and what she’ll want to do, but it’s fun to think about her in an opportunity like this.

(video embedded below)

I couldn’t quit focusing on her speech and articulation… so good.

Now if only we could commute to that class once a week…

Saturday, November 13, 2010

She’s Dashlyn Now! [Down syndrome, international adoption, Reece’s Rainbow]

Remember how we have been waiting for Jack’s new little sister to come home?  Well she’s not home yet, but very soon!  Miss Julie and Mr. Allan got to go over to where she lives and meet her, and the people there said she is all theirs now!  So her real name is Dashlyn now!  Isn’t that exciting?!? 

dashlyn-introHDRimage

Isn’t she just the prettiest little poonchin!?!

She’s gonna be my new BFF, and I can’t wait until she can come play at my house.  Mommy says she is gonna be part of my Christmas present this year, and I think that is the best present ever!  I’m gonna show her how to do her hair pretty with bows and how to say funny things and how to wear the cutest little outfits and how to walk like a big girl.  I know about that stuff, you know.  We’re going to have SO much fun! 

Go over to her blog and see lots more pictures and read the stories about her playtimes with her new mommy and daddy.

Sunday, October 3, 2010

Me ‘n Jack: After school pictures

Me and Jack aren’t in the same class this year, but our classrooms are just next door. Sometimes we get to see each other on the playground, and we always get excited about that!  Our teachers things it’s pretty funny.

But even though we’re not in the same class, we still like to do our cute outfits together sometimes.  Or at least our mommies like that.  And as long as we’re cute, it’s ok with us.

So after school a few weeks ago, we stopped for some pictures by our cars.

”We will stand here, but no one says we’ll smile.”


”Hold it in, Jack.  Don’t giggle! I think I’m gonna laugh!”


”Ok, maybe Jack’s too silly not to smile! And me too!” 

“That’s it! All done with pictures, Mommy.”

Saturday, October 2, 2010

Braska: More pictures from my friend visits

Remember back when I had a party weekend with lots of friends and lots of parties? 

Well I have some more pictures to show you from then.

Me and Jack stood in the picture place (by the door) for our pictures.  We have matching clothes and he’s cute. But I think I win, don’t you? 


Madelyn helped me decide what we would get at the dinner place.  She’s Jack’s big sister, and she is fun to play with.
braskamaddie


On Sunday, we went to church with friends too.  Or they went with us really.  Jack and Nichole even got to go to my class with me!  It was great!


One night, Ellie, Nichole, and Nina came over to my house.  And Jack came too.  We watched Signing Time all together while mommies and daddies talked about stuff.  Nichole is REALLY good at her signs! 

Friday, October 1, 2010

Braska: It’s time for my month again!

I suppose maybe it’s not my month, but it’s the month when we get to talk a whole lot about some of what makes me “extra special” as Mommy says.

It’s Down syndrome awareness month!  Are you aware?

My friend Georgia’s mommy does this really neat thing for our month (It’s Georgia’s month, too, ya know.)  You can read about it if you click on the cool little button right down there.  Like under this.  See it? 


Grab This Button

Mommy helped Miss Tricia get the button ready, and everyone has it on their blogs so other people can know about our month!  Isn’t that great?

So I’m gonna put things up every day, as much as I can, and most of it will be pictures with little stories.  Because even though I am “extra special,”  I do regular stuff every day that somebody might want to see.

It’s gonna be a great month!

Saturday, September 18, 2010

Braska: Party weekend pictures

I can’t believe I forgot to show you more pictures of my fun weekend with all my new friends!!

On Friday night we played at Jack’s grandma’s house.  We were having so much fun that we didn’t really want to stop to take pictures with our mommies.
frinightgroup1

We had neat shirts that we wore, too.  So everyone could tell that we were all together.  Me and Jack wear matching stuff sometimes, but we even let KiKi have one too!
trio1


Saturday morning we went to a different church than ours and played with some fun stuff.  First we played in a room with toys.  Russell was showing me how to put the cars on this one. They went really fast! 


Miss Julie played with Micah. He’s from a place far away that has a really icky football team called Packers.  I say NO Pack, Go Bears!!  But I still like Micah cause he’s super cute and really funny!
juliemicah1

We also got to play on this BIG playground inside the church!  It was SOOOO fun!
playground

See me up in there with Daddy?  I just love to climb, so I played in there the whole time!


Here’s a picture of us after we played.  Some of my friends had already gone home, but this is most of us.  I’m so glad they all got to come and play!
 

More pictures soon!

Thursday, September 2, 2010

Braska: Parties and more parties

When you go someplace, or when people come to your house, and there’s lots of friends and fun stuff, it’s called a party.  And tomorrow and the next day AND the next day we’re going to have a bunch of parties!  There’s a bunch of my blog friends and Mommy’s mommy friends who are coming to our town to play together all weekend.  (I think there’s some daddies, too, but a few of them might like to go to ball games more than play with us.)

It’s going to be LOTS of fun!  And I’ll show you some pictures while we’re playing, and then we’ll have a whole bunch when it is all done.

Here’s what we’re all going to be wearing… shirts with this on them.
STC2010-closeup

Don’t forget to come back and see pictures of all my friends!!  Have a happy weekend!  I know I will!

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!!!

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!

Tuesday, July 6, 2010

Comparing comparisons [Down syndrome, siblings]

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to.  Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

______________________________________________

Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months. 

It scares me how fast V is learning and reaching milestones.  I am ashamed that I even compare them at all.  It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
_______________________________

My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently.  Funny that you happened to write today.  I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months.  The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is.  Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old.  It’s fun to me, not to Braska’s insult, but just because I enjoy their differences.  I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue.  It surprised me, but I’ve had to deal with it a little more than I expected.  You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months.  Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.”  Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point.  Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone.  We know this, we knew this would happen, and it was ok.  I’m not too bothered by the walking issue.  BUT in the past couple months, Kinlee has taken off in her speech and language.  This is Braska’s STRENGTH!  Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her.  We work with her, but it is clearly a natural strength of hers.  With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s.  And that was hard for me.  I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there?  She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice.  She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can.  It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well.  How to live in both of those worlds?!?

I never expected this to be a concern for me.  We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds.  And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on.  What to do about it?  I don’t know.  I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child.  And I love that about her.  Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect. 

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result.  It’s been amazing to watch Kinlee surprise us over and over.  Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!”  And she was right.  They were hamburger buns.  Something we NEVER have in the house.  I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!?  And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through!    I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely!  Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place.  Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it.  Not that it’s perfect, but she gets it.  Amazing!  We often refer to Kinlee as the “superhero” of the family.  But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better?   Nope, not at all.  I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of.  I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that.  There is no pretense to her, she doesn’t try to be what she’s not.  She’s 3, she’s a girly girl,  and that’s all that’s there.  And I like it that way. 

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat.  I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years.  It’s amazing how similar our stories are, and yet how we each handle it with our own style.  If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well.  Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment.  I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after.  Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

_____________________________

How would YOU answer the question??

Friday, June 4, 2010

Braska: Dashlyn’s sale day! [Down syndrome, adoption]

Tomorrow is a big day at our house.  Miss Julie and Mr. Allan are going to get Jack’s new little sister and my new friend Dashlyn very soon, I hope.  So we’re having a big sale in our yard tomorrow to help them have enough money to go get her.  Mommy told all about it over here.  If you live around where we live in St. Louis, you should come!!! I’d like to get to see lots of people I know!

dashlynbutton1-tiny

Tuesday, June 1, 2010

Braska: Last school day, for now [Down syndrome, preschool]

Thursday was a big day for me.  It was the last day of school for a while.  And it was the last day with Miss Natalie and Miss Sue.  They are my favorite teachers, so I wish they could just always go to school with me.

Before school, we took some pictures… you probably figured out by now that Mommy ALWAYS takes pictures. 


Mommy says this is my Sincess Kennedy smile.  It makes her think of my friend Kennedy when I make this cute face.


Then we went to school.  This is my classroom.


When we first get there every day, we have to wash hands. First we turn on the water.

Then we get soap and wash wash wash! I love looking in the mirror, and Mommy tries to get me to look at my hands so I can do a good job.  But it’s way more fun to make silly faces in the mirror!


After we turn the water off, then we get a towel.  We pull on the handle 1, 2, 3, and then we stop.  We tear it off and dry our hands.  Then it goes in the trash.


Then we can get our nametag off the table and go play.  Well, after we match our picture on the board with our name.  But I just like to go play!


When it’s almost time to go home, I get to sit in this little chair when we all sit around on the floor and listen to a story and sing some songs.  I like to sit in it even when we’re not singing or reading.
 
When it’s time to go, we all get our backpacks and sit at the table.  Jack is sitting like a good boy at the table waiting for his mom.


Here’s me and Jack with Miss Natalie.  She is our teacher.  We like her a lot!


This is Miss Sue, and she helped me a lot when I wasn’t big enough to walk yet.  She is SO nice!


I gave Miss Sue some extra hugs while we were getting ready to go.

It was a pretty exciting day.  Now I have a few weeks to do other stuff with Jack before I go back for Summer School!  I can’t wait! I love school!

Saturday, May 29, 2010

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

jackbraska-ellagrace

(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!)