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, January 24, 2009

Only a LITTLE late!!

So I might be over a year behind in things, but still...better late than never!!!

I found this digiscrap layout online yesterday at Wanderlust Designs, and threw in some cute pics from each month of Braska's first year. So I thought I'd share...maybe it's a bit of nostalgia for me as I prepare for the next "first year" to begin around here soon.

Click on the picture to make it bigger...if you want a better peek at the little pics.

Simple sleeping pleasures

Friday, January 23, 2009

Braska: Funny words and more walking

Miss J came on Tuesday to see me. We worked on talking about things and asking for things. She brought bubbles again, and I really like bubbles! She asks me what I want, and I like to just tell her the last thing she says. She wants me to pick things, but I just like to say everything that she does! She says we'll keep working on it. But the bubbles! So much fun!

Mommy and Daddy think I'm funny because I've been saying, "Oh yeah!" about alot of things. Here's a little short movie to show you, and it also shows a couple other of my favorite things... cow and horse sounds!

Yesterday, my PT came to see me. We practiced my walking again, and I'm having alot of fun doing it! So last night Mommy and I showed Daddy how good I'm getting. I just wanted to do it over and over. I really like my walker!

(You might want to turn your sound down a little...Mommy gets kind of excited and goofy!)

Pretty soon I'm gonna be going all by myself!

Monday, January 19, 2009

Braska: Walkin', babies, and lookin' good

I've been doing more practice with my walker. I like it alot! I even go and tell Mommy that I want to take walks. I tell her "Wa-wa-walk!" But sometimes my PT makes me do it more than I want. Mommy says it's her job and it helps me, but I give her sassy looks anyway. This was from when she came on Thursday.

Here's a movie of me practicing with Daddy. It's a little dark because it was close to bedtime.

I still don't like to sit in my Elmo chair alot, but I do like it to be right next to me. Mommy thinks I'm silly. I just like to sit by him while I'm watching my shows.

Saturday morning we had to get ready for going out and I had a quick bath. I found a little mirror in the tub that I never noticed before. Maybe Mommy will get me a bigger one.

We got dressed and ready. I got to wear a new jacket that my friend Larkin passed on to me after Sophie was too big for it. Thanks Larkin and Sophie!

We went to Auntie Janice's baby shower, or I guess it was really for Baby Xander who will be here soon, next month right after Kinlee's coming. Xander is so lucky! He got a whole bunch of cool stuff!
Shay even got neat presents, too. She's gonna be a big sister like me. Miss Cheryl helped her with her things. Her favorite was an Ariel doll. She LOVES Ariel!

I didn't get a nap before, so I fell asleep and took a long nap while everyone was eating and playing games. It was comfy!

On Sunday, I got to wear a dress that I got last year. I finally got big enough for it! It's pink and soft with little sparkly snowflakes. It even matched my BabyLegs, and they kept me toasty warm for church.

Friday, January 9, 2009

Braska: Getting ready for Idol!

Here at our house we always watch American Idol from the beginning to the end. I like all the music, and Mommy and Daddy like to make guesses on who will win. I love to sing and listen to songs and Mommy has been singing songs to me since I was a tiny baby, so we do songs every day. We're getting ready for Idol to start soon, so we've been singing extra!

Last night, I thought I would do my first movie of singing time. I was in a pretty silly mood and didn't want to be still, but Mommy thought I should let you see anyway.

This is the song I know the best, Jesus Loves Me, but it's not my best showing of it, that's for sure.

And this is my favorite song from my FAVORITE show... Blue's Clues!!! Usually I can say Blue's Clues really nice and show the hands like Steve does, but I didn't feel like it when Mommy got the camera out. But the Mail song is always fun! (Mommy even got a word wrong but I knew my part!)

Princess Eliana

We have about 40+ blogs that we keep up with for kids and families with DS. I often say that the blogs have been our lifeline, and I have most definitely learned more from them than any medical or "official" site. So many of you have become like "real" friends, and it feels like we just never get to really hang out! I appreciate all the emails and behind the blog stuff that we share with so many of you... that makes my days brighter every single time.

I could list all the adorable kids who make me smile and it could go for days... but today I want to pick out one little gem. Miss Eliana is a princess who has traveled much the same road as Braska, and her mom Leslie is a marvelous example of a great mother and a kind and caring friend, it's clear. Eliana was born about a month after Braska, she had similar heart issues, she had a G-tube for a while, but she has blossomed into just an absolute doll who is wowing lots of people and especially her family who adores her.

Yesterday, Leslie posted a couple of pics, both are beautiful, but one of which just stole my heart. It captures what I imagine is Eliana's wonderful personality and obvious spunk. Even though I've never had the pleasure of meeting them in person, I really am thankful for the influence they've been on me in the logistics of the things we've been through and the encouragement it is to watch Eliana do so well.

Take a minute and go see Princess Eliana. She is one very special gift from God. And please give your little ones a hug for us too... we wouldn't be nearly as sane without all of you blogging buddies!!

Tuesday, January 6, 2009

Braska: Fun day at school!

Mommy told you that she took me to school yesterday. But I wanted to show you a few more things. It was so fun!! I wish I could take pictures of my class, but they don't like us to do that. That's sad, I think, but it's ok.

My teacher is Miss A, and she is really nice. We played with music and sang songs in the circle. I even had my own chair! I sat next to my new friend Z. She's a little bit older, but she's still 2. We went to the romper room, that's great big room where they have great big toys and lots of room to run and climb and play. Miss A told Mommy all about how I tried to get up on the big stuff, and how the teachers helped me walk on the balance beam since I was trying to do it.

We made pictures, and I brought mine home to show Belle. Miss A helped, but I did some of it too.

I told Mommy all about school on the way home. I just kept talking and laughing all the way in the car, but I don't think she always knew what I was saying. I was just so excited! I wanna go back again, but Mommy says I only get to go one time each week for now. When I turn 3, I'll get to go more. I can't wait!

I had my milk for lunch and then I was tired quick. School is fun but it wore me out!

Monday, January 5, 2009

Pre-preschool dropoff:Day 1

Today Braska went to "school" for the first time. It's called Kiddin' Around and it's all 2-year-olds with varying developmental delays or need for early intervention. I call it pre-preschool since it's getting ready for the next level that she starts when she turns 3. I dropped her off about an hour ago. She seemed excited, and she didn't seem to be the least bit worried about where I was or was going, so I stayed for a few minutes while the other kids arrived and then left. Seemed a little weird, but I'm sure she'll love it. It's one morning a week for 2 hours, so that's not bad.

This was my attempt at a picture of her first school day outfit. Forgot to turn off Sesame Street though. Check out that snazzy shirt, Amy/Jen! :o)

(Just for an interesting perspective on this kid's weird sizing issues... She's 25 months old. That's a 9 month shirt, 24 month "skinny" jeans with the adjustable waist cinched to the max, and size 3 shoes that are still PLENTY big. Oh, and underneath is a 9 month onesie. She could wear 9-12 month jeans since they fit around her waist but they're too short. These are a little long still, but better than short in the winter. Eventually she'll even out...maybe.)

When she got to her room, we were the first ones there. She liked the little chairs and one of the aides brought her a toy. Anything that she can make noise with is a winner. She kept hitting the orange key...that's my color coordinated girl!

I'll go get her in another hour. I'm sure she'll be happy to tell you all about it soon. We missed Jack, since he didn't get to go today. She'll love it even more when he's there too, I'm sure.

Friday, January 2, 2009

Counting My Blessings: 2008

To counteract the deep and vague elements of the grouchy post...time for gratefulness!

I'm surprised I haven't done more posts about the things I'm grateful for. Obviously, it's my blog, I'm the only one to blame. And I'm generally all about being grateful, saying "thank you," showing appreciation for thoughtful gestures and I'm not sure what my issue is forgetting to include that in my blog life. Ah well, no need for excuses. Just fix it!

So here's a smattering of things that I feel like are highlights of 2008 and just a few of the blessings that we are so very grateful for. God is, as always, very good to us.

(Just a side note: God is good no matter how blessed we feel. He is good when we are miserable. He is good when things are very bad in our estimation. He is good no matter what. He doesn't change. How we view our circumstances and what we choose to do with our opportunities changes. But he is always good and doing what is best for us. Just want to be clear. :o)

~~ I'm so very thankful that 2008 was the first full year in a new era of our lives and our marriage. A difficult period is behind us. We'll not become complacent or think that we're "safe." We will continue to be vigilant and purposeful about what's important, and we will not forget what we've learned. But, wow... it's nice to have a clean year under our belts.

~~Braska has had a surgery-free and healthy year. Well, there was that small granulation tissue removal in January. Technically that was a surgery. But it was 8 minutes, people.... I don't really count that. She's been well all year, up until December, of course. But as kids and sicknesses go, we have been WAY fortunate. She's 2 and has never had an ear infection. She's had a sinus infection twice this fall, and that's all. What kid, DS or not, is as non-sick as this girl?? Very few, and for that we are very thankful!

~~We had a big year with big changes....and we have survived! May was pure chaos with deciding to see what jobs were available here in StL, finding a couple possibilities, scheduling interviews, dealing with offers, accepting one, packing the house, listing the house for sale, finding an apartment, and moving. ALL IN LESS THAN 3 WEEKS!!! I can't believe we got through it all. We wouldn't have been able to do it without ALOT of help from family, friends, coworkers, and even a few people we barely knew. Oh yeah, and apparently I managed to get pregnant that month too. Wow. It's still amazing to me that everything worked out as it did. God made all the pieces fall together in the right way, even though we didn't always agree with his timing, he was right...surprise, surprise! And we sold our house in 28 days. That's just plain cool!

~~I am so VERY thankful that my husband has accepted, adjusted, and actually been helpful in working through all these changes this year. He's not a fan of change. He's not a fan of the city. He was not at all excited about leaving C-U after he'd been there for 10 years. It had really become his home even more than mine, and yet he made a big move for the sake of Braska's care and my sanity in not having to make those long drives so often. He was extremely well known and well loved at his job, as was clear by the outpouring of support when he put in his notice. It is no small thing, and I've probably not been as clearly appreciative as deserved. This move has been smooth in some ways, enough to show us without a doubt that it was the right move for our family, but yet it's also been difficult as we've struggled to connect and kind of find our new place to be... and to be comfortable. We'll get there, but so far, M's been pretty great about the whole thing. And I know good and well how much it's stretched his patience and his comfort zone.

~~Along those same lines, it is a very big deal that we've survived this long on our new and decreased income. We're still finding ways to cut back, and we still will need to find more as the months come and we add another little mouth to the family. I'm constantly aware of what a significant thing it is that M has supported us completely for the first time in our marriage. And that he allows me to stay home with Braska, no longer contributing to the family income, even when we're finding ourselves living on a five-figure income that begins with a couple of 3's. I never thought we'd be in this position, but we're doing it, and I am hugely grateful that he's not making me feel less-than because of our new roles. Even though it's smaller, we have a great place to live, and we've adjusted well to it, I think. We have great cars, warm beds, food to eat, and have been able to avoid credit card debt throughout. God has provided everything we need, through people around us, wisdom to make good financial choices, and a stable job for M. There are SO many people who have less, and we are thankful for every last thing we have. We want to make the best use of every resource, because no matter what we have, we're responsible for being good stewards of it.

~~Lastly, for now, I'm thankful for all of YOU. Yep, the readers who keep coming back, or just pop in here and there. It's so encouraging to know there are people who have no obligation to me or to us yet you choose to keep up with what's going on with us. You offer words of cheer when we celebrate, you offer words of encouragement when we're frustrated, and you offer a highlight to my days just by coming by to say hello. I tell people often when they ask about how we've adjusted to life with Down syndrome that a big--probably the biggest--part of our sanity has come from what we've learned and how we've come to know so many great people through this big, wide inter-web. I love watching all your families grow, learning from your trials and successes, and just knowing that there are so many friends out there who are just living life to the best of their ability like we are. Thank you for sharing in our lives and for sharing yours with us.

I live in a great country, serve a mighty and gracious God, and wake up every morning with the opportunity to start fresh again. What's not to be thankful for???

I hope you have had a wonderful year. I hope you'll take the time to look specifically for things to be appreciative of as we move into the new year. Many blessings to your families as we jump into the excitement that is 2009.