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.

Sunday, October 26, 2008

Distraction dancer

Sunday mornings at church are Braska's special time with Daddy. She sits with him, he holds her during the music and she dances like a crazy girl when the band gets going and claps right along with everyone else. She always attracts attention from those around, and sometimes I feel like she's gonna burst with excitement. Speaking of which, we could use a bit more of that at church, couldn't we?!

Anyway, this week, like most others, she was having a ball. One lady directly behind us played with her, waved at her, and when we sat down for the sermon, she played little games with her. She'd put her hand on the back on the chair, and Braska would push it away and smile. Over and over. (I hope she is a multitasker, because it was a really great message, so I'd hate for her to have missed anything.) Braska usually falls asleep for part of the quieter parts, and then wakes at the end to dance a little more before we go. I haven't figured out a way to discreetly video this fun...but I sure want to. It's the most animated she gets, and it's no wonder people are drawn to the giggles, wiggles, and smiles. Each week after church, as we leave, we always have at least 3 or 4 people come over to mention that they were watching her and just loved seeing her dance and cuddle with Daddy. I see it as a nice way that she makes people smile on a Sunday morning.

To hold you's this Sunday's fashion pic before church. It's one of my favorite new outfit combinations. Ralph Lauren and BabyLegs with a side of Old Navy and Gymboree shoes. Can't beat it!

Saturday, October 25, 2008

Ain't it kinda funny??

We're all wanting to be good little advocates, and it is a priority of mine to put a good and real perspective of life with Down syndrome "in the house." But we're all so busy just living life with our little ones that we're too busy to talk about how we're doing it. Funny.

And I guess, as many have said better than I, that's the point. Yes, we were shocked. Yes, I thought life was (cue the dramatic movie music) *forever changed.* And yes, there have been some things to figure out, to say the least. But the beauty is, you don't have to figure it all out at once. You get to wake up just one day at a time, like everyone else. And ya know what's crazy?? Life goes on. We do what we do, and we find it to be so much beyond more enjoyable than what we thought. PLUS, we have these ridiculously cute kids to play with in the meantime!

Just wish I could bottle this and share it with all those who are a few paces behind and still freaking out. It sure would've done me some good a couple years ago.

Wednesday, October 22, 2008

So much and yet nothing

It's 11:35pm. I should be in bed. Long ago in bed. But it's not been working that way.

And I have alot I want to get in before the end of the month, blog-wise. I want to talk a little about discipline and what we do with Braska. (Yes, even our perfect little compliant child occasionally pulls a naughty one on us...and she does get in trouble when that happens.) Part of me wants to talk about politics, but I can't formulate like I want when I'm this tired by the time I get to blogging. And I'm guessing I wouldn't successfully change many, if any, minds. (If you're undecided and just want some interesting perspective to consider, send me an email if you want.) I want to talk about the great things we've learned in these 23 months of being in this club that is living with DS.

But I'm exhausted. My kitchen is so darn messy. I need to get off this computer. So for now, these things will wait. And hey, who says I can't talk about them in November anyway, right?

Tuesday, October 21, 2008

Parenting Baby Galleries

Back in September, we were happy to find out that Braska had been included in the 3rd gallery of the A Special Joy: Babies with Down Syndrome. There are now 20 galleries! 20!! How great is that!?! And we know so many of those cuties...that's pretty cool, I think!

Check out all 20 from here.

Can I just ask a favor of those of you who don't have kids with DS but have blogs? As October is Down Syndrome Awareness month, would you be willing to post a little something with the link to the gallery page? It's kind of to be expected that those of us "in the club" would be all over it, but I think it would be a neat extension of the awareness aspect if we could spread the word via non-DS related blogs as well. We like to show off our kids, sure. But it would mean alot to have those who have been impacted by our kids to put in a plug for them as well.

Thanks, really.

Friday, October 17, 2008

True Royalty times 6!

There were some great stories this past week about some wonderful teens with DS making news during homecoming season. It is so amazing to see how well these kids have made friends and made a difference in those friends' lives. The friends will be better people forever just for knowing these super cool kids.

There may even be more, but these are the ones I've heard about. (Thanks to all who sent these to me or posted about them!!)
A Queen (video here)
A Queen
A Queen
A Queen
and a KING
and another KING!

Monday, October 13, 2008


Newsflash: DS is contagious!! Keep reading!!

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, picc lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Wendy Holden

(Thanks to our great CL, Missy, at the iVillage DS board for posting this. I think it's pretty nifty!)

Sunday, October 12, 2008

Pink and Minty

I love peppermint ice cream. It's only around for the holiday season usually, so I enjoy when it shows up in the stores. Tonight I snagged some and learned a little something.

Braska loves it!

That's my girl. She ate more than 1/4 cup of the stuff, and in our world of no food orally, that's HUGE!!!! Now understand that she has these moments. She does something then won't repeat it afterwards, so we're cautious, but we're still excited. She just kept asking for more, so I kept giving it to her. We don't care much what she eats if she will eat by mouth. For now, anything is a win.

Like I say often... celebrate the little things!!

Saturday, October 11, 2008


Tonight we went to dinner with some friends. As we were waiting for them to arrive, one of the waitresses passing through the entry area stopped and talked to Braska, going on about how pretty she is (to which Braska signed "pretty" of course, compounding her cuteness). Then a few minutes later, she came back, this time with another waitress, to show her "just how pretty" this little girl was. She kind of patted her and acted like she just wanted to cuddle her, and she said, "She's sure going to be a heartbreaker one day." We agreed with her as we smiled.

Earlier this week, a woman came across the parking lot at Aldi while I was putting things in the trunk and talked to her, saying she'd seen her in the store but hadn't been able to catch up with us. She walked over a full aisle out of the way to her car to come say hello, ask her age, and comment on how well behaved she was in the store line. I thought that was nice.

We have been so fortunate in that people have always been so wonderful when we're in public. There are stories of those who have just plain ridiculous and rude things said to them about their children with DS. I always wonder what I'd say in similar situations, and who knows how it would go. But I am grateful that to this point, we've had only good experiences. People come up to use in every place we go. It's become a game to guess and then count how many people will approach us at Wal-Mart or the grocery store. All ages, men and women, lots of kids. I'm often amazed at how bold they can be. Not inappropriately, in my book, just seemingly enamored by this little girl with pigtails and glasses. She's generally kicking and dancing in the shopping cart, because she just LOVES being in one. I can see how she would garner some attention. I'm just glad that those who would say dumb or unpleasant things have not done so within earshot.

As far as I can remember right now, only one of these encounters has been with someone who had a child or relative with DS. The rest were just people commenting on her glasses or being cute or behaving in various situations. (She is really unbelievably good in public situations. We're blessed!!) I realize it may not always be this way, but for now, we are so grateful to be able to make alot of people smile. And I have found that I enjoy mentioning, when it comes up, that she has Down syndrome. At that point, no one has said, "I'm sorry." No one has put on a sad face. They just smile and say, "Really??" with surprise. I love to see a new bit of perspective come to so many faces. Like their 3 minutes of waving and talking to Braska has somehow imprinted a new realization or possibility in their minds. And THAT is worth everything.

Monday, October 6, 2008

Why EVERY life matters

Karen K sent me a link to a blog today. I get links to blogs from friends alot. Blogs that are funny. Cute kid blogs. DS blogs. Blogs with good music. Lots of blogs. Many of them, though, are stories of amazing families who are making the most of a difficult situation.

This blog Karen sent today is much the same as some others. The tragic story, some might say, and the strong people who are living through it. Tomorrow, this very young couple is going to meet the son they've been waiting for and loving intensely for a long time. But it will be bittersweet as they know his time with them will be most painfully short.

But here's what struck me... This story reminded me of why every single life matters. Even though this little boy will have such a short time on earth when he is visible and touchable and breathing air, he has made a difference that will NEVER be undone or forgotten in hundreds of lives. His parents' decision to grant their son life for as far as they can control it has impacted SO many people, even the doctors, nurses, and staff that have walked with them through this journey. We will likely never know how far the ripples of their decision and committment to their son will go, but people who are changed tend to promote change in those around them, and it continues, and the world is changed in the process.

This is one reason why I am heartbroken when I hear of someone receiving a prenatal diagnosis of any number of types and choosing to abort "for the sake of the baby." That life has a purpose. It belongs to a child whose existence is no accident. There is a specific reason why that baby is given, though we may struggle hard with the details of the "why" sometimes. This family was talked to about "terminating," but they knew they could not. The end result may be the same, but this child will rest in loving arms as his parents are able to cuddle him for the short time he has. His parents know this will be horribly painful, but they are doing what parents should do at every opportunity, putting the best interest of their child ahead of their own comfort or convenience.

I want to say so much more, but it's getting jumbled and poor, so I will simply say this...we may never know how our faithfulness in difficult situations affects others, but it is clear that it does. This family does not know me at all, but simply spending a couple of hours learning about their family and the struggle for their son's life has made an impression on me that will remain. Now I'm telling you, and hopefully you will find the same. Baby Isaac has made a difference, and he is just tomorrow getting to be held by his parents for the first time. His life matters.

The blog is He Will Carry Me and it is worth the time to read their story and their phenomenal example of truly trusting God with their most precious one. Many of you will identify with different parts of their story. A most touching aspect is the Dear Isaac compilation of letters to the boy from his mother. Even in a sad time, there is encouragment and hope. Real hope. I don't find this depressing at all. It is sad, absolutely. But it's that HOPE and trust that makes the difference.

Please join me in praying for this family as they take these next steps through tomorrow and whatever it may hold for them. I believe that we are shown things when we need to see them... there is a reason Karen sent this to me, and there is a reason I felt so compelled to share it with you. Don't miss out on the blessing this could be for you, now or down the road.

And hug your little ones an extra time today. Or two.

Sunday, October 5, 2008

Taking notice

Just another word about last night's dinner. When we were leaving the restaurant, there were alot of people waiting by the door to be seated. Over to the left was a young lady who I only caught a glance of as we passed by and dodged other people. M asked to me as we turned the corner into the airlock/entryway, "Did you see her?" I knew what he meant and said I did. I asked if she'd reacted to Braska, and he stepped back to a window between the airlock and the waiting area to try to wave with Braska, but there were too many people between.

Big deal? Yeah, maybe. But I've found it quite interesting that adults with DS, especially when with their parents, are so happy to see Braska (and us too) and they love to say hello. I am not bothered by it at all. We've had no odd situations, just really great people who have wanted to meet our little princess or simply connect with someone under that invisible umbrella that is DS. I'm always a bit amazed that they can pick her out of a crowd. Granted, I don't see the DS anymore. I mean, sometimes it's clearer than others in her face, but most of the time, I look at her and just can't find it, even when I try. I think the glasses help alot, just kind of a distraction of sorts for people. We've found that to be true, but it's not at all that we're trying to hide her. It's just always neat to me that from across a crowded room, this young lady spotted Braska and just beamed while she watched us walk by. There were a couple other kids around, but she was totally zoned in on Braska.

I wish we'd have had the chance to go back and say hello or something. I don't know how that would have gone exactly, but had I noticed her sooner, and the crowded thing not have been a problem, I would have stopped for Braska to wave, for sure. I actually had to ask M if he was sure that the young lady had DS. He said yes, but he had to look twice too. That's cool, I think. Not that we wonder, but that previous to having Braska, I wouldn't have believed that I'd ever *not* notice someone with DS, that they would seem "normal" enough to blend in. We've come a long way, and I'm enjoying the journey.

Saturday, October 4, 2008

Middle of a long day

It's 3:45p, we've been home about 35 minutes. My feet hurt and I'm sore in unfortunate and inconvenient places. BUT the garage sale went pretty well, as they go.

Oh yeah, before I forget ... 11 years ago today, my husband (then someone I'd never met and only had talked to online for 6 days) drove over 28 hours from Montana to Missouri because he "just had" to meet me... time flies. Here's the rest of the story if you missed it last year.

We ended up with a TON of stuff... big stuff, little stuff, junk, real finds, and alot of it sold. Overall, the sale brought in close to $2000 total, most of that going to the brother-in-law who had the furniture and bigger ticket items, but the parents-in-law did awful darn good with their ridiculous tons of DVDs that were a big hit. Me and M did ok, as things go. I think we came home with just shy of $100, plus a car seat for Braska to use for the next 2 years (at least) in Daddy's car as a back-up and the toy that she has been loving that we've borrowed from the PT. I walked up the driveway this morning at 6:30am and couldn't believe it was sitting there. So I snagged it up quickly. Both of these were Trevor's, a friend from the in-laws' church. She and one of her friends had a sale last week, and I got a crazy good bargain on a double stroller. (I've been in denial about needing one... but I dealt with it, and now we have one.)

We had alot of traffic through there, especially for a sale this late in the year. I think it was a success. And not as unpleasant as I thought it might be. It makes a HUGE difference when most of what is there is GOOD stuff, and not just the junk we don't want. Whoda thunk it??

Now I'm trying to rest my feet for a moment, but soon it's shower time for the second time today as we get ready to head to dinner with a couple we've never met. Should be fun. M met him online at a tech-guy kind of web forum... they decided to let the wives come along too. Then, it will be BEDTIME!!! Can't wait...

Thursday, October 2, 2008

Off to a great start

Braska was up at 3am in the oh-so-frustrating way she does on rare occasions, sitting up and crying in her crib. After a few tries of rocking til she was asleep and then putting her back in bed, only for her to pop up right away saying "up! up!", she went back to bed with me. As I've mentioned before, I'm not at ALL a fan of kids sleeping in the parents' bed. But when the two options are for me to sit and rock her while she sleeps or to lie down and at least rest while she sleeps, I go for the horizontal position.

She wasn't snoring, so that was an improvement over the congestion issues of a few weeks ago, but I still can't sleep at all when she's right there. I hear every sound, feel every quiver or kick, and it means no sleep for as long as she's there. I managed to get comfortable for a while, but it was short lived as I was on about 10 inches at the edge of our lovely king-sized bed. In my state of aches and pains, with Pepino constantly telling me that she is not happy with my position, this was not a most pleasant few hours, to say the least. But we made it until about 7:20am when M got up for work. Of course, Miss Slept Well While Mommy Didn't was happy, giggling, and ready to play, while I was a tad on the grouchy side.

We got up about 7:45am when her pleas to "get up" were finally heeded, and we started the day. Now it's 9:30 am, and I've changed her twice for massive puking episodes (we call them full-feed, because it's soon after her feeding and it sure looks like the whole 6 oz.), once for excessive diaper mess, and changed me once for her wetting on me while I was trying to whisk her to the tub. There are 6 wet spots on the carpet from puke/spit-up and the carpet cleaner that was added to try to help. We have two therapies scheduled today, ST this morning, and PT this afternoon. Napping is tricky on Thursdays with that schedule, so I've cancelled them for today due to her iffy situation and my lack of sleep and impatience with generally everything.

I'm sure it's just a fluke. She's not really acting sick. I think she might be working on another tooth or two. Whatever it is, it's not the way I like to start a day.

To end on a good's so nice and cool outside, that's nice.

Darn, she just melted into a crying puddle again. For a girl who doesn't cry more than a couple times a month, normally, this is disturbing..... Happy Thursday.

Wednesday, October 1, 2008

When did October get here?!?

Ok, I get Right. It's the 1st. But still. How did that happen?!?

Maybe it's because the last 5 months have been just about the busiest of my life so far, but this summer just plain flew. But it's ok. Fall is my favorite. I love the cool weather, the faint smell of fireplaces starting to float through the air, the changing colors (which we'll get to see more of here in MO than back in IL), and the comfy clothes that allow for hiding things. Bring it on!

What does October have in store? Of course, it's Down Syndrome Awareness Month, don't forget. Hmmmmm...what else? Well, we'll celebrate the 11th anniversary of my meeting M and being swept off my feet (give or take a trip and fall here and there...ha!), a family yard sale, there's my brother's 32nd birthday, the (hopefully) confirmation of Pepino's gender, my 35th birthday (what??????), Braska's last month-birthday before she's 2, and my mother-in-law's birthday. Oh, and Halloween. Then there's 2 doctor appointments for me, 2 for Braska, and 17 therapy appointments. I'm sure there are a bunch more fun events....we'll see as we go.

Welcome October!