The Third Year.

Three years ago yesterday, I got a phone call that would change our lives forever.  Three years ago yesterday, we got the results back from my quad screen test that indicated our little lady had Down syndrome.  A few weeks later, amniocentesis results in hand, the quad screen test results were confirmed.

Since then, October has become a "reflection" month for me.  A time to look back and evaluate how our lives have changed since that phone call.  A time of introspection.

On the day we found out, I felt devastated...and that word doesn't even begin to describe it.

A year later, I felt like I was on the offense--I joined several different Down syndrome advocacy groups and felt the fire to rid the world of the injustice toward people with Down syndrome.  When people would make comments about Miss B or about Down syndrome, I immediately became a mother bear, protecting my little one.

By year two, I was exhausted of being in constant "Down syndrome" mode.  And so I stepped back, and simply enjoyed my daughter and the blessing that she is...We didn't do all of the therapy-homework we were supposed to do.  I didn't read every news article about Down syndrome that came out.  I didn't talk about Down syndrome constantly.  We all just went about our daily lives.

And now, at year three--I am trying to find the balance of the two--being mother bear for people with Down syndrome when necessary, but living life just like any other family would.  As I've tried to find that balance--to walk the line of "same as everybody else, just different than most"--I have struggled.  How do I make a positive change in the world for people with Down syndrome without it consuming my life? 

The push to make the world a better place for my little Miss B has driven me to start a Down syndrome group here in The Village and surrounding towns.  As the President of this new group, I feel enthusiastic and optimistic that we can make a difference.  And I'm excited that, in our little corner of the world, I am promoting inclusion and acceptance of my little lady.  However, despite my enthusiasm, I worry about my life becoming engulfed by all things Down syndrome.  While I want Miss B to have every opportunity to have the good life; I think that part of having "the good life" means that we shouldn't always live in "special needs land" and that we need to be a family first--a regular ol' family--and a "family touched by Down syndrome" second.

At the same time, I have guilt that I haven't done enough for Miss B.  Like the other day when a friend used the R-word and I just let it go without saying anything...I felt like I was letting Miss B down.  Or when I read about all of the different therapies and reading programs and equipment and toys and foods and vitamins and experiences that are recommended for people with Down syndrome--and I know that we are only doing a small fraction of what we could be doing--I lay awake at night worrying that we are failing her.

And so three years later, I have come to the conclusion that there will always be struggles in life--things that make you worry and times when you have to push forward or pull back--and that is okay.  And I've realized that I feel so blessed to have these struggles.  I feel infinitely grateful for the growth and change and learning that takes place as we find our footing on this path in life.  I feel blessed to wake up each morning to my thoughtful husband and three beautiful children.  I feel grateful for the change that Down syndrome has brought into our lives.

And while we don't have it all figured out yet...there is no hurry, we will get there someday.

While our life is not perfect...it is good.

My Favorite Spot Is Down At The Park.

Miss B loves to watch SigningTime!  One of her favorite episodes is "My Neighborhood"...she knows all of the signs and her hands go a mile a minute when I tell her about the errands we have to run.

But when the song "Down At the Park" comes on...Miss B runs and grabs her shoes and signs "swing" and "slide" over and over again.

And then when we head to the park, the lyrics are constantly running through my head:

 (song from SigningTime! with Rachel Coleman)

My favorite spot

Is down at the park

So down to the park we go

Skate with a friend

Picnic with them

There's so much to do

Down at the park

My favorite spot

Is down at the park

So down to the park we go

Fly a new kite

Practice your bike

There's so much to do

Down at the park

Swing high, swing low

Slide fast, slide slow

Climb up, climb down

The park's my favorite place to run around

My favorite spot

Is down at the park

So down to the park we go

Play catch with a ball

Collect leaves that fall

There's so much to do

Down at the park

Swing high, swing low

Slide fast, slide slow

Climb up, climb down

The park's my favorite place to run around

My favorite spot

Is down at the park

So down to the park we go

Dig deep in the sand

Shake off your hands

There's so much to do

There's so much to see

There's so much to hear

There's so much to be

There's so much to play

Every day

There's so much for me

Down at the park

Down at the park

Down at the park

Down at the park!

Fall Travel Journal: A Perfect Ending.

Sometimes people come into your life that aren't technically related to you, but they might as well be family.

While Dr. C was working on his PhD in Nebraska, we had the privilege of getting to know some these un-related family members.  After we moved to The South, we unfortunately don't get to see them as much, but when we do see them, we pick up right where we left off.

On Wednesday night, before we all left San Antonio and headed home (us to The South, some back to Nebraska, some back to Brazil)--we had a mini-un-related-family-reunion at a fabulous brazilian grill, Fogo de Chao. 

It was a perfectly lovely evening.

These un-related family members are some of my favorite people on the planet.  An evening with them is like being home.

Thank you for the wonderful time; spending the last night of our trip with you all was the perfect ending to a fabulous vacation.

Next time, let's all meet up in Brazil.

Blog Hop And A Pile of Leaves.

I have officially failed at the 31 for 21 challenge, now that I've missed posting for two days.  I really do have good reasons for not posting...1) The internet in our hotel was down on Wednesday.  and 2) Dr. C and I were driving the 12 hours back to reality all day yesterday.  I'll try my best to finish out the rest of the month.  To make up for it though, I'm participating in a Down Syndrome Awareness BlogHop today. 

Today we were trying to tame the millions of leaves that have been having a wild party on our lawn for the past week while we were away.  So while you blog-hop, enjoy some of our leaf-hopping.

Just for Fun.

The Village has zero shopping opportunities (unless you count Wal-Mart, which I do not). 

To make up for all the times that I don't get to go shopping at home, today I ventured out into San Antonio to go shopping for as long as I wanted...no one begging me for a snack, no one needing to use the potty, no one asking me if we were finished yet. 

It was heavenly.

I picked up some cute new scarves...so I thought this video was appropriate.

Enjoy!

Fall Travel Journal: Remember the Alamo.

The thing I love about visiting historical places is trying to envision what things were like "back then". As I was standing in The Alamo this morning, I tried to envision thousands of soliders overrunning the small chapel, the men inside bravely trying to stand their ground, to defend their need for independence. My mind's eye tried to take me back, despite the modern cars and buses and small shops 20 feet away from the iconic spot.

It's hard to imagine...but I always walk away from these places grateful for my blessings; grateful that my family and I are not fighting these types of battles; and most importantly, grateful to the men and women in uniform who DO fight on my behalf so that my life is relatively calm and peaceful.

Thank you.



 My favorite quote of the day came from Davy Crockett--the frontier legend that joined the fight at the Alamo and gave it his all.  "I told the people in my district that [if re-elected] I would serve them faithfully as I had done, but if not...you may all go to h***, I will go to Texas." 

Ha!

Genetics Lesson.

In honor of Down Syndrome Awareness Month, I thought I'd share a little genetics lesson.

From the National Down Syndrome Society:

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.  

(Nondisjunction is what happened in Miss Banana.  I'd also like to emphasize the point that Miss Banana's extra genetic material comes from either Dr. C or myself...it's not an alien chromosome that came out of nowhere.  Miss B simply got an additional copy of either Dr. C or I's genetic makeup, not a separate "Down syndrome chromosome".  It is the fact that she has that extra genetic material that causes her to have Down syndrome. 

As an example...it's like she got two doses of my stubbornness and one dose of Dr. C's stubbornness...NOT one dose of my stubbornness, one dose of Dr. C's stubbornness and one dose of Down syndrome stubbornness.  Hope that makes sense! 

P.S. We don't know if it was me or Dr. C that gave her the extra chromosome.  And it doesn't matter.)

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

And now we come to the end of our little genetics lesson. 
 
Feel free to ask questions if you have any!

Fall Travel Journal: The First Day

Dr. C and I are currently enjoying our vacation (for me) and vacation conference (for him).

Our first night, we left The Village at 9:30PM and didn't get to our hotel until 2:30AM.  When Dr. C was reserving our hotel for the midway-point of our drive, I told him my only requirement was that it needed to be nice enough that I could relax and sleep in it.

No such luck.

The non-smoking room smelled like it had been housing a chain-smoker for years.

The bathroom light/fan sounded like they had a hamster up there, running (and squeaking) it's guts out to make the blades go round.

The shower water smelled disgusting...I literally gagged a few times.  And then, randomly, it started smelling like a perm.  Not much of an improvement.

The toilet made the noise I would imagine a duck being strangled and drowned would sound like.

And let's just say I refused to walk around without my flip-flops on.

I'm beginning to think that the people that write online hotel reviews have a fundamentally different set of standards than I do.

We were too tired when we got in to find something else...and knowing we'd only be there for a few hours, we crashed, woke up 5 hours later, and got the heck outta Dodge.

After another 5 hours of driving (plus a detour in Houston--a city where you can apparently see where you want to go, but there is no way to get there without driving in circles on a zillion one-way streets first.), we arrived at Sea World in San Antonio.

Maybe it's because I'm a beach person, or maybe it's some lingering tween girl thing where you love everything dolphins (or horses or butterflies or whatever-girly-type-animal-you-can-think-of) but I absolutely loved Sea World.

Loved it so much, that I told Dr. C I need to add "marine biologist" to the list of degrees that I need to get.  "Marine Animal Trainer" is currently at the top of my Coolest-Jobs-On-The-Planet list.





And "Swimming With Dolphins" has been added to my bucket list.

I would even settle for "Swimming With Whales", if the dolphin thing didn't work out.  Either way, I'd be a happy, happy lady.

There is just something so graceful and powerful about the dolphins and whales...I could sit there and watch them all day.

Shamu waving goodbye. 
Although as far as I could tell, they call ALL of the killer whales Shamu.  So this could really be Shamu the Third or Baby Shamu or really Shamu's cousin.
Your guess is as good as mine.

It was Fab-U-Lous.

And then, when we checked into our hotel for the rest of the week, we were met with valet parking, a newly renovated room with a giant flat-screen, balcony view of the San Antonio Riverwalk,  granite counter tops, and a big comfy bed with a zillion down pillows that I easily relaxed in. 

Quite the difference from the night before!

Traveling.

Another quick post.

We went to bed at 3AM this morning, got up at 8AM, drove until 3:30PM, then spent 7 hours at Sea World.  (Sorry, pictures aren't uploading right now).

Checked into our hotel at 11PM, ate dinner at midnight...and now I'm exhausted.

Longer post tomorrow and stay tuned for the newest item to be added to my bucket list.

Road Trip.

Quick post--Dr. C and I are about headed out the door for a fun road-trip/vacation without the little ones. 

I sooo need this vacation. 

San Antonio Riverwalk--Picture from Accessiblevans.com

Next time I'll be posting from the Lone Star State!

Sometimes, Kids Know Best.

Here's the Update from Miss B's big-girl bed transition.

Fearless is very protective of Miss B.  While he isn't always extra-careful with her himself, when other people are around, he is her personal bodyguard.  And if Miss B runs in the street (which is one of her fave things to do) Fearless is the first one to chase after her.  He looks after her, shares his snacks, helps her open marker lids so they can have a color-your-arms-purple party, gets her toothbrush ready at night, likes to help pick out her clothes and hairbows for the day, and always picks up an extra sticker/prize/treat for her when he gets one.  In short, he spoils her.  Don't get me wrong...they fight, just like all brothers and sisters do; but it's easy to tell Fearless has a special place in his heart for Miss B. 

(T-Man does too, but that's for a different day.)

Ok, with that background, let's go back to the bed-transition update.  Miss B has a twin bed; I put it in the corner and then put rails down the whole long side so that she wouldn't fall out.  The only open spot to possibly fall out of is the end of the bed.  And after doing the same set-up with both boys without having any problems, I was confident it would work.

Fearless knew better.

Fearless: Mom, we should put a rail at the end of the bed too.
Me: I don't think so, she would have to move around the bed A LOT to fall out all the way down there.
Fearless: But Mooooom, she could get hurt!
Me: You and T-Man never fell out the end.
Fearless: Let's get another rail.
Me (exasperated and thinking I know best and tired of the battle): Maybe next time I go to the store.
Fearless (unconvinced): um, okay.

I put Miss B to bed that night, and she was easy-peasy.  Didn't make a sound, didn't get out once, didn't cry...just went right to sleep, no problem.

At 1:34AM, I woke up to her screaming bloody murder.  In a sleepy-panicked-rush, I booked it to her new bed, only to find it empty.  With my panic level rising, I checked the end of the bed.

My poor little lady had fallen out the end, right into her empty laundry basket.  Just like Fearless had said would happen.

I would be screaming bloody murder too if I had been happily dreaming and all the sudden found myself falling into a laundry basket, wouldn't you??

Ack! What a bad-mommy moment! If I had just listened to Fearless, there wouldn't have been a problem.


Thankfully she was unhurt, just scared out of her wits.  Not that I blame her.

Back into the crib she went.

We won't be putting her in her big bed until we get another rail.

I really should have listened to Fearless.

Five Queens.

Every parent looks forward to the future of their child and has hopes and dreams for them.  All mothers want their children to be loved, successful, happy, well liked, and just an all around "good kid". 

And then we have those little "extra" dreams for them...the ones that we know aren't really important but things that we would like to see our children do.  Like not only wanting little Timmy to play football...but secretly, wanting him to be captain of the team, to score the winning touchdown, to hold the school state national record for number of yards thrown. 

We all know these kinds of dreams for our children are silly...that they don't really matter...but I can't think of a single parent that doesn't have them.

I have one of those dreams for Miss Banana.  Not only do I want her to be included in her classroom, but secretly? I want her to be popular.  I want her to have friends, boyfriends, be on the cheerleading squad, sit at the "cool" table at lunch. 

And I don't want her to be cool because she has Down syndrome, I want her to be cool just because Miss Banana is cool, extra chromosome or not. Is that expecting too much?


Is this little dream shallow of me?  Perhaps. 

But it's there.

When Miss Banana was first born, I thought there was no way that little extra-dream of mine would come true.  But after seeing Miss B rock the tests in the interpersonal relationships catagory; it's come back.  And just in the past week or so, there have been girls sporting an extra chromosome that are living that extra-dream. 

Here is Katelyn Simpson, Homecoming Queen for Northwest Rankin High School (Mississippi).

Photo taken by  Kevin Williams
Special to The Clarion-Ledger

And Emily Niedrich, Homecoming Queen for Birch Run High School (Michigan)

Photo taken by Brittney Lohmiller
The Saginaw News

And Sydney Blum, Tarkington High School (Texas).

 
And (the reaction at the end of this video is AWESOME), Mariah Slick from Azele High School (Texas)

 
Or read about Madi Sanju of Desert Hills High (Utah).  The cool thing about her story?  Her sister, also with Down syndrome, was the Homecoming Queen in 2010.
I hope that by the time Miss B gets to high school, these stories are commonplace. 
 
And that my little extra dream isn't so far-fetched after all.

10 Reasons.

If you haven't ever been to a Buddy Walk--you are seriously missing out.  The annual Buddy Walk is one of our favorite family days of the year.  They really are awesome.

Here are my 10 Reasons Buddy Walks are the best.

10.  The T-shirt.  While usually they are pretty cool and Dr. C and I wear them throughout the year with pride, this year, I think they were going more for the "get noticed" factor.  And they definitely got that right.  Dr. C and I decided that we will wear these shirts again when:

a) We decide to go for a nighttime run and all of our other clothes are missing

b) We become hunters and don't want to buy the orange vest

c) We find out someone is taking pictures from space and we want to make sure they can see us.

They did make us easy to find each other when we did a little post-Walk visit to Target.  And we easily spotted some other people that had been at the Walk too. 

9. There are plenty activities for everyone.  This year they did a carnival type thing.  The kids got to play the games as much as they wanted.  Heck, I could have played the games as much as I wanted.  Everyone is encouraged to participate however they want to.

8. All the money raised helps people with Down syndrome.  It funds scholarships for summer enrichment programs, educational seminars, family events, and more. 

 7. When a 20-something woman hops on the horse ride and yells YEEEE-HAAAWW at the top of her lungs in true wild-west style while moving at about .3 miles an hour...everyone thinks it's awesome. That cowgirl was living the moment to the fullest. 

Most of us could learn a lesson from her.

  

6. You could talk about Down syndrome the whole time...or you could not talk about it at all...and both options are completely acceptable and understood.  Our first year, I think we talked about it the whole time.  This year, I don't think it came up in conversation once.

5. When you speak in funky acronyms (AVSD, OT, ST, PT, IFSP, IEP, etc.) everyone knows what you are talking about.

4. No one is too cool, too old, or too self-conscious to have a good time. 

3. It's completely appropriate to hug everyone you meet.

2. The entertainers stay long past their original quitting time, just to make sure no one is disappointed.  

1. In a sea of 300+ individuals whose lives are somehow touched by Down syndrome, we all become "typical".  We bond together, support each other, and we celebrate the blessings that we have been given.

There are still Buddy Walks going on across the country.  To find one happening in your area, search here.

YEEE-HAAAAWWWW!!