Dear President Obama,

Congratulations, President Obama! Receiving the Nobel Peace Prize is an incredible honor!

You see, I had my DVR set to tape the Early Show on CBS this morning. However, it's wasn't set to tape you. (No offense Mr. President.) I was actually waiting to see a story in which my daughter's picture may appear. Though she may someday receive the Nobel Peace Prize, her story had nothing to do with your award. It was actually a story about capes.

Yes, that's right. Capes.

I have been waiting for a story to air. Every time I hear that it's going to air, I send out messages to all of our friends and family, asking them to watch.

And each time, something comes up. And the story is bumped.

Now, I do agree whole-heartedly that you winning the Nobel Peace Prize is definitely newsworthy. Much more newsworthy than recent stories about... well, I won't get into that.

However, many people are excited to see this story about capes.

So, just a quick favor... something that would take just a moment of your time -- I think you could squeeze it in, say, between your speech about the Nobel Peace Prize, and your flight to Ghana to save starving children.

Can you pull some strings at The Early Show and see if our story could run tomorrow? Or even next week sometime? I would really appreciate it -- as would my family and friends, who by now must be thinking that there really is no story about capes, and that I'm just fooling them all.

Again, congrats Mr. President. And thanks in advance for the favor.

Sincerely,

Finally!

Remember when I shared with you the story of the Comfort Capes?

Then, remember when I told you the airing of it on The Early Show was postponed?

Yes, it's all coming back to you, isn't it...

THEN, remember when I told you it still hadn't been scheduled to air?

Well, the time is here!

Tomorrow morning unless something especially urgent to share with the American public comes up, like a pro-golfer's mother-in-law being hospitalized for stomach pains the story is scheduled to air!

Thursday, December 10

The Early Show (CBS)

Show runs from 7 am to 9 am

Story slotted to run between 8:30 and 9 am

Watch closely.... we are told we'll see this cutie!

Wordless Wednesday

Untitled

We promote literacy with everyone in our house.

Vocabulary Mix-Up

Carter is working on some fabulous new art. He often says that white crayons are "broken" because, naturally, on white paper, they cannot be seen.

This morning I brought out some black paper and, much to his surprise, white crayons work! I showed him how to draw some snowflakes, and he was off drawing like crazy. (Nothing that resembled snowflakes, but that's not the point.)

Anyway, I left him to work on his masterpiece, and a few minutes later he came running to me with his paper.

"Mom! Look!"

Looking at his paper, it was obvious that he had sneezed. Splatters of... well, I'll just leave it at that since some of you may eat breakfast late.

I said, "Oh Carter, what happened?" (One of those silly questions Moms ask when they, of course, being smart Moms... already knows the answer to.)

"I bless-you'd on my paper!"

*smile and little chuckle inside*

"You 'sneezed' on your paper?"

"No, I BLESS-YOU'D on my paper!"

So.... we've taught some great manners -- but vocabulary needs some work!

Decorating the Tree

When I said we would be decorating the tree,

I should have specified what we would be decorating the tree with.

Merry Christmas Mr. Potato Head.

12 Days of Giving

When Bethany at Life with Bubba, Chicky and Nika began the 12 Days of Giving (on December 1st) I wanted to participate! Her mission was to encourage others not only to give, but to share it on their blog to inspire others.

Somehow, days 1, 2 and 3... then 4, 5 and 6 got away from me. So, I told myself I was too late. If I didn't fully participate in all 12 days, starting on the very first day, then I didn't want to do it. I didn't want to just "sort of" participate. (I've always been a "do it really well or not at all" type of person.)

Anyone else like this?

Well, today I realized that was silly. Sharing even one time is better than none at all! So here I am. Sharing something. It might be everyone else's Day 6, but it's my Day 1. It might be my only day, or it might be one of a few... but I'm here!

(Let me clarify and give me a little credit by saying that this not my only day of giving for the year! I think I do lots of giving throughout the year! This is just my day of sharing my idea of giving... make sense?)

I am sharing something today that I actually do every year after Rylee's birthday. It all started out on Rylee's 1st Birthday. I was overwhelmed by thinking about all the people that had been involved in her life so far -- from doctors and nurses to Early Intervention specialists and therapists - and I wanted to let them know that we appreciated what they had done. I wanted to show them that we'd made it to her 1st Birthday... that she was healthy and happy (and adorable.) Some hadn't seen her since she was in Intensive Care as a baby; others may have only seen her a few times. But, each person had made a difference -- and I wanted them to know.

I started a database of names, and each year I add people to the list. Another doctor, a preschool teacher, a new Physical Therapist, the school van driver... the list just keeps growing.

And each year, after Rylee's birthday, I create a simple 4x6 photo collage of pictures from her party, along with a little message. I mail one to each person on "Rylee's list..."

Here is this year's photo collage...

and a close-up of the message to everyone...

Some people tell me how much the photo means to them... others we never hear from. What I love is putting the labels on each envelope... remembering each person and their role in Rylee's life; knowing that Rylee was a small part of their life. My heart smiles when I realize that we're up to almost 80 names now...

I don't ever want to stop thanking others for being a part of Rylee's life... and our lives.

Six

She turned six.

At first, her little brother had trouble understanding it was her day for presents.

But she saw him trying hard to be a big kid,

so she let him help open a few of her presents.

She checked out her new Viewfinder,

posed with her adorable little purse,

showed everyone her new movies,

and held up her new doll (that giggles and drinks a bottle and says "mama") for all to see.

When it was time for cake,

she smiled,

and laughed,

and reminded everyone at the party what a fun personality she has.

When everyone sang "Happy Birthday," she got a little shy,

quickly blew out the candles,

and wasted no time in devouring her piece of birthday cake.

Now, she is six....

and she couldn't be more loved.

Still Waiting

No, the Comfort Capes story still hasn't aired on The Early Show. Apparently pro-golfer's driving records/marital affairs and holiday fashion shows are taking precedence right now. We were told that Rylee's picture is indeed included on the segment, so we're excited! If I know ahead of time it is going to air, I will definitely post! Until then, our DVR is filling up with Early Shows!

Dear Daylight Savings Time,

I just wanted to quickly write to you, asking for a favor. I know that you have quite a bit of power with the universe... you know, your name is printed on every calendar twice throughout the year. When we get to a particular day in the fall, everyone immediately sets their clocks 1 hour behind and, just like magic, we gain an hour. Again, in the spring, we are reminded of your power, and we lose an hour. (Not that you needed an explanation of how that all works... I'm sure you're well aware -- in fact, much more so than me, who was never very interested in science. Sorry... no offense.)

So here's my favor: I'd like to ask you to add a few hours in each day. You know, to every day of the week. Every week. All year long. I honestly think it would be a very popular move, as many people I know would love more time.

And, as if that request wasn't a lot to ask, I'd like to ask that these few hours added to the day are not hours in which my children are awake. Though I love them dearly and enjoy most every second I spend with them, the tasks in which I would like to get done during these extra few hours are done more efficiently without children around. (Oh, and though I love my husband as well, could we possibly have something else for him to do? I wouldn't want to keep him at work another few hours, so can we come up with something that he could do that keeps him occupied -- and out of the house -- but that doesn't cost money?)

Oh... and one more thing. Can these hours be added to a time in my day in which I am not already exhausted? Say for instance you chose to add these few hours to my evening... well, though I would appreciate the gesture, it really isn't ideal. See, because by the time 8:30 or 9:00 pm rolls around, I am dragging. Done. Tired. Not sure when the best time would be, but I'm sure you can come up with something.

My lists (my "have-to-dos" as well as my "want-to-dos") just keeps getting longer and longer, the days just keep flying by, and I can't keep up. So, these extra hours would be much appreciated. Thanks!

Sincerely,

Comfort Capes Story Postponed

Don't worry... you didn't miss it.  I had to fast-forward through the Early Show twice yesterday to be sure I didn't miss it.  Turns out they flew Amy and her family out to do the story about the Capes live yesterday, only to run out of time!  So, they taped the segment, and it will run sometime later this week.  Thank goodness for DVR... I'll be setting it to tape the show all week! 

Nerdy Lists & Finding Comfort

We are alive and well.  My absence from the Blog World definitely hasn't been from lack of blog ideas -- in fact, I have a little notebook beside my bed that's full of things to blog about, and the list keeps getting longer.  (Is that nerdy that I have a "Things To Blog About" list?  If it is, then call me a nerd, because I have a list.  And if you know me at all, you are not even slightly surprised.)  

We've been spending time with family.  My sister, her husband and 2 girls came from Kansas to visit -- we celebrated Rylee's 6th birthday and my neice's 1st birthday. My mom, dad and aunt came for a few days as well. Lots of pics from that fun visit to come soon!

We've been hanging Christmas lights. And yes, I know many people are very bothered by others who turn on lights before Thanksgiving -- don't worry.  Ours aren't turned on yet.  Not so much because we think we need to wait until after Thanksgiving, but because our timer randomly turns the lights off whenever it feels like it... often just before dark when you would actually be able to see the lights.

We've been vacuuming.  Remember in this post when I talked about our worthless vacuum? After much consideration about waiting until Christmas to get a new vacuum, I realized that neither Jeremy nor I wanted to waste one of our Christmas gift wishes on a vacuum.  (And even if I did, I would not admit it, because that would be lame and nerdy.  And I've already admitted to 'nerdy' with my list about blog ideas.)  Santa has a difficult enough time getting his belly down the chimney, much less his belly and a vacuum.  So, we bought a new vacuum for ourselves and now are pretty much obsessed with the household task.  It's a Dyson.  And it rocks.  

We've been teaching about manners.  

Carter: "Why-wee... get book peas?"  (Translations: "Why-wee" = Rylee and "peas" = please)

Rylee: (Rylee gets book Carter is requesting and gives it to him.)

Carter: "Yank you." (Translation: "Yank" = Thank)

Rylee: silence

Carter: "Why-wee... say welcome."

(In all fairness, Carter gave the girl less than 2 seconds to reply with "You're welcome.")

Rylee: "Welcome."

Carter: "Yank you...... hey Mom!  Why-wee said 'Welcome'!"

*****

Something that's been on my nerdy  "Blog" list for quite some time is "Comfort Capes."  And my reason for needing to blog about this now?  Well, you will just have to read on!

This summer we were asked to be a part of a special project.  "Comfort Capes" were created by a Mom -- a Mom with an imaginative little girl who became sick and needed to spend a few days in the hospital.  And the way a simple super-hero cape worn by one little girl at the hospital during treatment has turned into many sick children, finding comfort in their "Comfort Capes" is amazing. The story is best told by Amy, the creator of "Comfort Capes" here.

Rylee and Carter were asked to be a part of a "Comfort Cape" photo shoot at Sanford Children's Hospital.  Here are a few of the fun photos, courtesy of Sanford.  (Rylee is in a teal shirt with a teal/yellow cape, and Carter is in a red shirt with a navy cape.)

(And yes, that is our amazingly gorgeous new castle-like Children's Hospital.)  

Some of these photos can be seen on the "Wonder Capes" website homepage, or here on this page.

After chasing the kids around during the photo shoot in the summer heat, (you know, to keep them in the camera frame and not running off into the parking lot)  I was asked to say a few words about the "Comfort Capes."  Like I've said before, I'm not very good on camera.  One way to find out what your "nervous tendencies" are is to watch yourself on camera after you've had little time to prepare what you're going to say, and sweat running down your forehead from running around outside.  (So, please ignore the annoying frequent blinking of my eyes and sweaty bangs.)  (Video link in a second... one more aspect of this story to explain!)

Our involvement in Comfort Capes happened shortly before Rylee's tonsillectomy.  So, when they found out that she was going to be having surgery and staying at the hospital, they asked if they could tape a bit of Rylee before her surgery, wearing her "Comfort Cape."  You can see some of the pictures and video footage here.  (Click on the "Wonder Capes and Comfort Capes Story" video.)

Lastly, here is photo of Rylee I took during her hospital stay.  

It's been very exciting to be a small part of this project, and even more so, touching to read the stories from the families whose children have gained comfort during their hospital stays from their capes.

So, why did writing about this finally get to the "top spot" on my "Things To Blog About" list? Well, I'm so glad you asked.

This Monday morning, November 23, CBS's The Early Show, will be doing a story about the "Comfort Capes."  Amy, the creator, emailed me to say that some of the footage and/or photos Rylee & Carter were involved in may wind up in the news segment!  I am excited to see the story!  If you happen to miss it, I will see if I can post it after it has aired. 

*****

If it weren't getting late, I'd tell you about Carter's newest big-boy development, or Rylee's 1st Kindergarten report card, or.... Oh geesh!  Where's my nerdy  "Things To Blog About" list?

Life with An Extra Chromosome {Welcome to Holland}

Welcome to Holland

By Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go. Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.  "What do you mean, Holland?  I signed up for Italy! I'm supposed to be in Italy.  All my life, I've dreamed of going to Italy."  But there's been a change in the flight plan.  They've landed in Holland and there you must stay.  The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.  But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, tulips and even Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, very lovely things about Holland."

******

We found out Rylee had Down syndrome when I was 20 weeks pregnant.  I am often asked if I could do things over again, would I want to know of her diagnosis before she was born. My answer is, most definitely, yes.  And this is why.

We knew we were going to Holland shortly into our vacation-planning.  (We'd only had 20 weeks to plan a trip to Italy... not 40 weeks.)  So, we hadn't bought too many guidebooks for Italy, and our Italian was still very shaky.

"Oh... we're not going to Italy.  Hmmm.  Well, okay."  Though we may have been a bit surprised, our reaction was far from one of devastation.  We didn't personally know anyone who had been to Holland, but we knew that we could find the beautiful things about Holland.

We had time, before our vacation, to exchange our guidebooks about Italy for ones about Holland.  And really, some of the guidebooks worked, no matter where you were visiting.  (There are some ways in which a vacation is a vacation... no matter where you're going.)

We had time to let our family and friends know that plans had changed... instead of receiving postcards from Italy, they would be getting postcards from Holland -- still absolutely gorgeous postcards... just different.

When we got on the plane, we knew we were going to Holland.  Instead of being upset, disappointed and shocked that we were not landing in Italy, we could look forward to all the things we'd get to do in Holland.  No sadness.  Just excitement.

Yes, we had friends that had gone to Italy.  And they talked about how amazing it was.  But, we also began meeting friends who had gone to Holland, and wouldn't have had it any other way. Friends who visited Italy had stories about the gondolas, and friends who visited Holland had stories about windmills.  The stories were all wonderful... just different.

We don't have pain in the loss of a trip we didn't get to take.  Later, after visiting Holland, we did in fact get to visit Italy.  And it was fabulous.  But do I wish we'd gone to Italy first?  

Not at all.

******

Six years ago today, we boarded the plane to Holland.

And this is the amazing little girl who took us there.

Happy 6th Birthday, Rylee Jayne

(Almost) Wordless Wednesday - Halloween Edition

Shrek and Donkey had a great Halloween! Donkey, however, was a bit more willing to take photos than Shrek, which is why he has more pictures.  The kids ate a few pieces of candy and Jeremy and I ate the rest.  It was a fun night!

Notice big sister Jordyn dressed up like.... a teenager.  Holes in the jeans and all.  (Oh, and Jordyn is a great big sister and everything, but don't think she came trick-or-treating with us. We stopped to see her so she could see the kids' costumes.  We are cool, but not that cool.)

Flashback Friday - Halloween Edition

Halloween is a fun time of year -- for our family, it's about fall and leaves and carving pumpkins and dressing up and singing Halloween songs in the car until we can't get Five Little Pumpkins out of our heads.  It's about visiting our grandma's on Halloween and letting the kids show off their costumes and saying "Trick or Treat" (even though the kids have no idea what that means.) It's about visiting a few neighbors houses if it's not too late or too cold, eating a few pieces of candy and heading home. 

For me, it's also about trying to keep candy-eating to a minimum (for the kids anyway)... keeping scary things like cackling witches and spooky ghosts and all other scary beings away from the kids.  (We already have 1 child who needs to have her closet door shut before going to bed - we really don't need anymore frightening thoughts.)

I am all about having a "cute" Halloween.  The scary stuff is definitely not for me.

I like having the costumes somewhat representative of the kids' year.  (Surprise, surprise... making costume-decision-making complicated and difficult? Who me?)  Because the kids have been too young (or completely disinterested) in picking out their own costumes, so far I have pretty much decided what I wanted them to be. (I know... so who is Halloween for anyway?)

2004

When Rylee was almost one, she was a Bumblebee.  Not much meaning behind the bumblebee... however, when I was teaching Kindergarten, I was a bumblebee.  (Not scary and an easy-enough costume to take on and off at school!)  So, the idea that the two of us could dress up together and match was completely adorable, and something I knew I could only do when she was young and had no say in the matter.  So there we were.  Bumblebees.

2005

When Rylee was almost two, she was a Ladybug.  Actually, I don't remember there being much meaning to this either.  Oh yeah... I know.  I had a friend who loaned us a cute Ladybug costume.  Is that meaningful?  (I promise... the costumes get more meaningful as we go along!)

I remember that darn hood wouldn't stay up out of Rylee's eyes... 

... so I guess she decided to kiss that hood goodbye!

2006

When Rylee was almost three, she was a Turtle.  Cutest little turtle there ever was.  Jeremy and I have always liked turtles (even before we knew each other.)  Since we've been married, we've always had at least 1 turtle in our aquarium.  (And maybe someday, I'll write a post about Lucky, the snapping turtle Jeremy found when he was the size of a nickel -- the same turtle I insisted we let go after I found it had gotten out of the aquarium, climbed up the stairs, and began scratching on our backdoor.  Yup.  They grow.)

2007

When Rylee was almost 4, she was a Monkey.  She had been our "little monkey" all year long... she loved bananas and was a silly little thing, so we gave her an appropriate nickname.  That costume was the cutest thing ever -- and when I gave her a banana during our little "Halloween Photo Shoot," it totally sent me over the top.  Adorable.

Carter was 6 months old and a Bumblebee, just as Rylee was for her 1st Halloween.  And, did I dress up in my Bumblebee costume with him, too?  Why, yes I did.  And I could tell you that the reason I'm not posting the picture is because we didn't get any, but you all know me too well. Yes, we got pictures.  So, I guess I'm forced to be honest.  I think I look like a goober in the photo, and since I can't PhotoShop the photo to make myself look un-goober-like, I am choosing not to share it.  Because it's my blog.  And I can.

(This was also the year I began doing Halloween digital scrapbook pages for the kids, and someday, I hope to go back and scrapbook Rylee's 1st few Halloweens.  You know.  When I don't feel the need to sleep at night anymore.)

2008

When Rylee was almost 5, she was Blue from Blues Clues.  Perfect fit.  She loved the show all year, and even chose to have a Blues Clues 5th Birthday Party.  (Thank goodness for reruns and DVR... I swear I've seen every episode.  Did you know that they had 2 different guys on there as Blue's friend... Steve and Joe?  When Steve left, they said he was going off to college, so Joe came on.  Steve was much less annoying than Joe.  And, did you know that Blue, the dog, is a GIRL dog?  There's some incredibly useless information for ya.)

Carter was 1 1/2 and was a Penguin.  Though we had only seen the movie Happy Feet a few times (and probably only parts of it at that) Carter picked up on the silly little dancing-of-the- feet part that the penguin did in the movie.  So, he would dance around and we'd say he was doing his "Happy Feet."  Again, adorable.  (I am now considering re-naming this post "The Post In Which Carin Over-Uses The Word 'Adorable.')

And do you know how we found out penguins like pretzels?  This little penguin wouldn't sit for pictures unless he had pretzels.

2009

And as for this year?  Drumroll please......

Rylee is almost 6, and Carter is 2 1/2.  They. Love. Shrek.  They would watch the movies every day if I would let them.  At first I wasn't a big fan of them watching the movies.  I think there are parts that aren't extremely appropriate for young kids... like when Fiona kicks the crud out of the woodsmen, or when Donkey and Shrek are snotty with each other.  But, I knew I would lose the battle with Jeremy (who would himself watch the movies every day if he could.)  So instead I have done my best to turn it into a learning opportunity.  "Now Rylee, did you hear how Shrek talked to Donkey?  Can you think of a nicer way he could have said that?  And Carter? I know they locked Shrek up in the castle so Prince Charming could marry Fiona, but that's not exactly the right way to 'get the girl,' okay?  Just remember that when you're older."

Carter had a Shrek theme for his 2nd Birthday in April... and the love of Shrek has continued. When it was time for Halloween-costume-pickin', it was a perfect fit.  And actually, there is a little symbolism of these two kids being Shrek and Donkey.  Shrek and Donkey are friends, and deep down they even love each other.  Though they argue and bicker and sometimes say not-so-nice things, they would do anything for one another.  (Hmmm.  Can you say "sibling relationship?")

So, this year, Shrek and Donkey will celebrate Halloween.  They will walk beside each other as we Trick-or-Treat, knowing that they will always be there for each other... and arguing about who will ring the doorbell.

Life with An Extra Chromosome {Characteristics of Cuteness Part 1}

When you anticipate the arrival of your baby, one of the (many) things you think about is what your baby will look like.  Will she have brown eyes like her daddy?  Lots of hair like her sister? There's no denying the fact that physical characteristics are definitely passed along... remember this photo?

June 2009 - 2 years 2 months (Carter... not Jeremy)

Carter definitely will not be mistaken for someone else's son.

Babies born with Down syndrome are not any different.  Some of Rylee's baby pictures show resemblance to Jeremy and me as babies!  Even now I sometimes have people say that certain features of Rylee look like Jeremy or me.

So, kids look like their parents.  Kids with Down syndrome are no different.

However, there are certain characteristics that kids with Down syndrome tend to share.  I wanted to share some of them here, because I think it's interesting.... not because I think that physical features are really all that important.  

I cannot stress enough, though, that all individuals with Down syndrome are unique and may possess these characteristics to some degree or not at all.

1. Almond-shaped eyes/upward slant to the eyes

Rylee's eyes have always been amazing.  Big, blue, and beautiful, with personality all their own.  I don't often see the "almond-shaped/upward slant" of her eyes when they are open wide.

March 2005 - 1 year 4 months

But when she laughs, her cheeks gently nudge her eyes, almost closing them, I can see this adorable characteristic. 

March 2005 - 1 year 4 months

Peeking over the airplane seat on our family vacation to Texas

2. Flat or slightly depressed nasal bridge

Not much more I can say about that.  Here is Rylee's beautiful face (at an angle that shows her nasal bridge well.)

August 2004 - 9 months

This characteristic can create challenges if kids need to wear glasses -- it's difficult to keep the glasses up on their faces.  (Fortunately, there is actually a company that has designed glasses specifically for kids with flatter nasal bridges! Cool, huh?!)  So far, Rylee's vision screenings have been good, so we'll cross that bridge (no pun intended) if we need to.

However, Rylee does like to wear sunglasses.  

Sometimes they stay up...

August 2006 - 2 years 9 months

and sometimes they don't.

June 2006 - 2 years 7 months

But, then again, it might be more of a "kid issue" than a "depressed nasal bridge" issue because Carter, who does not have a "depressed nasal bridge" has issues with sunglasses, too!

August 2008 - 1 year 5 months

3. Single Transverse Palmar Crease (or Simian Crease)

Look at your palm.  Most of you will notice that you have 2 creases going across your palm... one comes in from the left, and one comes in from the right.

On the other hand, some of you might have a Single Transverse Palmar Crease (or Simian Crease.)  This is a single crease that extends across the palm of the hand (formed by the fusion of the two palmar creases that people typically have.)

Simian creases appear in approximately 1 out of 30 people (with males being twice as likely as females to have this.)  It is a physical characteristic often associated with Down syndrome.  

However, I do know of kids with Down syndrome that do not have a Simian Crease, and I do know of people without Down syndrome that do have a Simian Crease.

 

So, even though it isn't exclusive to individuals with Down syndrome, I wanted to share. Because I think it's interesting.  And, because Rylee does have a Simian Crease on both of her hands.  And, because I think her hands are especially adorable.  See?

September 2004 - 11 months old

4. A Little More Room Between the Piggies

Rylee has a little gap between her first and second toes.  I have no idea if/how this has any effect on her... except that it gives her feet a little more character.  I, personally, wish my toes were this darn cute.

September 2009 - 5 years 10 months

This photo is actually courtesy of Rylee... she loves taking pictures with my small camera,

and the last batch of photos I downloaded had this adorable picture of her foot that she took.

Apparently she thinks her feet are adorable as well.

And speaking of feet... here was the result of Rylee's first toenail-painting experience.  If you didn't already know, there is a direct correlation between the number of toenails painted and the length of time in which a 3-year-old can sit still.

November 2006 - 3 years old

Please remember that all individuals with Down syndrome are unique and may possess these characteristics to some degree or not at all.

These are some of Rylee's characteristics...

 

July 2004 - 8 months old

and we love every single one of them!

Life with An Extra Chromosome {Adaptive Movement}

Jeremy and I truly believe in inclusion.  Rylee goes to a "typical" Kindergarten, and has "typical" students in her classroom.  We have done lots of activities since she was a baby (Kinder-Musik, gymnastics, swimming...) in which she was included among other kids her age. With lots of kids comes lots of abilities... lots of similarities, but also lots of differences.

Yet, I think all of us like being involved in some things in which we feel just a little bit more like everyone else. And, maybe for Rylee, right now she does feel that way.  I think that is the beautiful innocence of being young.  

The truth of the matter is...  we haven't really talked about Down syndrome with Rylee.  I have such mixed feelings about how to go about doing this.  I think it would be difficult for Rylee to understand at this point in her development now, which (fortunately!) gives me some more time to sort it all out.  

On the one hand, I know that sometimes things aren't seen as a "big deal" to kids until, of course, you talk about it.  Point it out to them.  And then it becomes a big deal.  I don't want Down syndrome to be a big deal to Rylee.  It is just part of who she is.  

Yet, on the other hand, I don't want other kids at school to be the ones to tell her she has Down syndrome.  (Wow... I definitely would lose my nomination of "Mother of the Year" if Rylee came home one day from school saying, "Everyone tells me I have Down syndrome.  Do I?")   That is, if I didn't already lose my nomination when I bribed my kids with ice cream for good pictures.

I also believe that in order for her to understand who she is, she has to understand everything about herself.  For her to be a self-advocate as she grows up, she has to understand what having Down syndrome means for her. Everyone deserves to know, understand, and embrace their own strengths and weaknesses. 

I want Rylee to feel just like everyone else.  Yet I want her to know she is different, just as every child is different.  I want her to be proud of who she is, and feel accepted and valued among the people she surrounds herself with.

So, to give Rylee the experience of feeling just a little bit more like everyone else, (maybe a bit more than she does in her other environments) she is in a dance class called "Adaptive Movement for Children with Down Syndrome."  The class was started several years ago by a phenomenal teacher at the local Dance Gallery, and there are now 2 classes divided into age groups.  The kids perform each year at our Buddy Walk, as well as other local events.  The performance always seems to be the hit of the event!

Not only do the kids have a great time in class, twirling and laughing and jumping and making silly faces and enjoying each other, but the teacher is very aware of the physical challenges kids with Down syndrome have (to various degrees.)  Because of the characteristic of hypotonia (low muscle tone) the activities focus on strengthening muscle tone, balance, posture, and movement awareness. Add in the elements of performance, self confidence, rhythm, creativity, concentration and practice at following directions and you've got an amazing experience!

Rylee loves going to dance class.  She doesn't know everyone else in class has Down syndrome. But, someday, when she does know, maybe she'll feel just a little bit more like everyone else on Thursday nights.

"Not Me!" Monday!

I have been meaning to write a "Not Me! Monday!" post for, well... several Mondays.  In fact, I have even scribbled down some things I have haven't done this last month or so.  You know, just so my mind didn't go blank the second I sat down to write my "Not Me!" post.  Not that my mind ever does that.

(This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week!)

This month I did not clean up gobs and gobs of dried glue off the wood floor in my office.   I always supervise my kids when they are using glue to be sure the proper amount of glue is being used.  I would never just give them glue bottles and let 'um go!

This month I did not bake the really easy "pull-the-dough-apart-and-set-on-cookie-sheet" chocolate chip cookies for our neighbors (who let our kids play on their swing set all summer, even though we have our own.)  I would never be so lazy as to go to such little work to show appreciation!

This month I did not eat my weight in raw chocolate chip cookie dough (while making the above-mentioned cookies.)  The package specifically told me not to eat it, and I always do what I read.  I would never do something that may put my health in jeopardy.

This month I did not "accidentally" forget the kids' Elmo CD in the house before heading out.  I know they love listening to that CD on the way in to town, and I would never "intentionally forget" something just to keep my brain from exploding at the sound of a puppet's voice.

This month I did not bribe the kids with a treat while taking pictures for our Christmas card. Our kids always sit so nicely and smile their true, genuine smiles every time I ask.  I would never have to resort to bribery, which is something I said I would never do before I was a Mom and needed good Christmas card pictures.

These are not our children, because our children would never make silly faces or cry or try to escape during a mini-photo shoot.  Never.

Happy "Not Me! Monday!"

Life With An Extra Chromosome {3 Types of Down syndrome}

For Down Syndrome Awareness Month, I've been posting facts on Facebook about Down syndrome.  (I guess what the facts were about was quite obvious... it wouldn't make much sense to post facts about growing a garden during Down Syndrome Awareness Month.)

But, for the ga-zillions of you who are "Facebookers," you know that there is a limit on the number of words you can type in one status update. (Not exactly convenient for someone like me who.... well, likes to talk.)

I wanted to share with you all something that very few people know... 

There are actually three different kinds of Down syndrome.

Crazy, huh?

1.  Non-disjunction Down syndrome (Trisomy 21) occurs in 95% of all babies born with Down syndrome.  This type of Down syndrome occurs because of an "error" * in cell division.  The "error" happens either before or at the time of conception.  What happens is that a pair of the 21st chromosomes (in either the egg or the sperm) do not separate properly.  This extra chromosome is then found in every cell in the body. (This is the type Rylee has.)

* I got this description from a reputable website, however I am not thrilled with the word "error."  The dictionary defines "error" as "a mistake."  I definitely don't see this as an "error."  I think chromosomes know exactly what they're doing... *smile*

2. Mosaic Down syndrome occurs in about 1-2% of all babies born with Down syndrome.  In this type of Down syndrome, the "error" in separation of the 21st chromosome occurs in one of the first few cell divisions after fertilization.  This causes the fetus to have some cells with 46 chromosomes (the typical number) and some with 47.  So, not every cell contains an extra 21st chromosome.  (There is no rhyme or reason as to which cells have the extra chromosome.)  Because not all cells contain the extra chromosome, individuals with Mosaic Ds may not have all of the physical characteristics that are typical with Non-disjunction Ds.

3. Translocation Down syndrome occurs in 3-4% of babies born with Down syndrome.  In this type of Down syndrome, a part of chromosome 21 breaks off and attaches itself to another chromosome (often chromosome #14.)  This causes all cells in the body to have the extra piece of the 21st chromosome.  When a child is born with this type of Ds it could mean that one of the parents is carrying chromosomal material that is unusually arranged, but this is not always the case.

So there you have it... 3 different types.  Are you feeling smarter now?

*****

Rylee - 1 month old

When Rylee was younger, I remember some people asking questions that eluded to the possibility of there being different degrees of Down syndrome.  A little part of me wanted to giggle and say, "Well, are you a little bit female or all female?"  (Oh... bad example.  In this day and age there may actually be individuals that are just a little bit female, but I'm not going there.)  What I mean to say is that either you have Down syndrome or not.  There are no degrees... no levels... no "a  little bit of Down syndrome."  You have it or you don't.  Period.

Others have asked me along the way if Rylee is "high-functioning."  This is another interesting question.  Actually, it's a question that I have thought about more over the years, and I'm not a fan of it.  People usually ask this question if they perceive the child to be doing things "well"... maybe the child's speech is understandable to them; maybe the child is accomplishing things that they assume children with Ds have difficulty with.  The question is asked in such a way that, if the child is in fact "high functioning," that is such a good thing.  So, on the contrary, if the child is not "high functioning" then it is a bad thing.

Do we really need to give our children another label?  Rylee isn't "high-functioning."  She isn't "low-functioning."  She functions like Rylee.  

*****

Rylee - 3 months old

Think about the wide range of abilities and physical characteristics of "typical" individuals. Individuals with Down syndrome are the very same way.  The diagnosis of Down syndrome doesn't mean every child will be the same... even if they have the same type of Down syndrome, there are still differences.

Just like I said in one of Rylee's letters, if you want to know what an individual with Down syndrome is like, don't assume you know -- get to know them.

I think you will be quite happy you did.

Life With An Extra Chromosome {Down Syndrome Awareness Month}

So am I the only one with a list of "Blog About..." ideas?  

And if I'm not, am I the only one whose list is getting so long that I'm overwhelmed every time I sit down to blog?

• I owe you all a post about how Kindergarten is going for Rylee (many of you have asked.)

• I owe you all a post about the great success of our Buddy Walk last weekend (many of you have asked.)

• I owe you all a post about Rylee starting dance class (none of you have asked but I will share anyway because I have some pretty darn cute pictures.)

Even though I owe you all of these posts, I am not posting about these tonight.

Instead, I am posting about DOWN SYNDROME AWARENESS MONTH!

When I was 20 weeks pregnant... (now I know some people say "when WE were 20 weeks pregnant..." you know, just to give a little credit to the husband -- but let's face it --  he wasn't the one that threw up for 7 months, got really chubby and had ankles swell the size of tires) we found out that Rylee would have Down syndrome.  

We didn't know then, as much as we know now, that Rylee was born to change the world.  

Years from now, when our family and friends can say the world is a better place because she was here, then she will have succeeded.

Sounds like a pretty good definition of success to me.

Rylee Jayne Griffith, just minutes old