Thursday, April 28, 2011

Myth: All People With Down Syndrome Look Alike

Every once in a while I see a photo of Ellie and it is like looking at a younger version of my niece Haleigh.  Or pictures of Andrew when he was just a wee little lad.  Or my mother.  Actually, I see my mother in Ellie a lot.  It feels sort of strange looking at the baby version of your parent.  Then there is one photo of Ellie where my father gasped and said "that looks like my sister Kris!".  Of course there are moments where Ellie looks like me--the wide-eyed look she gets or the big open-mouthed grin.

Take a wild guess which child is me in this picture.

Did you guess the little redheaded, tongue-sticking out Sassy pants?

You are correct!

Notice any similarities?


How about now?



You see it?  Yep, me too.


Yes, Ellie looks like her family.  True, she has some facial characteristics consistent with Ds and she does have that fabulous, what I like to call "monkey toe", sandal gap variation.


Ellie reminds of my niece Haleigh so much here.



That is me on the left.  I used to be adorable.  
Then I got older.  See the hairline? The wide eyes?


A common belief among the general population is that all people with Down syndrome look alike.  That is a misconception.  Yes, those with an extra copy of the 21st  chromosome have similar characteristics, BUT they look like their family members.

This was taken about 1 year ago.  My father thought Ellie resembled a younger version of his sister Kris.  I am sorry to say that I do not have any pictures of Aunt Kris so we will just have to take Mr. B's word.

A person with Ds may have all or just a few of the following features:

  • Slanted eyes / epicanthal folds
  • Low set ears
  • Flatten face
  • White spots on the colored part (iris) of the eye
  • Small head/microcephaly
  • Small midface
  • Simian crease of the hands
  • Sandal gap toes
  • Smaller hands/feet
  • Shorter femurs and humerus

It is the combination of these physiological traits that may cause a parent or health care provider to consider Ds.  For Ellie, it was her slanted eyes and sandal gap toes (The Down syndrome Footprint).  That and her low muscle tone and heart murmur among other things.  [I remember all of us anxiously awaiting her karotype results to see if she did indeed have three 21s.  "Ooh, I see the Ds in her eyes.  Nope, I don't see it and therefore she cannot possibly have Ds." and on and on it went.]


Who's her daddy?

This was taken last year at Andrew's company picnic.  
I was sitting on a bench with Ellie while Andrew was off doing something that involved a grill.  
These two guys walk by and take one look at Ellie and say 
"She has to be Andrew T's kid.  Looks just like him.".


These are just some traits.  All children inherit their "looks" from their biological family--mom, dad, grandparents, etc.  My daughter's eyes are clearly from my side of the family but she has "The Theurer cheeks".  You know, those big, huge, chunky cheeks that take up half of their faces as infants?  Yep, Ellie had them as did most of her cousins.  Where do you think her nickname "Chunky Chicken" came from? Ellie has also been blessed with my hubby's gorgeous Pantene-commercial locks as opposed to my crazy, unruly curls.  Oh and the round Croatian head.  A nice round head perfect for hats, bows and pigtails.

Awww.  Look at the wee little bambina! 
See those chunky cheeks?  Munch. Munch.
(The Chunky Chicken)

I am told the left photo is of Andrew, however, 
the photo looks more like Mama Dunja.
Nonetheless, see the cheeks?  See the cheeks!

Haleigh also had "The Theurer cheeks!"



  This is  Ellie.  There is a photo of Andrew in his snow gear.  Almost identical.

Still not convinced Ellie is our child?


There!  Our looks combined AND my personality shining through.


This brings me back to the best advice one can ever hear when told that their child might or has Down syndrome:  he or she is a baby/child first.  Love her.  Care for her.  The Ds is just something she has.  It isn't who she is. Designer genes or chromosomely enhanced.  Baby first.


100% Ellie Bellie Bear-Bear


Photobucket
References:

National Institute of Child Health and Development.  Viewed April 26, 2011 at http://www.nichd.nih.gov/health/topics/down_syndrome.cfm

Down Syndrome Pregnancy View April 26, 2011 at http://www.downsyndromepregnancy.org

Tuesday, April 26, 2011

A Texan Easter

I spent half of the evening, after putting Ellie to bed, writing an Easter post about memories and family and whatnot.  It was both profound and humorous.  Well, I would like to believe that, but who are we kidding, eh?   Inserted a photo and lost the whole post.   Oops!

As much as I would love to rewrite this post, my bed is calling me and the creative juices have dried up.

That means PICTURES!!!!

Let me just get my dress all dirty before everyone arrives.

This was the first year Andrew, Ellie, and I celebrated Easter with his family, well actually, any of our families since marriage.  It was long and painful car-ride (what can you expect with a hyper border collie and a hyper toddler bear), but well worth it.  Family is priceless.  It truly is.  

  

Look at the Bear-Bear everyone!  I am all ready to go.  Dress, check.  Shoes, check. Hair bows check. 
Cuteness, double check.  Empty basket, check.

In preparing for Easter celebrations, I have discovered that there are various shades of white.  I was under the mistaken impression that Ellie's dress was white.  It is ivory. Oh brother.  I figured this out when I bought snow white socks and bows.  They did not even remotely match Ellie's dress.  So what does one do before a big road trip?  Emergency stop at Michaels for ribbon, hot glue, wire, clips, and fray check, of course!  Ta-Da--Bows!  


As for socks, eh, she takes them off anyway.

Ellie is entertaining herself with empty Easter eggs.  Hey, we needed to occupy her while Dunja prepared an amazing feast and while we waited for the cousins to arrive.


They'll be here soon.  I just know it!

Hmm, maybe I will just climb on up here.
Do you see this little stinker Bear?  Naughty!

We are making memories over here.  Wonderful wonderful memories full of family.  Two-hundred and fifty seven captured memories on just my camera to be exact. 

Ellie Bear with Mama Dunja


Andrew's mother, Dunja, knows how to put on shin-dig.  Believe me, she should have ran our wedding reception.  Full on decorating, cooking, and baking.  Everything is home-made.  Even the salsa.  She can also get anything to grow so the flower beds.  Sigh.  

The Easter Tree: Paper Egg ornaments


One Word: YUM!



Andrew's step-father, Papa Charles is a grill master.  Ribs! That's right people we had ribs for Easter. . .and ham.  It is just so much more exciting to talk about the ribs.  Ribs!  Meat just peeling off of the bone.

Papa Charles, the grill master & Ellie Bear

The Easter Table

When I was growing up, my family would attend the Easter vigil mass.  I recall gathering in the church courtyard as we each lit our individual candles before proceeding into the church.  The church would be illuminated by just our small, white candles until the booming chorus of "The Gloria" started.  The smell of wax and incense would permeated the church causing my eyes to water and burn.  


Making Easter Memories

The following morning, my father, mother, Matt, and I would gather at my grandparent's house for brunch and an Easter egg hunt.  An egg with a whole entire quarter in it was the BIG egg.  The most sought after egg.  I also fondly remember stumbling upon my mother in the middle of the night (or perhaps very early morning but I doubt it for she is a night owl and NOT a morning person) quietly hiding a plastic yellow egg under the end table in the dining room.  As the years passed, sadly, I became too old to hunt for Easter eggs.  This year I was so excited for I would experience the Hunt through Ellie's eyes.  Ooh the excitement and anticipation!

This is Ellie during the hunt.



Some one spent too much time climbing on window sills and fell asleep.  Okay, I will relive my youth through my nieces!


This is my niece Haleigh.  I see a lot of Haleigh in Ellie.
Anyway, doesn't this little darling look like a fairy woodland creature so pretty and happy?

Did you know that this little turkey corrects me when I call Ellie "Chicka Boom" or "Boom-Boom"?  
Haleigh says "No!  She is Ellie Bear.  That is Baby Ellie Bear".
I stand corrected.


Here is darling Brianna.  She is such a stylish ham.  Always ready to strike a pose and she smiles with such sweetness.


This is cool-cat Lauren.  I am kidnapping her.  Ellie loves her to pieces and Lauren is a wonder with kiddos.  Gorgeous.  Boys, she is off-limits!



Don't you just love seeing little girls in dresses frolicking through the wilderness? Okay, they are not frolicking and they are in a neighborhood, but still, they do not seem to mind the heat and humidity like an old fogey like me.


See Ellie what you missed out on?  Look at ALL. Of. Those. Eggs.
The girls each got 3 baskets full.  Just think of all of the chocolate!



My proof that I live in Texas.  This is my step-BIL John with his hottie wife Kari.
See the cowboy hat and the cowboy boots?  Yep.  Texas.  See!
(Lauren and Brianna's parents)


This is my handsome husband.  A Texas transplant.  Hence the lack of hat and boots.  And accent.  
Honey, can you go get an accent for me?


There is something so special about seeing other children embrace our Ellie.  The way they interact with her and the way Ellie so badly wants to be a part of their activities.  She has only met my nieces a few times and yet the love and acceptance is so evident and palpable.  We are truly blessed to have such a wonderful family and even more blessed that we were able to celebrate Easter with some of them.

Haleigh, Brianna (love that pose!), Lauren, and Ellie
Guess how many shots we had to fired off to get all of these beauties to look toward a camera?  Any camera.  To stay put.  Oh and for Ellie to not yank off any one else's hairbows, but her own.  It was close.  The Bear almost got Brianna's flower bow.  Poor Lauren's arms must be so sore from holding The Bear.

Such a lovely time.  So many memories created.  So many photos taken.  Yes, I am a memory keeper--for myself, for Ellie, and our future generations.  


Kitchen Helper aka Kitchen Remodeler aka Kitchen Destroyer


Photobucket

Sunday, April 24, 2011

Blogger Award!


The great and fabulous Jane of Flight Plateform Living: A mother's journey with precious souls and Smith Magenis Syndrome has graciously passed on The Versatile Blogger award.  Thank you!!!!  Yippy!  I am very excited and very grateful.  Please check out her blog for she writes from the heart, has a great sense of humor, and has adorable children that I just want to smother with kisses.

There are rules to accepting this award.  Since I am not one to turn down such a lovely award, I will comply.

Rule 1: Seven Things About Myself
I suppose I should make this interesting :-)

1. I color code everything.  I mean everything.  It started in the 5th grade when I needed to learn all about the explores such as Ponce de Leon and Christopher Columbus.  Ponce de Leon was on the color blue and even now I remember that he had something to do with Florida.  I think.  In Anatomy, the color green was completely dedicated to the different parts of the sphenoid. When I say everything, that includes lining up the shirts in my closet by color (and Andrew's by BBQ or Tex-Mex restaurants).

2. There have been two engagement rings, two wedding rings, and one marriage in my life.  A few weeks after marrying the Drew-Drew, there was a mishap with both my engagement ring and wedding ring.  A newly wed with naked fingers. Eek!  Materialistic, I know.  Good thing for insurance.  So ladies, if you have not done so already, insure those rings!

3. My birthday is Flag Day. It should be a bank Holiday, but sadly, it is not.

4. Andrew prevents me from being "the cat lady" which somewhat saddens me.  If possible, I would adopt every meowing creature that comes across my path.  I am not allowed near an animal shelter or the PetsMart when they have the rescue people there.  The last time I went to PetsMart, Cat Jazz was there.  I walked out with Amelie.

5. In high school, I was full-blown goth. . . in a Catholic school that required uniforms.  Steel-toed combat boots all the way, baby.

6. I have walked up the aisle with Andrew twice and yes, a officiant was in the picture both times.  The first was when we met.  Sigh.  Heart doing flip flops (he had/has a nice a*s).  We were paired up to walk down the aisle as a bridesmaid and groomsman at our friends' wedding.  We exchanged 4 sentences the whole night.  That is a different story all together. The second time was just after Deacon Dan announced us as husband and wife.

7. My heart hurts every time I look at my sweet Ellie.  She is just so beautiful that I want to cry.  I constantly sneak peaks at her while she is sleeping.  She is that wonderful.




Rule 2: Passing this Versatile Blogger Award on to 15 other bloggers
(These are in alphabetical order and I want to add more than 15, can I do that? Nope.  Phooey!)


1. A Perfect Lily

2. Cowgirl Up!

3. Daddy The Fatty

4. Double Dose of Special/Bringing the Sunshine

5. Just A Little Bit Downsy

6. Little Miss Stubborn

7. Moos Crossing

8. My Shtub

9. No Greater Joy Mom

10. Penny's Peeps

11. Pioneer Woman

12. Ski'ing Through Life

13. Blue Letters

14. The Beautiful Blessings of My Four Boys

15.  Yo Mamma Mamma!

It was very very difficult to narrow it down to 15.  I read so many blogs about family, motherhood, special needs, medicine, musicians, crafts, sewing, baking, life in general, and a traveling gnome.  All of these blogs serve a purpose and are a joy to read.  Some having me in tears while others have me laughing so hard my husband has needed to remind me to breath.  Others just love to kill me with cuteness.  Others provide much needed support in that they remind me that I am not alone.


Up Next: Easter Celebrations!
I only have 257 photos to sift through and edit.  Patience, dear friends, patience.


Photobucket

Friday, April 22, 2011

Happy Easter Egg Hunting!

We were recently invited by a dear friend of ours to attend an Easter Egg hunt.  The campus of the church/school were divided in such a way that each age group had their own area to hunt.  The 1 year-old group had eggs everywhere. . .in plain sight :-)

Ellie, Haley, Jaden

Look mama!  I have a pretty blue egg.  It goes with my dress.  I bet it tastes yummy.

Ellie picked up pretty quickly that the eggs go in the basket. . . . 


As soon as those brightly colored, plastic eggs hit the bottom of the basket, she would dump them out.

Let me just dump this. 

Then she would bang the eggs together.

Bang!  Bang!  Bang!  Whoops!  Cracked the plastic eggs.
Let's not forget that she has to taste them.  Apparently, she will "eat" plastic eggs, but not real eggs.  Go figure.

Nom Nom. Nom.
Then repeat and repeat and repeat. . . .


Remember my friend concerns or my friendship post?

Haley & Ellie communicating via the Third Eye
What was I ever so worried about?

Buddies
Haley is like Ellie's big sister.  They, obviously, are wearing the same outfit :-)



Let us not forget the handsome Jaden.  I am relatively certain he is relieved that he is not dressed the same as the girly girls!

Jaden


Bear-Bear is not so sure about the Easter Bunny

More pictures to come. . . . once I sift through all 127 photos and then edit and upload to photobucket and then blog, etc.

In the mean time, happy Easter!



Goodness Mom!  Why on Earth did you put me on this stinkin' rock with an empty basket?

Photobucket