Sunday, December 30, 2012

Welcoming 2013

Andrew, Ellie, and I would like to wish all of you a very happy and safe new year.  The year of 2012 has been kind to us.  Like so many others, we faced many trials and challenges.  There was heartache when my father lost his best friend.  Even more heartache when my father's sister, my aunt Peggy passed away.  A lot of interesting, jumbled up words flowing out of my mouth after my car accident in October.  Yet, we had many celebrations.  We have made many new friends and practically moved into  a Quizno's Sandwiches shop.  Ellie only had one surgery this year-ear tubes.  My husband traveled to Spain for work and did some other important things that I do not understand in the tech-world.  Andrew also destroyed the bathroom. . . and then mostly put it back together.  Ellie has grown leaps and bounds--both physically (The Chunky Chicken is back! and developmentally [pointing, sight reading, communicating beyond the scream]). Ellie also started school this year and she LOVES it! I am continuing to eat bon-bons all day.  Most of importantly, I have my Andrew and my Ellie.

Rather than continue on and one with my list, I compiled a video with photos taken throughout the year.  It is short.  Yes, I am serious when I say it is short. Yes, I know that I take a lot of photos.  Yes, I know that I haven't posted about Christmas.  Do not worry, there will be a Christmas post soon along with a few posts of substance in them.

Because this is my first foray into the video creating word, I am going to share the link with you as well.  At least, I think this is the link Happy New Year 2012

Friday, December 28, 2012

This Affects so Many: Forget Me Not Friday

Do you see this beautiful little girl with strawberry-blond hair and soulful eyes?  This is Tabitha.  My daughter-of-the-heart Tabby.  I have written about her several times before.  I cried when Andrew and I were not able to adopt her.  I cried when it seemed that no one was coming for her.  Then I cried tears of happiness and rejoiced when at long last, she had a forever family. Now, her dream of living with a loving family outside of an orphanage is shattered.

Tabitha lives in Russia.

Children with special needs are unwanted and considered "defective" in Eastern Europe.  This includes the country of Russia.  Parents of children with Down syndrome, HIV, Cerebral Palsy or other "abnormalities" are encouraged to place their children in orphanages. To abandon them.  Eventually, these children age out and are sentenced to spend their days in mental institutions where basic needs are minimally met.  As you can imagine, not many Russian citizens are rushing to adopt these forgotten children.  However, families from the U.S. and Canada are providing these children with loving homes.  Now, that may all come to a grinding halt due to the new anti-U.S. adoption bill that was signed in Russia.

Putin Signs Anti-US Adoption Bill

What does this mean for Tabitha?  Will her family be able to complete their adoption?

What does this mean for Elden?  Will his family ever have the chance to find him?

Or these other children?

These are just some of the orphan children with special needs in one region of Russia who need families.

My heart is so heavy right now and I am worried about these precious children.  My heart aches for all of the families who are in the process of adopting children from Russia.   I wish that I could show you how so many children have thrived since being home with their families.

Blogs of families who have walked the adoption road (not all are from Russia):

Living on Hopes and Prayers -Remember Shawna & Lindsey!

Saving An Angel -Phoebe (the first little girl I ever fell in love with on RR)!

Welcome to Taylorville-Andriy

The Blessing of Verity-Katie (this story is AMAZING)

Carrington's Cruisade


Friday, December 21, 2012

Adventures with Santa

According to Ellie. . .

Mommy, Uncle Matt, and Awa Grandma took me to the mall.  I was really excited because I always get to ride the horses [carousel] with Mama.  Of course, she usually drags me into Gymboree first and shows me these ridiculous shirts with owls or deer or some other animal when what I really want is a cupcake.  Or a puppy.

I digress.  I was in the mall and for something about a Christmas list and I was forced to wear a dress.  And tights.  And, oh I just can't believe this, a HAIRBOW!  Mama must have been drinking a little too much hot chocolate to think I was going to wear a bow in my hair!  

Then, I had to sit in line.  I loved it.  I got to look at all of the kids.  They were merry.  I waved and screamed "AYE".  

Okay, taking too long here.  I can only show off my amazing beauty to other children for so long. 

What on Earth?  Who is this guy?  

Oh no!  He is looking at me!

Hmmm, nice cowboy boots, big guy.  Love the hat too.  Looks like a real beard unlike last year.  Although, I got in trouble for pulling on it last year so I suppose I better not give it a little tug.

I wonder why I am sitting here?  Why are these strange people telling me to smile?  STINK EYE!  Yeah, that will teach them!

I think I am all done.

Yep.  I am all done.  All done now.

Bear literally looked back and forth between me and Santa before signing "all done".  When I stated "oh you are all done", Santa signed "all done" and "Thank you." to her!  Oh and yes, she did pull off Santa's beard last year at a Breakfast with Santa.

Tuesday, December 18, 2012

A Holiday Card from us to you!

Wishing you all a very happy Holiday and a wonderful New Year!

The Night Before Christmas...Texas Style

'Twas Christmas Eve in Texas, when all 'cross th' ranch,
Not one critter was stirrin', not even a branch;

Th' boot-socks were hung from barbed wire with care,
In hopes that th' tops this year would not tear;

Th' kids were all tucked up like cows in a shed,
While dreamin' of baked goods like cookies and bread;

Mom hung up her Stetson by my worn Resistol,
Took off boots, jeans and belts then in bed we did fall,

When out by th' barn there was all sorts of clangin'
We jumped up right quick to see what was a bangin'.

Grabbed up our rifles and dressed quick like hustlers,
Grabbed ammo 'n' shotguns case it was rustlers.

Moon glow on tin roof shined by sand blowin' hard
Gave enough light for seein' and showed th' farmyard,

We 'uns concluded we was a seein' thangs
Like, an old worn-out stagecoach pulled by eight green-broke mustangs,

With a great big ol' driver, who held a tight rein,
we sure knew right quickly it must be John Wayne.

Much faster than bullets his horses sure came,
Still he whistled, and shouted, and yelled out each name:

"Now Pitchfork! now Pickup! now, Chisum and Dallas!
On, Haybale! on, Hairball! on, Lonestar and Texas!

Right over th' leech field! and on past th' well pump
Now gee-up and yee-haw, git ready to jump!"

Like tumbleweeds scurry when tornadoes whirl by,
When they just go and head skyward, up they sure fly.

Yep, up to th' rooftop them horses strivin',
with that stage full of toys, and th' Duke a drivin'

In just a short moment we heard on th' roof
Th' stomping and stamping of each unshod hoof.

As we threw on our hats, and were heading downstairs,
John Wayne kicked in the front door which fell on two chairs.

Was dressed like a sheriff, from his hat to his boots,
And his clothes were all showin' deep-down western roots;

Saddle bag of toys he had flung 'cross his back,
and small things stuffed in pockets too much for his pack.

His eyes how they squinted! his pistol how gleamin'!
His badge was all shiny, his neck scarf tied streamin'!

His shirt unbuttoned, with th' flap hanging down
And th' jut of his chin was as fierce as his frown;

His rifle he held onto tight in his hand,
'Til he got a good feel for the lay of the land;

He had broad shoulders which carried quite a load in
And shook when he laughed as his face creased with a grin.

He was handsome and tall, a legend come to life,
And we sure liked what we saw both me 'n' th' wife.

Him winkin' at Mom and a noddin' his head
Made us glad we did not get Santa instead.

He drawled a few words, but he mostly just worked,
Filled boot-socks with oranges and meat, spicy-jerked,

And waving his hand in gesture well known,
Crashed through a window just as if he was thrown;

He sprang to his coach, toward his team the whip cracked,
Away they all galloped as if some injuns attacked.

But we all heard him shout, as he started to go,
"Howdy, Pardner, all y'all, saddle up, wagons ho!"

-Susan Darnall, 2002 


Saturday, December 15, 2012

Devastation, Guilt, and Peace: My Beloved Aunt Peg

This is the last photo I have of my Aunt Peggy.  It is also my favorite.  True, it is nearly 2 years-old, her eyes are closed, Ellie isn't looking at the camera (but she does have a look of awe while staring at her great aunt), and it is dark, but it is indeed my favorite for it was that night when I was reminded that our family is completely wonderful and perfect.  A family blessed with two people sporting an extra chromosome.

Three Generations of Awesomeness

Margaret "Peggy" Bruns passed away on on Friday, December 14th.
My youngest aunt.  My father's youngest sister.  My inspiration.  She would have been 54 years-old on December 27th.

One of my favorite memories took place nearly 3.5 years ago at my baby shower.  I invited her to sit next to me on the couch.  Together, we open each and every present for my unborn daughter (who we did not yet know had Ds).  Together, aunt and niece, we help up each tiny little onsie, each little dress, every colorful toy.

Back when my cousin M was getting married, she was so excited because she was attending the wedding.  She would be flying on an airplane.  She kept exclaiming to me to me "John Denver.  Rocky Mountain High".  It was her way of reminding herself that the wedding was in Colorado.

To say that I am devastated is an understatement.  I have lost my aunt.  She is gone and I will not see her again in this life time.  I wasn't there to hold her hand in the end even though I was told she probably wouldn't have known me.  Fifty-three years-old.

For those of you who have followed this blog, you know that I have written about Aunt Peg before. You know that she was awesome.  You know that she has a sense of humor that can send you laughing until your sides hurt.  You know that I firmly believe my Grandmother, who passed just before I became pregnant with Ellie, whispered in God's ear to give me a child like hers.

Aunt Peggy had Down syndrome.  The same as my little Ellie.  It was pure coincidence that both of them had designer genes.  It was a coincidence that my grandmother and I had children with Down syndrome at the "young" age of 29.

Despite her youthful appearance, so common in those with Ds, Aunt Peggy was considered "elderly".  People with Down syndrome tend to age quickly or have "advanced aging".  Aunt Peggy, inspite of chronologically being only 53 yo, was in a body that was betraying her.  A body that was shutting down.  A mind that was displaying significant signs of Alzheimer's.  She was having frequent infections, confusion, needing to consume foods in a pureed form (she would recommend the McDonald's fruit parfait).  She was confined to a wheelchair in the end.

Yet, even with her advancing dementia, my Dad could never trick her:

Dad: "I'm your favorite brother, right?"
Peg: Tosses him a look.
Dad: "I am your favorite, right?"
Peg: "No, Buddy".
Let's face, we all know my uncle Dan was her favorite!  She knew until the end which brother was which.

I cry her.  I cry for my daughter.  And I feel guilty.  I could not / cannot help but feel that this was/is a sign of what is awaiting my Ellie.  That Peggy's fate is my daughter's fate.  That I will slowly watch my daughter die in a body that defies her.  In a mind that would no longer recognize her mama.  Oh heaven forbid, that she would die alone.  Peggy had 4 older siblings.  Siblings who rallied around her.  Siblings who sat with her and comfortingly told her that it was "okay to let go".  My Ellie has no siblings.  No brothers or sisters.  Will she be alone?  Will she be with a mama who is also confused?  Or all alone as I would have already passed?

I am wracked with guilt.  This is not fair to my Aunt Peggy.  This is not fair to Ellie.  All life is precious and no one knows what the future may bring.  Life is fleeting.  Our time in indeterminable.  I am going to celebrate Aunt Peggy's life.  I am forever grateful for my Aunt Peg.  She taught me what is to love unconditionally.  She taught me to look at the ability in disABILITY.  My life with her made me realize I could raise Ellie.  I am relieved that she did not die alone, but rather with her beloved brothers and sisters by her side.  That she had a hospice nurse to make her comfortable in her final days.  Peggy was loved and was loved deeply.  She will never be forgotten and she will be forever missed. She was/is an inspiration.

Aunt Peggy, I love you and I miss you.  May you be rocking out to John Denver's Rocky Mountain High with your mom, your dad, and all the angels.  --Your Favorite Niece

He will raise you up
on eagle's wings.
Bear you on the breath of dawn,
make you shine like the sun
and hold you in the palm
of His hand.


Wednesday, December 12, 2012

Holiday Flashback: Ellie's 1st Christmas

This is still one of my favorite photos.  I snapped it the middle of an IHOP parking lot while she napped in her infant carrier.

Left: me!
Right: my brother aka Uncle Matt
She still looks at him like that :)


Monday, December 10, 2012

The Chewy

Sometimes one chewy just isn't enough.

Sometimes a girl has to accessorize.

Sometimes it is important to share your chewies by shoving one (or two!) of them into the mouth of your doctor and then stealing her stethoscope to listen to your own heart beat.

In case you want to be cool like Ellie and have a chewy of your own, visit here.

In case you want to know more about chewelry, visit here.

Thursday, December 6, 2012

Dear Santa. . .Love Ellie

Dear Santa,

Mama says that I am supposed to make a list of things that I want for Christmas because I have been a "moderately good little Bear".  I don't know about this moderate stuff because I have been very good.

See? This is the face of a good girl.

I put my feet back on the floor after Mama tells me not to touch the TV.

I kept the sand in the sandbox.  Eating the sand isn't bad.  It is a sensory experience.

I sign "please" when I want donuts or cupcakes.

I play gently with Sophie dog.

I also pee in the bathtub to save Mama a diaper change AND I let her put a bow in my hair for these lovely photos.

Please remember that with most insurance policies, the first car accident is "forgiven".

See, I am a good Bearity Bear!

Santa, here is my Christmas list:

Maybe get Mama a donut too.  She has been saying that she needs chocolate!


Wednesday, December 5, 2012

An Angel Received Her Wings

Crying as I type this. . .

Yesterday I wrote about an urgent prayer request for my friend.  Today, her daughter passed away.  She has her wings, is flying high, and is dancing with the angels.

I asked for continued thoughts and prayers for my friend and for Aziza's big sister.  Please read her blog post Empty and leave words of encouragement and comfort.

Thank you for all of your prayers.  Aziza, The Warrior Princess, will never be forgotten.


Tuesday, December 4, 2012

An Urgent Prayer Request

A few weeks ago, I blogged about my frien and her sweet little Warrior Princess.

Today, I am begging you for prayers and positive thoughts.  Prayers for our little Aziza.  This evening, our precious Warrior Princess was brought into her local hospital for a stomach bug.  The visit turned into a CODE BLUE .  What was originally thought to be a mild stomach bug turned life threatening.

Our little Aziza, our fighter, the girl who has defied all odds, is critically ill.  Please pray for her, her family, and the medical team.  My heart is breaking as I can imagine her mama's heart is too.

Please head on over to her blog My Sweet Warrior Princess and offer your support.

Thank you for all that you do and all that you are.  Your support, prayers, and positive thoughts are greatly appreciated.  Thank you.


Monday, December 3, 2012

Flaunt it, baby

Do you know the colors of the rainbow?

I had canceled my hair appointment twice.  Once because I was in the car accident and the other time because Bear was sick.  My lovely locks were becoming an unruly mountain of frizz so I was in desperate need of a trimming, er cut.

The cut is fine.  Nothing exciting.  Nothing drastically different.  Just the same ole boring cut that I get year after year.  When the hairdresser said that she had time for highlights, I thought "why not?".  I could use some sprucing up with the holidays coming up.  In fact, I could use some coverage over those white hairs that have been appearing since Ellie was born.  (I blame Ellie for my hair follicles losing their pigment).

I glanced at my watch and knew that I would have plenty of time before meeting Ellie Bear at the bus.  I was going to be hot.  I was going to be sexy.  I was going to be a trophy wife.

Okay, may not a trophy wife, but a girl can dream!

The highlights go nicely and the color looks good.  The hairdresser then says "want me to add some red to it?".

Oh yes!  Just like my baby locks!  Just a little amp up of my natural color.

I was cute, huh?
Guess which one is me?

I was going to look awesome just in time to see my family and Andrew's family and to take those Holiday photos.  Tons of photos that I would actually be in.  I would be the belle of the ball!

Er, not.

You see, my hairdresser and I have different definitions of red.  Mine was going along the lines of auburn or cinnamon or strawberry blond.  Hers was more in tune with the color of cherries.  Those vanilla sundae cherries.  Sort of like my old college days of dabbling with the Vampire Red Manic Panic dye.  That red.  

The thing is, I didn't realize this until she showed me what it was going to look like, after she dyed all of my new blond highlights.  At this point, it was too late.  I had enough time to have the dye toned down a bit and then run to meet the bus.  My first thought was "I better warn my parents!"  Then "I better warn Andrew!"  Then "I wonder if I look good in hats?"

Now before you get all angry with my hairdresser, I am sort of to blame.  At the last visit, we discussed various bold and bright colors for the Reese's Rainbow Bobby fundraiser.  She had suggested red then. I just didn't imagine she meant bright red for this current, pre-holiday visit to the salon. . . Of course, the red is rather festive.  Plus, I feel trendy.  Edgy.  Perhaps even a bit younger!

Rainbow Team, here I am!   Now let's hurry on up and raise the rest of that money.  After all, I already have my hair dyed :)

Oh wait.  You actually think you are going to get to see a picture of my daring new do?  Just call me Candy Cane Anna!

Gah!  Remind me to at least put a bit of make-up on before snapping and posting photos of myself.

This is my "come hither" look.
Yeah, I don't think it is that sexy either.  Maybe I should practice in my spare time.
What spare time?

Jane, my luv, now I know what you mean about the burning scalp.  Yowza!


Thursday, November 29, 2012

Mixed Signal Communication and Dream Lites

It is the end of Signing Time.  The blocks crash to the floor and the utensils held in Ellie's tiny hands are frozen in mid-air.  Ellie, my hyperactive, cannot-sit-still Ellie is staring, mesmerized by the TV.  An "Eee  Yay!" excitedly escapes from her lips.

It can only mean one thing.

That ridiculous commercial for Pillow Pets Dream Lites is on.

It happens every. single. time. that blasted advertisement comes on.  And I want to puke, pull my hair out, scream, click off the TV.

While many children are purusing the toy catalogs and making wishlists for Santa, my daughter has no idea that in just a few weeks there will be a slew of presents just for her underneath the Christmas tree.  Of course, it might help if we were to put the tree up.  Ellie's cannot exactly tell us in words what she wants for Christmas and if I show her a toy ad from the paper, she just tears it or shouts "BALL!" so instead I have been analyzing various toys and learning resources in hopes of finding educational toys.

Yet, a girl needs to have some fluff!  A toy that has no hidden agenda.  A frivolous toy.

Ellie's persistent excitement over the Dream Lite commercial has led me to believe one of two things:
1. She really likes the music in the commercial "dream lite. sleep tight. starry night."
2. She actually wants a Dream Lite

This Mama Bear was not going to ignore this communication from her daughter!  First, I had to consult Facebook.  Can she actually sleep with the blasted thing?  Yes. Where can I find this?  CVS, Target, Walgreens, Ross, Amazon.  Who has it the cheapest?  Ross, at $20 vs. $29.99.

My baby toddler girl was going to a get a Dream Lite from Santa.  Although in the back of my mind, I was still wondering if she truly wanted the toy, but rather just really liked the commercial.  I pulled up the Dream Lites website on the iPad and figured she would most likely want the Penguin of the Puppy. I showed her the pics.

She pointed at the Penguin.

Then she said "gah" and signed dog.  [gah =  dog]


I repeated this process a few times over the next few days.  Same result.  Talk about mixed signals. So does she want the penguin and is signing the dog only because she see the dog or does she actually want the dog?   I was so confused.

At this point, I was starting to become concerned about the Dream Lite supply at Ross and I did the only thing a mother could do.  I took Ellie with me.  To buy a present from Santa.

There was only ONE Dream Lite left.

It was the penguin.

Oh good!  Oh crud!  What if she really wanted the dog?

The Princess sees the Dream Lite in my hands and screams "GAH" and signs Dog.

I suppose that answers that.  The penguin IS a dog in her eyes.  I supposed she wasn't sending mixed messages after all.

As for if she really wanted the Dream Lite.  That would be a resounding YES!  For she yanked it out of the cart and held it the entire time we were in the store.  She then cried when I had to give it to the cashier.  The penguin Dream Lite is now safely hidden away for Santa to deliver.

For other gift ideas (fun, but also educational), visit Ellie's Holiday Gift Ideas.

*I actually have nothing against the Dream Lite toy itself (just the annoying commercial), unless they make noise.  They don't make noise, do they?


A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...