Ode to Jack and Epilepsy Awareness

Facebook and Twitter and all sorts of social media sites have this thing called Throw Back Thursday or #TBT.  I am guilty of participating.  It is exciting to see all of my friends when they were youngin's (big bangs!  plaid shirts!) and their kiddos when they were little bambinos.  As I shuffled through pics of my darling little Ellie, gasping as I realized that she is a big girl instead of my wee-wittle chunk-a-lunk baby with fatty rolls, I noticed a theme. . . a friendship that has grown as she has grown.

Jack.

Ah. Young Love.  So precious.  I might need to turn the hose on them. 

Why this young strapping blondie puts up with her shenanigans is beyond me.  Come on!  She pulls his shirt.  She destroys his train tracks. She even bit him on the arm once.  And left teeth marks!  She tackle hugs him until all oxygen flow to the brain is cut off.  And yet. . . he asks to go to the mall with Ellie.  To have a sleep over with Ellie.  (what he secretly wants is access to my husbands scrumptious ribs).

The classic "Tackle Hug"

I have written about Ellie's boyfriend, er friend, um boy-that-she-is-going-to-marry-by-a pre-arranged -agreement in some previous posts.  You can read more about him here and here.

Today, March 26, 2014, is Epilepsy Awareness Day.  What does this have to do with Jack?  While Jack may not have the outwards signs of extra needs like Ellie, Jack is walking around with a piece of his brain missing.  Well, it isn't exactly missing per say (we know where it is), it was removed on purpose via brain surgery.  Yes, Jack has epilepsy, which is related to his Tuberous Sclerosis Complex.  Jack's life has been tough, but that doesn't stop Jack from conquering the world with bravery, kindness, and pure awesomeness.

These two look like big TROUBLE, but really it is Ellie directing Jack.  

So pull on your purple shirts and think about Ellie's buddy Jack-A-Roo and all of those who live their day to day lives battling seizures.  For many of us, this is just an Awareness day, but to Jack and his family, this is their life. Every. Single. Day.

As Sheryl and I like to say:

This is in reference to a Ketogenic Diet

Ketogenic foods can and are yummy.  My picky Bear stealing Jack's keto-cupcake.
Dear Sheryl, please write cookbook.  Thousands would be very grateful.

Visit Sheryl's blog to learn more about Jack and his family at Thumb in Mouth.
Jack's Story

Busted! The Diva is at it again!

The Austin Statesman:

A Four-year old little girl is on the loose!   Last known whereabouts at Mom's Club playgroup with co-conspirator Hot Mama Pants.  Attempted to flee the scene with Sofia the First backpack and Hello Kitty goulashes.  It should be noted the day of the theft was dry and sunny.  Stolen contents stashed in Sofia the First backpack.

Contents retrieved from robbed friend's house: stash of Little People, wooden stacking blocks, and 3 plastic play utensils.  It is possible the culprit believes the play utensils are "hers".

Witnesses state that they believed the perpetrator was parallel playing and "shopping" even though she shoveled items into her backpack and announced her farewells by screaming "bye bye" and signing "home".  She also brought Mama Hot Pants one adult, very stylish, and extremely coveted red cowgirl boot and her sweater while exclaiming "bye bye yeah yeah".  This was clearly a planned escape.

If you spot Ellie Bellie Bear, proceed with caution as she is considered to be armed with a blankie and cranky.   She is known to perform the dreaded "stop, drop, go boneless" maneuver to escape apprehension.

If you see Hot Mama Pants, be sure to approach with chocolate and coffee.

World Down Syndrome Day: Ellie Video

Okay, I fixed the video!

March 21st has always been a special day for our family.  It was the day my brother rushed into the world and forced me to share my parents.  It was also a day of a snow.  Sorry folks, snow in late March, on the first day of spring no less.

On September 16, 2009 my daughter Ellie Marie was born and my husband and I learned that she was/is carrying an extra copy of the 21st chromosome in every cell in her body.  Our Ellie has Down syndrome or Trisomy 21.

Now, on March 21st, in addition to celebrating my brother's birthday, we also celebrate all individuals who have Down syndrome--three copies of the 21st chromosome--3.21

Here is Ellie:



Oh and, Happy Birthday, Matt! --love, your favorite sister ever

To learn more about Down syndrome, click on the tab labeled Down Syndrome T21 at the top of this blog or visit www.ndss.org

Thank you to Anonymous

I don't know who you are, but I do hope that you see this post.  Please know that you brought tears of happiness to our family.  Today we received an email letter from the National Down Syndrome Society stating that a donation was made in Ellie's name.  --“A daily inspiration from you, your family & blog. Love anonymously!” To whoever you are, thank you from the bottom of our hearts.  Your kindness is met with such gratitude and shall not be forgotten.

- The Ellie Bellie Bear Theurer Clan
(Anna, Andrew, and Ellie)

I blame it on my husband, Ellie antics

. . . it must be from his side of the family.  Because I  clearly wasn't like this growing up.  I wasn't!  I swear!

We were at the mall.  I promised Ellie that we would ride the train.  She was relatively patient as I bought our tickets.  She did okay while waiting in line even though she was frantically signing "black" as in she wanted to sit in the black train car.  When we got to the front of the line, the conductor told us that they were full and we shall be the first ones on the next train. . . in 8 minutes.

Eight minutes is eternity for a 4 year-old with ADHD.  Expecting a full meltdown, I strapped Ellie in the stroller while getting in on her eye level and employed the First-Then approach.  You see, I had big plans to go into Children's Place today.  The Bear seemed to have gained an inch in height and is borderline giant in the Ds world (90%tile) so chica needed new clothes that would cover her huge bo-dunk-a-dunk.  So I told her "first the store, then the train".

Ellie loathes shopping.  You walk over the threshold into the store and she starts to complain.   By complain, I mean shouting "nooooooooooo!".  Occasionally, she shows me her immense displeasure by flinging off her shoes and socks in opposite directions.  She is starting to get better because I let her pay and hold the receipt.  Sadly, I have to take her with me to the clothing stores.  I have learned that I cannot buy clothes without her.  You see, if I pick something out and it isn't to her taste, she will not wear it.  I kid you not.  She will take it off and hide it.  She will then attempt to break through the child lock on her dresser and choose her own clothes.  She is a big girl and has definite tastes.  Something that I also blame on Andrew's side.

Ever the fashionista.

This brings me to shoes.  Oh yes.  Shoes.  To get to Children's Place, I had to pass Stride Rite.  They had their new collection on display.  Princesses.  Just outside the doorway.  As in slightly in the walkway of the crowded mall.  Bear shouts "ooooooh" [shoe] and starts to take off her shoes.  While I am scrambling to snatch up her discarded shoes,  Ellie grabs the display shoe an puts on her foot.  Three sizes too big mind you and still full of tissue paper.

You know how kid's feet seem to grow overnight?  Well I was just thinking that we needed to get new shoes.  I did not plan to purchase them on this trip, but seeing as Ellie was actually wanting to go into a store, we went in and bought the shoes in her size.  They are princess shoes.  Sparkly.  She sat in her stroller, legs stretched out in front of her, admiring her awful girly princess shoes.  Clicking her heels together and acting all diva-like.  Maybe Ellie will actually wear her shoes at school now.

Save me.  Oh save me.  I have a girly girl who likes clothes and shoes.  Shoes with jewels!  Shoes with princesses and glitter!  Glitter!  I may be blinded by the fru-fru shoes.

All of this made me think of my niece, Haleigh.  Who is on my husband's side of the family. The adorable blonde-haired cutie who informed Andrew that she "only cares about fashion" and it is "all the fashion".  Clearly, this is not my fault.  This is all Andrew's.  The girly girl fashion gene is from him!

Brb, it is really really really quiet here.  Quiet + Ellie = catastrophic trouble

Errr, so, um.  Bear apparently climbed onto the bathroom vanity and emptied my jewelry box.  Guess she needed some accessories to go with her new shoes.



*I did not teach her this.  When she was, but 18months old, I was out buying her a straw cup.  I held up Lightening McQueen and Mater from Cars.  Come one, CARS!  She reached out of the cart and grabbed the pink Princess cup.  Little Bear was showing her preferences even then.

**Do not ask Ellie who any of the princesses are.  She has never seen the movies.  I actually like the Disney movies but Princess Bear will not sit through them.  She only watches Signing Time, Mickey, and Sofia.  You know things that are almost 100% music and last no longer than 20 minutes.  I have to watch these movies alone.  Very alone.  "the seaweed is always greener in some body's else lake.  you dream about going up there, but that is a big mistake.  just look at the world around you. right here on the ocean floor. such wonderful things surround you.  what more are you looking for?  Under the sea!  Under the sea!"

*** she went up a full shoe size.  Not a half size like usual.   Oh and I never made it to Children's Place.  Bear has to go au natural since we bought the shoes instead!

****Dear Stride Rite, I mentioned you in this post and I even posted pictures of your shoes.  If you would like to give me a discount for the free advertising I am bestowing upon you, that would be great.  Until then, I have received nothing for this post.  All opinions are entirely my own.

RESPECT: the new R-word

www.r-word.org

Today, 03.05.14, is the day of Spread the Word to End the Word campaign.  A day where we unite together and bring about awareness.  Awareness about the derogatory words "retard", "retarded", and "-tard".  The thing is, today is just one day of many where I cringe when I hear someone using the r-word as a means of saying something that is uncool, stupid, boring, ridiculous, dumb, etc.  Let us spread the word, to end the word, everyday.  Let's us start showing everyone respect.

As I sat down to write today, I realized that I already had several past blog posts harping on society's use of the r-word.  Instead of writing the same message, I shall resurrect an old post about why using the r-word is such a big deal.

Taken from October 29, 2011:

The R-Word Rant

As parents it is our job to spread the word to end the word.  Just as you would not (okay, a few slip ups here and there) cuss in front of your children, the word r*tarded should not be used either.  After all, children learn to use these words through television, music, and parents.  Yes, parents.

I am ashamed of myself.  I have no qualms about writing heated letters to television and movie producers or to politicians (take that H. Braun!) and speaking out to strangers when the r-bomb is used.  However, when it comes to acquaintances, I am so dumbfounded and shocked that the word r*tard actually escapes their lips in my presence that I typically say nothing.  I hang my head, I say nothing, and I am horrified.  I need to change that.

If I could just write a lovely letter, print it out, and give it to them then maybe I could make a change and get my point across without the anger and without the tears.  I know some of you may say that I need to grow thicker skin, but I believe this is a battle that should be fought and can be won.

Would you say "that is so g*y" or "you n*gger"? to someone or when telling a story?  No, I hope not!  It is discriminatory language and politically incorrect.  It is frowned upon and you open yourself up for a major butt kicking.  The same goes for the r-word.  R*tarded.  In some ways, it is even worse as this word is discriminatory towards a group of people who cannot always defend themselves.  "That is so r*tarded" or "They are so r*tarded".  I know when my acquaintances say the r-word it is not directed at Ellie and yet, it is very offensive.  I am mortified.  Please remove that word from your vocabulary.  Treat it the same as you would a cuss word or the word n*gger.

My daughter may be slow at walking, talking, and understanding abstract concepts.  That is the true meaning of the word r*tarded.  Slowed.  As a flame is slowed upon spreading across an article of clothing.  Flame retardant.  And yet, the word is often used to mean stupid, idiotic, dumb.  My daughter may be slow at learning things, but she is not stupid.  Choose another word.  Please.  Grab a thesaurus if you need to. As she grows up, she WILL KNOW what r*tarded means.  She is not stupid.  She will know, just as her peers know.  Choose another word.  Remove r*tarded from your vocabulary.  Do not let your children add this word to their repertoire.  Remember, words can and do hurt. Spread the word to end the word.

In the meantime, I am going to grow my thicker skin and brace myself for the conversations I need to have.  I am not going to let mortification and fear of my acquaintances' reactions keep me silent any longer.


A big thank you to Andi from Bringing the Sunshine  who mentioned in the comments section that there is a printable business card on the Spread the Word website http://media.specialolympics.org/soi/files/spread-the-word/2012/Spread_the_Word_Card2012.pdf




To learn more about Stop Disability Slurs, visit https://www.facebook.com/stopdisabilityslurs

Unleaded

About 5-6 months ago, we had Ellie tested for a whole slue of things due to her random\ frequent intermittent fevers (which she still has), her propensity to develop cellulitis any time she gets a bug bite (still happens), and her excessive fatigue (which has resolved).  We discovered during all of this that she also had lead toxicity.  You can read more about it at "my daughter has been poisoned" and at "leaded ground". The lead poisoning was not extreme enough to require chelation therapy, but it was enough to warrant the testing of items around the house along with our piping, paint, and built-ins.  After frenzied testing and hoarding lead-testing at-home kits, we learned nothing.  Well, we learned that our house and Ellie's toys were not poisoning her by depositing lead into her tiny system. Everything was popping up negative. We were then advised that we follow the annoying "wait and see approach".

Semi-recently, Bear has been having other health issues involving, well poop, and while I will spare you the gross details, the doc decided to do some blood work and an x-ray, and strange acts of preschooler torture involving a purple nitrile glove [yuck].  I requested that she throw in a repeat lead level while she was at it since it had been 6 months.  

This is Bear's reaction when she found out about getting her blood drawn:

I have no idea why she is wearing her winter hat.  Maybe because it goes with her outfit?  Upon seeing the nurse, she ran out into the hallway, threw herself onto the ground, screamed "bye bye". When the whole ordeal was over, she graciously thanked the phlebotomist "ank ooh  ank ooh" while dramatically giving her the princess wave.

This is Bear getting her "reward" for having 4 vials of her blood sucked out of her like a vicious leech.

Ellie doesn't want to look at me.  She is afraid I will steal her ice cream.  She is right, you know.

This is Ellie when she found out her lead levels were NORMAL!

Yeah, she didn't really care.  So this is what I was doing:

We may never know what caused the lead poisoning.  Maybe it was a whole bunch of mini-exposures from back when she mouthed everything.  Maybe she swallowed something that had lead and finally cleared it.  I do not know, but I am relieved that this issue is resolved.