Letters from The Bear

Hello readers!

It is me, The Ellie Bellie Bear and I have hijacked Mama's computer.

Did you know that if you push multiple keys at once the computer no longer works?

I wanted to share with everyone that I am now saying two new words "Pop!" and "purple".  The exciting part is that other people besides Mama and my speech therapist know what I am talking about.

The Scream is still my preferred language, but sometimes I am being asked to make a choice between red & purple and the Scream does not get me what I want.  Since I cannot sign "purple" I had to use my voice. I will only say "purple" when asked to choose something.  If you ask me what color something is, I will totally ignore you.  Seriously, why should I tell you what color it is?  I have more important things to do such as building really big towers and knocking them down or dressing myself in beautiful jewelry.

I still do not know what a weasel is or why there is a monkey chasing him, but I do know that he loves to go POP!  POP! POP! POP!

Lately Mama has been saying STOP when I reach for Sophie's water bowl.  I think that is a good idea.  I have started to say STOP too (actually, I say "op" because all the cool toddlers drop their S's) before I daintily dip my hands into the bowl and splash splash splash.  Afterwards, I take a hand towel and wipe the floor.  Mama says that I am a good little Bear-Bear, albeit an ornery one.  I do not know what ornery means, but I am sure it is a compliment.

Did you see that I have a big girl bed?  It is fun to bounce on, but I prefer to sleep on the floor.  My parents got new carpet just for the occasion.  Oh wait, Mama just said the new carpet was because our old one was nasty, gross and old.  For some reason, I wake up in my big girl bed every morning.  How does that happen?  Is there a Bed Fairy who transport little girls to their beds?  If so, why doesn't she leave me raisins or chocolate?

mmmm Nutella. Maybe there is a nutella fairy!

Mama has been informing me that I can't tell people to "die die" anymore.  She says that it isn't nice.  She keeps on saying "Buh-eye" while pointing at her mouth and it is really annoying.  I have decided that I shall now wave and shout "guy--guy" to everyone I see.  I will be especially loud in restaurants and parking lots as I want to make sure everyone hears me.

Guy-Guy,

Ellie Bellie Bear

Forever A Mother

I crashed my mom's baby shower.  No, really, I did.  On June 13, 1980, my mother and father were enjoying a lovely baby shower thrown by her family.  Cathy went into labor at the baby shower and had to leave.  I entered the world screaming at full lung capacity and kicking so much the nurses couldn't get an accurate weight just after 1:00am on June 14th.  I never could resist a good party and I am known for being early to every event so why not be early to my own birth?  That was the beginning. . .when my mother's life turned into caring for a colicky, hyper-active daughter.

Awa, a name I gave my mother, has been my rock.  Throughout all of life's trial and tribulations, I have turned to my mother for support, for advice, and for a shoulder to cry on.  Just talking to her would calm me down.  When life gets exciting, my mother is the first person I call.  When Andrew has trouble reasoning with me, he suggests that I talk to my mom (smart man!). She is my best girl friend.

My parents have taught me so many important life lessons as well as good morals and values.  They are the same morals and values that I looked for in my soul mate.  These are the same morals and values that I hope to instill in my little Ellie.

Awa is a good mother, the kind of mother that I hope to be for Ellie.  She is also an excellent grandmother who showers Ellie with unrelenting love and sees all of her potential.

Often times I hear women say "I am nothing like my mother" or "I will never parent like my mother".  I, however, want more than anything to be like my mom.

Happy Mother's Day, Awa and Happy Mother's Day to all of you!

Eat Mor Chikin, Ellie-isms, and Communication

Whenever we arrive at our destination, I announce to Ellie where we are. For example, we are at the grocery store, we are at Kohls (she usually screams in terror at that one) or we are at Quiznos (at which Ellie points to her nose).    I never really knew if my little girl was making the connection until today.

When the weather is horrid i.e. the playground equipment would cause 2nd degree burns on Ellie's little legs or there is some freak incident of water falling from the sky (my non-Austinite friends have informed me that this phenomenon is called 'rain'), we head on over to the Chick-Fil-A with the really fancy indoor playscape that The Bear is able to navigate.

Ellie signing "hat".  She wants me to put a boulder rock on my head.

This afternoon, it was evident that the Bear was in need of some quality climbing time.  She was in a full blown motor sensory seek mode in that Ellie gymnastics were being attempted on all forms of our household furniture. Grasping on my last straws of mama sanity, I said "Ellie, do you want to go to Chick-Fil-A" not really expecting any response other than "no" complete with an exaggerated head shake, because in toddlerhood, everything is an emphatic No!  Imagine my surprise when Ellie exclaims "Ya" and signs 'play'.  For all of my preaching about having high expectations and not setting limits, I clearly underestimated my girl.  Clearly, Ellie Bear knows exactly what a trip to Chick-Fil-A is all about.

Ellie's face after I put the rock on my head.  Apparently it wasn't as funny as she hoped.

As we arrive at Eat Mor Chikin, Ellie patiently waits as I purchase my Diet Dr. Pepper.  Okay, well on a toddler scale, Ellie was extremely patient.  She then sashays over to the playground door, sits down, takes off her shoes and hands them to me.  Every patron is the eatery is smiling at her.  Ellie then touches the door and signs "help please".  Smart and polite little Turkey Bear!

My littler girl never ceases to amaze me.  She understands so much more than what I give her credit for and I really need to remedy that. Just because my Ellie is mostly nonverbal, it does not mean she doesn't comprehend what is being said to her.  Just because she is nonverbal, does not mean she cannot communicate.  Ellie understands so much and she is learning to express herself using the tools that can access--her signs and her actions.

Darling Ellie, you are a super smart, bright girl who is continually learning and striving hard to reach your full potential.  I will no longer underestimate you, but instead I will celebrate all that you are and all that you will be.  I will always be your biggest advocate.  Your biggest cheerleader.  Forever, I will love you.  -Mama

Tuberous Sclerosis and Ellie's Best Friend

Your child may have intractable seizures, tumors in any major organ, a 60% chance of Autism, and a host of potential developmental issues.  Those are not the words a parent ever wants to hear when they go to the doctor with their infant.

It is estimated that one child in 6,000 live births will have Tuberous Sclerosis.  Ellie's best friend Jack is that one.

Photo courtesy of: http://thumbinmouth.blogspot.com

I was very pregnant with Ellie when I happened to be assigned to Sheryl's table at my mother's club meeting.  Jack was just diagnosed with infantile spasms.  The next time I saw her, Jack given the genetic diagnosis of Tuberous Sclerosis Complex [TSC].  Sheryl was left saying "a tuber what?" Later on, Jack went on an extreme diet, the ketogenic diet.  Ketone testing strips were bought on a regular basis and every ounce of food had to measured. One raisin could induce seizures causing damage to his developing brain.

Anyone looking at Jack would believe he is a typically developing little boy.  Jack is a precocious 3 year-old toddler who loves to snuggle and enjoys playing with trains.  Woody and Buzz Lightyear are his favorite Toy Story characters. He enjoys snacking on walnuts from the little plastic blue bowl at my house.  He loves pushing Ellie around in her red car.  Jack has the sweetest smile that just melts my heart.  Jack also has tumors in his heart.  He has also had a portion of his brain removed to control his seizures.  The large scar along his head, his war wound, has been disguised by his hair, but the trauma is still there.

Ellie and I have been so blessed to have Sheryl and Jack in our lives.  Sheryl has become one my dearest friends and Jack is Ellie's unfailingly her best friend.  While my daughter plays among other children, she follows Jack around like a little puppy.  She mimics whatever he is doing.  Jack is my little buddy.  He shouts "Anna!" from across the playground and wants to sit on my lap.  He gives the sweetest kisses and best hugs.  To know everything that my little man has gone through and to see what a strong, kind, boy that he is given all of his hardships is amazing.  He is strong.  He is a fighter.  His mother, the same.

Not many people know about Tuberous Sclerosis.  There is a shortage of funding for research and therefore treatment options.  The month of May is Tuberous Sclerosis Awareness Month.  It is a month dedicated to bringing about awareness.  While TSC may be "celebrated" for one month, it is everyday life for my friend Sheryl and her son Jack.

Team Jack-A-Roo will be walking in Dallas the morning of May 19, 2012 to raise both awareness about Tuberous Sclerosis and to raise money for the TS Alliance.  Small donations add up and even just spreading awareness on FB, Twitter, or blogs make a huge difference.  If you would like to donate, please visit HERE

If you would like to learn more about Jack and his journey, visit Sheryl's blog Thumb In Mouth.

Photo courtesy of : http://thumbinmouth.blogspot.com

Operation Big Girl Bed

I am truly blessed to have a great number of friends who have walked this road before me.  They are chalk full of great advice and I have discovered that there are two schools of thought related to the Big Bed transition.

1. Sit by the child's bed.  Each time she attempts escape, quietly place her back into bed.  Slowly move further and further away from the bed until you are out of the room.  If she tries to escape again, start at the beginning.

2. Child proof the room (if you haven't done so already) or remove everything from the room such as the dresser, toys, etc.  Place her in the bed.  If she escapes, the room is safe.  If she falls asleep on the floor, place her back in the bed.


Andrew and I had different ideas on what we wanted to do.  Sadly, we are doing both of the above options which I am certain will come back to bite us in the behind.

Ellie needs her nap.  She really needs her nap.  Otherwise, the little Bear transforms into an angry, cranky Bear with claws and a ferocious growl come 5pm.   We do not have the luxury of allowing her option #2 because she would never sleep.  Therefore, I do sit next to her bed.  As the days go by, I am finding that I need to spend less and less time in her room.


Bedtime is another story.  Pre-Big Girl Bed, Ellie would typically take anywhere from 15-45 minutes to fall asleep no matter what her bedtime was.  She needed quality blankie time to unwind.  We removed everything from Ellie's room but her dresser and some books.  The door knob has been reversed so that she may not lock herself into her room.  Note: We have a video monitor that covers her bed and part of the crib (we will be taking down the crib soon). The first night she did well.  She climbed out of bed once and put some of her lovies in the crib.  Of her own free will, she climbed back in her big bed to sleep.


The second night, she climbed out of the bed, played for 30 minutes, then climbed into the big bed to sleep.

The third night, she climbed out of bed and played (notice a theme).  When all was quiet, I went into her room to see her sitting on the floor surrounded by books.  She looked ready to passed out so I placed her into the bed.  She fell asleep within 5 minutes.  A short while later, we didn't see her on the monitor so I, again, went into her room and saw this:

In the few days since I started writing this post, The Bear started to do something rather peculiar.  Andrew and I planned to take down the crib this weekend only to discover that Ellie has climbed back into her crib to sleep.  Hmmm.  Any thoughts?

Let Us Not Give Up: forget me not friday

Forget-Me-Not Friday is a blog host sponsored by Jane at Flight Platform Living with the goal of bringing about awareness of orphans with special needs in Eastern Europe.   To learn more about why this is such a cause close to my heart, please click here.  Have tissues handy.

First off, do you remember Shawna and Lindsay?  I met these beautiful, beautiful girls in person over the weekend.  Their forever mama is a member of our local Ds group and when we had our musical kids'  gathering, she brought her son and two, lovely little girls.  Shawn and Lindsay have been home for a few months and they are thriving.  Living proof that a forever family is balm to the soul.

(Shawna & Lindsay now Naomi and Hannah)

Secondly, do you remember our dear Shannon?  Honestly, I feel like the Sphak family has endured the longest pregnancy ever.  Less than 2 weeks ago, little Shannon's forever father met her for the very first time (Mama had to stay home with the kids) in Bulgaria.  The smile on Shannon's face as she hugged her papa is breathtaking.

Shannon

While Shawna, Lindsay, and Shannon have families, there are so many other children who do not.  So many other children who have been discarded and sentenced to live in mental institutions all because they are "defective", "unworthy", "broken".  All because they have Down syndrome, Cerebral Palsy, Fetal Alcohol Syndrome, Crouzon's syndrome, HIV, or some other disability.  Each and every single one of these children deserve love, a home, a family, and medical care.  Each and every single one of these children are worthy, valuable, and important.  The children shown below all need families.  Please, help me spread awareness and maybe their family will find them.

UPDATE:  Since writing this post, Tamara (who is shown below) is now listed on the My Family Found Me page at Reece's Rainbow!!!!!!!

Neal

Stacy

Catherine P

Tamara

James (2H)

Colton

Artem T.

Can We Take Her Out In Public Yet?

It has been oh so long since I posted this:

October 2012: How to Use a Spoon

Surely there have been vast improvements in Ellie's self-feeding skills. . .

Hmmm, we still have a little ways to go.


Perhaps we will be sticking to finger foods when we go to restaurants.