10.31.14 Happy Halloween

Aaron on left, Dan on right and Elliott & E.T in center.

Aaron on left, Dan on Right and Elliott E.T in center.

Yeah, Hitch got 2nd place for her Halloween costume…
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Jared from GA is rockin! Won a costume contest!!!
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LaDonna made Frigginstein cupcakes for my man Walker. Remember that story from a week or 2 ago? hahahaha

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Thank you Aunt Barb!!!

10.30.14 Dedication – Mikey

Let me just say Mikey is AWESOME!!! I have known Mikey since I was a baby. Mom she thinks they are the first WS family we met, Jake was probably 4 and Mikey was probably 3. Somewhere there are pictures of them together.

Mikey

Mikey is a great musician. Ms Debby asked him to play something on the piano and he just plucked these songs out of mid air. No paper music, just plays by ear!


Mikey loves his local fire and police department as much as they love him! He finished high school last year and is taking classes now at USF (University of South Florida). His favorite class is Spanish!

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Mikey is easy going, will just go where ever when ever. A few years ago we went to an America’s Got Talent audition in Tampa with Mikey, Jake and our moms. It was a great day!

April 25th Mikey learned to drive a golf cart in Folkston GA. I remember the smile on his face (no not just because the pic is here, I really remember it)!

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And here he is with his friends hanging out with the Band Perry in June in Nashville!!!!!

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10.28.14 Dedication – Ashley

And another one of my beautiful girlfriends from VA, Ashley! Recently her Mom took her to see Frozen on Ice. She cried she was soooo excited! Who wouldn’t be? Have a great Halloween Ashley, even though we know this beautiful dress is not a costume, it is a seriously pretty Princess gown!
Dan and I will be at Slippery Rock University over Halloween so cannot participate in this drinking game but what a great idea… “for every Elsa that visits, take a swig”.

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Ashley is our second child, with her pregnancy everything was wrong, she is a miracle child really, she came to this world on March 30th 2005 weighting 5 pounds 6 ounces, and been 17 inches long. As soon as I saw her I was in love, she came home and nothing seemed wrong, she cried all the time for hours and hours, just as if she was in pain, all the doctors could tell me was, all babies cry and there is nothing wrong with her… With a heart murmur as the only explanation why… Time passed and I noticed that her eye lashes were inside her eyes, she had to deal with that for a year, she was late in every milestone, she stated crawling after been a year old, walking after 18 months and no talking… Again no explanation of why, when she was 3 I stated to look for help and finally got the school system to do an evaluation to her, she was diagnosed with speech delay and developmental delay, at age 4 she started pre school, and speech therapies, she started talking, the Williams syndrome diagnosing didn’t came for another 2 years, I took her to an ophthalmologist for a check up and he told me that with his experience he could tell she had Ws, I went home and started the research about it, asked my doctor for a genetic test and waited… After some weeks the results came back, she had Williams syndrome, she was 6 years old at the time, after that she started special education and we now see 14 different specialists including a speech therapist, occupational therapist and physical therapist, she is now 9 years old, the light in our house and the blessing we needed, she was meant to be with us, and she is our joy. She is a very smart little girl, filled with love to give and always making people smile and laugh. Nothing stops her from getting what she wants and fighting like a trooper, I learned so much with her, people tells me that she is so blessed to have me, but I think it’s the other way around, I am the blessed one for having her.

10.27.14 Dedication – Gracie Ann

Gracie seems to be my kinda gal!!! Look at her spunky self! Just tooo cute!

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“Gracie Ann is a vibrant four year old with Williams Syndrome who is adored by her parents, Brian and Nicole, her little brother, Jackson, 18mos and her puppy, Maya. Her Story: Gracie’s diagnosis came prenatally when I was 30 weeks along in my pregnancy. It was a terrifying time for us…if only we had known the joys to come! She is the light of our lives and a joy to all those who have the pleasure of meeting her. She enjoys going to school, playing with her friends outside, going swimming, to her tumbling class, jumping on her bouncehouse and going to the family’s clubhouse and her grandpa’s farm. Gracie has been blessed with very mild medical concerns and is doing great in school so far! She has a bright future ahead and we can’t wait to experience all the joys that she will bring in the years to come. We love you Gracie!!!”

Is this classic WS or what?? Pure joy over nothing more than the attention from the photographer and hands over the ears to protect from sound that no one else noticed..

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Well, whatever she heard was pretty funny!

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10.27.14 Congrats!

Congrats to Searcy Kelly and her husband on their new baby boy who was born this morning!

Do you remember? Were you following back then? Kori and I stayed with them and their daughters in Mobile AL for a couple of days in May, the 5-6 to be exact. Searcy was prego then obviously, but still early on. She was showing more at the convention in July.

When mom told me that Chip was born my first thought was “that was fast!” then I realized that was like almost 6 months ago!

10.24.14 Jacey

My little girlfriend is having some tests done at CHOP today and needs to go under general anesthesia. Please pray she recovers quickly, for good results and for a skilled team of doctors and nurses.

Jacey

An update from about 8pm… She’s developed a high fever that is managable with Tylenol and they are looking for the cause. Her heart rate keeps spiking so they are watching her closely. Overall though she is doing ok…

She is home now and doing much better! She and her mom can rest now.

10.23.14 “…When…”

“You know your child has Williams Syndrome when…” Do ya think there’s a pattern here? (bhahahaha)

When you’re out in public and a ton of people whom you do not even know say “Hi, (child’s name)!” Of course, concerned mom asks “Who was that?” and the reply is so casual: “Oh, Miss Mary from the library,” or “Bryce from swimming lessons,” or “I met her once at the one thing we did a long time ago”…

When your food has mold on it by the time you get to the other side of the grocery store because she has to talk to EVERYONE!

When your known as “Jared’s mom” and it takes 30 minutes to leave church because he talks to and hugs everyone and everywhere you go, people stop you and tell you how adorable your child is. (Love him!)

Hi my name is “Megan” I have Williams syndrome! (Holy Toledo!)

When he is able to identify a mower part that a neighbor couldn’t (while neighbor was repairing his mower) because he watches so many videos about mowers on Youtube……..

When he talks the same neighbor into letting him mow every week…..

When he knows how to prime and start up the neighbor’s weed whacker because of the many weed whacker videos he watches…..LOL

She never meets a stranger. And she always refers to the store as the commercial catch phrase. “let’s go to subway eat fresh!”

When your child bluntly ask the lady at the check out why do you have the ball on your face with hair sticking out of it??? (Hairy mole -I think) and keeps staring at it the whole time we are getting rung up!! Talk about embarrassing. I wanted to find the closest hole and crawl into it

When you wake up to the sound of church bells or police sirens coming from your computer. (I know this one too well and its not even about Jake!)

When (son) is the star of the dance when he takes over the dance floor with his Elvis and break dancing moves.

When your son runs to a man hugging him. The man has white hair and a white beard and your son is yelling I love you Kenny Rogers (OMG hashahahaha)

When your toddler says to every male stranger… “hi dad!”

When you get a “good morning mommy” from a teenager.

When you go to a school office for a younger sibling and they ask about (older son) even though it has been 5 years since he went there.

When she says hi to every white hair male by saying ” Hi Grandpa” (Yup)

When even on the worst day your child makes you smile.

When they say bye or goodnight to everything – human and inanimate objects

When at the store (that would be the times he isn’t only crying and cussing) you have to tell him repeatedly “remember, we only say I love you to family!”

When you’re called by your child’s case manager at the high school to ask for your ‘okay’ for them to hold a lottery for all the paras who want to volunteer their time to be with your child at after-school activities…..then asked if you want to sign her up for extra activities so they all can have a turn to ‘hang out’ with her!

When before going out in public you have to say (for the thousandth time) “okay remember we don’t hug strangers and no they can’t come to our house”

She says hi to and hugs our vacuum (only when turned off and is in the closet)… Otherwise she is not a fan of it!

Your 32 year old daughter helps you clean out the fridge, and you have her smell the leftovers to see if they are bad. Her acute sense of smell is so helpful!

When you buy Miralax in bulk

When the Chick fil-a cow gives your kid a flower to keep him from crying that the cow is leaving. (hahahahahahaha)
Chic Filet

When the dentist gives him a timer to make sure he brushes for long enough, and he comes out of the bathroom proud as punch because he beat it!

He sings Elvis all day

How about: When you spend $12 on fancy, local, maple syrup, proceed to take a short walk, and return home to find the bottle has been completely consumed, quicker than a cheap can of soda (hahahaha he must have watch Elf, hahahaha)

When you child puts a lock on the family labtop that only a picture of her face will unlock and you and your husband STILL can’t get into the labtop unless you put her right in front! You then remember she’s only 4!

When your child is getting an IV put in while in the ER, is so scared but starts singing an Irish song because the nurse has an Irish name. And of course
makes friends with everyone in the ER!

When he can tell you by sound who makes a specific chain saw and what model it is.

When everyone that works at or for the school is in love with your child for the powerful hugs he/she gives all the time

When she knows all the worker at Walmart.

He obsessively stops up every toilet in the house by rolling the toilet paper off the roll till it’s gone

They kiss their ipod goodbye before going to sleep!!

When I see this smile every day… Nobody but WS sweethearts have a smile like this

Ok, today’s example…sitting in the dentist office while waiting for daddy to come out, he goes to the water fountain after being a little bundle of entertainment for everyone…oh NO! the water fountain is broke…and a random stranger offers him a whole unopened bottle of Dr. Pepper….then refuses to let me pay them for it and gives the money to (my son)….

Daughter is 2 and when my husband was with her the other day, she was refusing to eat and drink, and then she preceded to dump the milk (she was suppose to drink) all over her and him. He said he was starting to lose his patience. She smiled and blew him a kiss (as if she knew he was getting upset) and he said he couldn’t help but laugh.

When you ask the teacher to give you a small list with kids to invite for her bday party and she can’t narrow it down because she’s happens to be friends with the entire class!

When you move to a new area…and he knows everyone in the neighborhood by name before you even have your new address memorized.

When he starts bouncing up and then when he hears music, even if it’s just for ten seconds. And when he ALWAYS waves when he hears the words hi or goodbye (22 month old)

When your stood in the umpteenth lift (elevator)of the day and she can tell you who makes it and how many people it can hold (12 years old)

When he can tell you how many firestations are in the county, how many trucks are at each station, which color trucks are at each station, how high each ladder is, who has the most volunteers, who has which kind of siren (Federal Q2B etc) etc etc etc

When you cannot make it through a store without saying Hi ten million times to each and every person before leaving. And hearing hi back each time because not a single person can deny her adorable self

When your child says hi and bye to every single person you see in the grocery store making your grocery trip 20 minutes longer then usual.

When every department at the Children’s hospital knows you by name and offer to keep the extra child so you can nap while WS child has appt.

When he can tell by sound what big rig is behind you on the highway without even looking and when you look in the rear view mirror. He is right 100% of the time.

Everyone in the cardiology department looks forward to her visit, and some have “dibs” on taking care of your child with WS.

They draw straws at at the Cardiologist when (son) goes. (different parent than the line above)

When she walks into school and knows everyone’s name down to the custodians…I don’t I’ve heard any other kid call them by name!!

Can’t just “run into pet store” because she has to stop and pet every single dog that’s in there

Have to ask her what somebody’s name is because I can’t remember! !!!

You take them to a dance and all they care about is playing with the fog machine, lol. (son, 15)

When u have all the teachers from different grades tell me what a joy (daughter) is. She always puts a smile on their face when they are having a bad day.

When you leave a store, everybody at the checkout stands is looking at the ceiling because your son told them one of their fluorescent tubes or high-pressure sodium bulbs was burned out (Oh, and there is one flickering on aisle 5). (Can you guess who this is? Were you paying attention to the dedications? hahahaha)

When the gym teacher asks your child what song to put on for warm up..she usually chooses Lady Gaga, Michael Jackson, or Pink. Then he tells me he just loves listening to her sing “so what” by Pink or dance like Michael in “Thriller” or “Beat it”

Our Pharmacist was asking (son) about Halloween trying to get him to mention “frickenstein” … when he proceeded to ask her if she has seen the movie with the 3 w(with his speech sounds like a b) itches… she died laughing.. threw her hands up in the air and said she was done!! sooo comical (hahaha were you paying attention to previous posts? Do you remember who this guy is?)

They take their first steps to go greet random strangers in the therapy lobby…

You have a TON of sticks and branches in your yard nicely stacked because your son collects fallen wood from around the neighborhood after each storm. The neighbors all come back to get it for their fireplaces in the fall.

Thanks to all the parents who responded on fb to the question…These are the responses in 12 hours, all but 2 are from different parents.