Keep Praying for Ashley's Family

I'm SO mad!

Tonight we met my sweet great niece, Avery Hope,  for the first time.  I took the most beautiful picture of her and Tarenne together. They were BOTH looking right at the camera and looked breathtaking!

On this memory card I also had some pictures from the girls' recital Friday night when I was a backstage Mom.  I had the perfect picture for the Buddy Walk Time Square Video contest.  I also had the video shot from the side of the stage where she danced perfectly!

And I flippin' accidentally reformatted the card. UGH! Gone, gone, gone. I love digital cameras, and then I hate them too!

Packing for the Visitor

We are a mentor family for the University of Kentucky. We host medical students and seminary students for 2 programs that are intended to help them see a realistic picture of the lives of people who have Down syndrome.

Tuesday night we had a great gal come over who is going to be an OB/GYN. The bad part about the program is that the future doctors who don't really need the sensitivity training are the ones who follow through and keep their appointments with the families. This girl fell into that category, she is an incredible person and we had fun with her. The girls did not want her to go.

She went out to eat with us and as we were getting ready to leave for the restaurant, Tarenne ran back to our room for a few minutes with Sarah's binder.

When she came back she sweetly had a bag packed for Sarah. The binder along with a DVD I was letting her borrow were placed nicely into a Libby Lu backpack. I opened it up to see what else my girl placed in there.
These are the items that Tarenne thought might be helpful for a future doctor:

• a pair of my pajama bottoms
• Joe's  underwear
• a bra I had hanging up to dry (it was still a bit damp)
• toothbrush
• tooth flosser
• toothpaste
• t-shirt

Maybe if her medical career doesn't work out she'll be ready to spend the  night with a cute little 2nd grader!

Emery and Tarenne ~ My Dancers

Come on People Just Leave Her Alone!

I know you mean well, and perhaps there will be a time when my girl actually does need your help. But when I stop to think about what my little girl goes through on a regular basis I have to first stand up for her. Would you stop her if she were a typical 8 year old girl? I don't think so.

Saturday was Emery and Tarenne's recital. I was dropping Emery at her back stage room and signing her in when Tarenne asked me if she could go out into the hall. I told her sure, but stay close by. I saw a woman immediately try to stop her as she got out the door and I stuck my head out and said, "She's okay." I finished signing Em in and walked out into the hall to see that the lady had followed Tarenne down the hall and was talking to her telling her to come back down the hall. I smiled at her and said, "She's fine, I told her she could come out." I mean I know she was trying to help, but poor Tarenne, doesn't she deserve the same respect as all the other girls in her class who too were wondering in the hall? The lady told me that she was Tarenne's backstage Mom. Tarenne looked at her, then at me and said, "Mom, she's mean!" I smiled and said, she knows the other Mom, I'm sure she'll be fine. Then when she realized where I was coming from she admitted, "Well good for her, she doesn't know me, I don't blame her for not wanting to come with me." I just finished with, "Well I had just told her she could come into the hallway."

Then on Sunday after I dropped Emery at her class I was walking down the upper hallway when I saw Tarenne walking from the elementary class toward Marley's class where Joe was dropping Marley off. I saw a lady stop Tarenne. I walked down the stairs to them, and Tarenne said, "Mom, I don't know where I'm supposed to be." The lady just smiled at me like she had really helped us out. I continued my conversation with Tarenne, "You were going to get Daddy weren't you?"
"Yes Mom!"
"Well let's go find where you are supposed to be."

Last night I was telling Joe about this and told him how much I felt for Tarenne. That even though she KNOWS what she is doing and where she is supposed to be or where she is going those around her assume she doesn't. I said I want to get her a shirt that says, "I'm capable thank you" and then on the back put "Mom and Dad Say So!".

I had to laugh when tonight I went to Dave Hingsburger's blog and read about a young adult with T21 who has found her own solution to this annoyance. You should go read it: www.davehingsburger.blogspot.com

Tragic Loss

A couple that we used to run around with has suffered an unimaginable loss.  Their daughter Ashley drowned in a neighbor's pool Sunday evening.  Ashley has a twin Alexis who will need our non-stop prayers along with her parents Barry and Michele.  Please help me lift this family up to our Lord for peace and healing.  To get to know Ashley better and read the details of what took place, you can visit http://adventuresinautism.blogspot.com/.

The Brocks moved from Kentucky to Maine after Ashley's diagnosis of autism to provide her with the best care and treatment. This little girl was loved and adored by many. It's hard to make sense of this world sometimes!

I'm Here!

Thanks Stella for your concern. :)

Joe's parents were here this weekend to visit. The girls had recitals on Friday and Saturday with rehearsal on Thursday evening. They were adorable and Friday night Tarenne performed perfectly! :) Saturday she was wonderful too but not as perfect with her timing. That however is the day that I got video from the front. I have video of Friday night from backstage. I'll share that soon.

Tarenne had pictures for T-ball on Saturday, and I have some funny video to share when I have time.

I'm also doing a fund raiser at the girls school for our Down syndrome association.

And lastly I had to resize 16 inflatable cheese hats for Tarenne's class play. LOL

GO OBAMA! 

I can't wait to vote tomorrow!

Darrah is Exceptional

and I am thankful that she knows her little sister Tarenne is too!  I was disappointed that she didn't do the dedication at the beginning of the song, like she was supposed to, but she lost her nerve. Tarenne however DID know that Darrah was singing to her. :) Forgive the occasional camera shake as Tarenne kept leaning on me. And the BIG camera shake when Lysee wakes up and I am asking someone to grab her. :) We really do need a REAL video camera, but I am thankful that my still camera has this option even if the picture isn't so great!

G. K. Chesterton

There are two ways to get enough: One is to accumulate more and more; the other is to desire less.

Happy Mother's Day

I saw this on Wednesday and was saving it for tomorrow. However after today (see below) I am afraid I'll be too exhausted to even pick up the computer. So here you go, my Happy Mother's Day to you....through somebody else. :)

Cardinal Hill Creates Chaos for Families

I wanted to post the first part of my friend's story, that I didn't have earlier in the week. It's such an important message to be heard. I think the greatest part is that we as parents DO have power in our children's education. Even if we seem to lose sometimes, we can get the message out when we are deceived or ill served. If we band together we CAN create change!

Courtney and I have known each other since Sam was born. She is an incredible advocate for our community. She spent a lot of time raising money to help save this program for her son, and the administration has made it impossible for the families to remain committed.

~Click here for more~

My Day

Well Darrah's birthday on Thursday was crazy too, so I'll start there:

I took her lunch and cupcakes to school. Then she had a hair cut, guitar lessons, and a soccer game in the POURING rain after school.  Joe was gone so the poor sisters had to stay in the van during the lesson and game.  YUCK for them!

Can't forget Friday either, it was Darrah's big talent show and then the Spring Picnic at their school, after which we had a slumber party with 3 of Darrah's best friends to celebrate her birthday. (in which I donned the blonde Sharpay wig from Libby Lu's and become "Lois" the waitress)

And today Joe was out of town, but we managed to:

• Awaken from a slumber party for Darrah's birthday 
  
• Go to Katie's at 8:40 so that she could follow us to the Down syndrome Association's meeting where she had sweetly agreed to talk about having Tarenne is Kindergarten and what good inclusion looks like in a classroom
  
• Leave there and go to Tarenne's t-ball game (thank goodness it was Toyota's sponsor day and they were serving free lunch)
• Head to the mall to buy birthday presents for twins because Darrah had a birthday party to go to
• Drop Tarenne at dance
• Go to Darrah's guitar recital
• Take Darrah home to change & then to the birthday party
• Go back to the dance studio for Emery's class and to pick up Tarenne

And then FINALLY home for an exhausted nap.

Ah, but these are the best days of my life!  ;)

Celebrating Darrah's First Decade!

I have been working non stop on a video montage for my girl to honor her life.  But alas, I'm only thru her 4th birthday. I will post it when I FINALLY finish it over the weekend.

She is truly a joy to mother, and a great friend to me as well.  

Happy Birthday to my angel!

A Friend's Fight Ends In Disappointment

A close friend of mine led a crusade to help save her son's preschool after it looked like the funding would not be there to continue it.   After months of hard work the CEO of Cardinal Hill, the facility that runs the program,  raised tuition just for the children that had special needs.  After the families questioned the ethics of this, the same letter including the rate increases went out to the typcial kids' families as well....a month later.

The teachers and most of the students will not be returning next year.  My friend Courtney, put a lot of time and her heart into this endeavor.  

You can read the article on the news channel's web site.  You can also watch the video where you will get to meet my friend and the other parents who have advocated so hard for their kiddos.

 

Click here!

A Friend's Writing

I was touched this morning by the following post and wanted to share it with you all.  

Got Snow

Two Tarenne Funnies

From bags to buckets.  Tarenne has taken over Marley's pack rat tendencies and has been carrying lots of bags around.  I guess her back started hurting because she has put them all in this bucket and is now pushing it around.

This is Tarenne's "ice cream" that she made while Pepere was babysitting yesterday.  I think it may have a little of Lysee's formula in it.  I'm glad there wasn't much left. :) 

Beyond the Evening Star Theatre (B.E.S.T.)

http://www.kansascity.com/static/Entertainment/050208_BEST_STARMAG/
This is an incredible short video. Please watch it!

And here is the performace troupe's web site:
http://www.thebestnetwork.org/

Videos of Tarenne at T-ball

Tarenne really likes her Buddy! (thank goodness) On the way into the park another team was doing the "Let's Go Orioles" cheer and Tarenne crossed her arms and said, "I hate that let's go". So every chance I got I cheered for her like that. She was very tickled!



Tarenne's first time up at bat


Her buddy wasn't helping her pay attention to the fact that the others were advancing bases. LOL At one time 3 of them scored at once!


Tarenne scores!

Tarenne M**** is steeeeaaaaallllling center field!

We are playing in the Miracle League for the first time. It is a BLAST!  Everyone wins and everyone has fun.  We are always so busy trying to get our kids who have disabilities to conform to society's norms that it is great to have a place where they can simply do what they want and be themselves.

The gentleman who calls the games is the voice of UK Baseball so he is very professional and it sounds like a Professional baseball game! 

And yes, T did steal center field. LOL She was bored waiting for the ball and so went on out to center field to read the signage.  She needs to know what sponsors to thank after the game right? 

Her game was rained out today, these pictures are from last weekend.  She loved her buddy and had a blast!

Funny Girls

This picture is from Em's birthday party. I'm just trying to figure out my new computer still and came across this. I thought it was too cute not to share. Tarenne was trying to make Em laugh and was saying that she was the present. As you can see by Em's expression she thought T was pretty funny!

Eight Belles Euthanized

Okay that was THE saddest Derby I have ever watched. I know they don't want to focus on the negative because the Kentucky Derby is supposed to be a time of joy, but I think it shows just how the horse industry is simply a business.

We had many tears in our home for the beautiful girl that ran such a great race. And for us Derby 134 will always be about this tremendous loss. To see this beautiful horse go here.

And the Other Model!

The Model

I Hate That Baby Talk

Blogging Against Disablism Day

From Mom:  "Mascotting" can be malicious. So many people approach people that have T21 with an open heart but tend to have that "aren't they cute" mentality.  I may not have ever realized how damaging that can be until my own little girl showed me how much she understands it and just how much she hates it!  People with MR may be amusing in their innocence at times, however there has to be a movement towards full respect in our society.  My child is going to demand it! The essay below is composed of ideas and thoughts that she has shared with me in pieces. It is written by me, for Tarenne.

My name is Tarenne and I'm 8 years old.  I have green eyes, brown hair, I love Zack and Cody, Hannah Montanna, to sing to myself in my room, and sometimes I even love to play with my 3 sisters.  I am really nice and funny, and some people say I'm sassy.  

I take dance lessons, swimming and play T-ball.  

My best friend's name is Allie.  She's short like me, and we laugh together a lot! Sometimes we even get into trouble in school for talking and laughing.

I don't like Kaleigh because she picks on me.  My Mom says she's a bully.  I get mad when she is mean to me! But I still like going to school even when she's not nice.  I like school, even though I hate math.  It is just so hard for me!

Sometimes my friends can't understand my words but I'm going to speech with Mrs. Sterry to help me talk better.  I try really hard!  I hardly ever get mad at people anymore when they don't understand.  I just tell them never mind.  I used to try to talk louder because I thought they just couldn't hear me, but Mom helped me figure out that she could HEAR me she just didn't understand.  Sometimes I like to tease her and make her guess lots of different things before I tell her what I really said.  She thinks I'm funny!  She's my "BF" and we have a lot of fun together!

When  I was in Mom's tummy she found out that I had Down syndrome.  Mom and Dad tell me that I am special and that is how God made me.  I think I'm pretty special too! I don't like for people to help me do anything, because I'm big, I'm 8 and I can do it myself!

Sometimes people treat me like I'm not big and it gets on my nerves.  I especially hate baby talk!   I tell people that all of the time.  One time Mom got upset with me because I told a girl that I hated her baby talk, but Mom said she was just talking in her normal voice.  How was I supposed to know?  Every since I was little people have tried to act like I'm littler than they are.  Even in Kindergarten when I wasn't much shorter, they would bend down and put their hands on their knees and talk to me like I was a baby.  They looked so stupid and I would just roll my eyes at them.  I am the same age as the kids in my class and it drives me crazy that they want to baby me.  So I say to them, "I hate that baby talk!"

That's why I like to play with the boys.  They don't talk as much, we just play! We play Spider Man and chase and they don't treat me like I'm a baby.  They don't even mind when I hold their hand.  They know that Zack and Cody are my boy friends, and they are just my friends.

I love seeing other people who have Down syndrome and I get to all of the time.  I have books and movies and art and music, all with people who have Down syndrome just like me.  I don't mind having Down syndrome at all.  I'm just a little girl and I just want people to realize how cool I am!  Because I am!  I really like to yell, "Down syndrome rocks baby!" when I see my friends who are like me.  

If you're not like me, then just think about this, you really ARE like me, and I'm really AM smart! Don't baby talk me, and maybe I'll be your friend!  Then you would be really lucky!

To recognize the signs of God, pay attention to your stirrings.  Look closely when you feel the swell of joy within or the tightness as your throat closes up in sorrow.  Live in that moment, poke around it its corners, and feel the texture of its walls.  Sit with it for awhile, long enough to sense the presence of God sitting with you.

~ Author Unknown

Meaningful Award

Thank you Michelle at Elliot's Expeditions for giving me this award! Sounds like the start of an Emmy speech doesn't it. LOL

I would like to pass it on to:

Jan at Mauzy's Musings, Shannon at Gabi's World and Betsy at Bits of Betsy.

I'll leave it at just them so that they can pass it on to the rest of my regular "pass it on to's". :)

Thanks Michelle, you are a sweety!

Rose and Emilee's Appointment News

Please keep praying!

Rose was diagnosed with rheumatoid juvenile arthritis. :( I am so sad for my girl. Please pray that they can control this and there will not be any long term damage or effects.

Emilee's seizures have greatly improved however they did have to increase her medication which Randy says makes her VERY tired! Please pray these end quickly and that our baby can come off the meds and start catching up developmentally.

Thanks so much!

Souljah Girl

The following video has been removed due to Darrah's disgust that Mommy would leave it up after learning of it's sexual content.  Yes, I'm raising a REALLY good girl!

The funniest thing to me about this video is that when this song first came out I found the tutorial on You Tube and was dancing my pants off having a blast. I asked Darrah to join me and she looked at me like I was crazy. She said she did not like the song at all and she definitely did not like her Momma's moves. LOL So I HAVE to share this, even if it's against her will. Maybe I'll video myself next. Now that would be funny!

PS Okay maybe the funniest thing is that I didn't know this was a dirty song until Debbie just emailed me to tell me. Thanks Debbie. I'll leave it up because...well it's done and you adults need a good smile. :)

Disclaimer: Mommy is a big dummy, who just loves rap and dancing!

And Shorty Got Low, low, low, low

Just In Case You Were Worried

At this point I am not sure who I shared with, so I'm just going to post it here to alleviate any worry. And also because it's too dang funny not to share.

About 5 weeks ago I found a lump in my breast.  I honestly thought it was because I am most likely pre menopausal, based on several symptoms I am having.  Darrah and I laughed when I told her that she would be starting her cycle and I would be losing mine right around the same time. ;-)

Anyhow, off to the doctor I went.  She too felt the lump and scheduled me for a mammogram along with an ultrasound for last Friday.  She tended to agree with my diagnosis but didn't want to take chances.

Obviously I was not too worried because I had forgotten all about it until I got a note from a friend telling me she was thinking of me that day.  Thank goodness I have brilliant, well organized minds around me because mine certainly no longer falls into that category.  Luckily my appointment was in the afternoon, much after I got the note.

Off I went to the Women's Breast Care Center with Lysee in tow and Emery in my Father's care. (Thank goodness for my precious Dad)  The receptionist sweetly held Lysee for me while I had the mammogram done.  Another waiting patient said sweetly, "Well you can tell she's a Mommy's girl" when Lou leapt into my arms on my return.  I shared with her that she was not my daughter and she answered, "Oh is she your granddaughter?"  I started to become highly insulted until I realized that my own sister is a Grandmother and looks no older than I do. :-)

I joked with the technician that after nursing for 6+ years you would think I would definitely be protected from breast cancer as it is supposed to lower your risk.  We also laughed when she asked me if I had lost weight since my last mammogram as my breast looked smaller than it did on the films.  I assured her I had not and then we realized that she was looking at my left one on the film and my right one was displayed.  I'm quite disproportioned as Darrah slept with us and nursed thru the night on my left side. Too much information? Just keep reading!

So after having my breast smushed and twisted I was sent to have an ultrasound done on it. Interesting when  the only ultrasound you have ever seen displays your baby for the first time.  Okay so maybe I should say this one was NOT interesting.  The ultrasound tech told me that she was pretty sure I was dealing with what is called a palpable ridge.  Once your fat thins out you can simply feel more....ie: once you start to sag things just change under your fingertips.

I went in to the exam room later to meet with doctor for the final results.  However the ultrasound tech's diagnosis was confirmed before the doctor ever entered the room.  As I sat waiting I looked at the ultrasound monitor and read in large letters SAG.  The doctor didn't even need to come in.  Any pride I had regarding my breasts had vanished.  I'm not sure if that was an acronym for something else, but whatever it was....they need to change it!

Oh and yes...it was indeed a palpable ridge.

qq qq qq qq qq qq qq qq qq qq qq qq qq

And while we are on the subject of boobs, I forgot to share this story.  A few Sunday's ago Tarenne and I went to an appreciation dinner for our DS Association.  Tarenne filled out our name tags and decided we should be each other.  After laughing she quickly fixed the names and slapped the one that said "Mom" right on my breast.  Only it was upside down and it read, "Wow".  I laughed and quipped to my friend that maybe 20 years ago I could have pulled that off but I definitely needed to fix it!

I've been tagged!

Cynthia at MeAnderings has tagged me. Here is how to play:
Rules:
Link back to the person that tagged you
Post these rule on your blog
Share six unimportant things about yourself
Tag six people at the end of your entry.

1. I've always liked short and stocky men (then I married one)
2. Our living room furniture is as old as our relationship
3. I used to hate the color pink and hearts
4. I used to drive a forklift
5. I rarely look in the mirror throughout the day (so please tell me if I have a booger hanging)
6. It drives Joe nuts because I always miss the corners of my mouth when using a napkin

And I am tagging

• Jan at Mauzy's Musings
• Betsy at Bits of Betsy
• Laura at Now I'm A Mom
• Kei at Unlimited
• Karen at Chewymom
• Tara Marie at Emma Sage

Please Help Me Pray for Emilee and Rose Today

Em is going to Cleveland to be rechecked for seizure activity. They will decide the next course of action. Pray for the doctors to have knowledge and insight.

Our little friend Rose is having some signs of arthritis and will be seeing a rheumatologist today in Cinci. Please pray that they can find whatever is causing her pain.

Also Erin will be seen on May 6 by a neurologist at Riley and will have her MRI on the 15th. I will remind you again to pray when it's closer, but so many of emailed to see if we have heard anything else.

Thank you so much for your love and concern for our family and friends!

My Beautiful Girls

Marley My Teacher

Last night the whole family played on the trampoline together and it ended with the girls and I laying down in a big mass of femininity and Joe jumping by us bouncing us all over the place with his testosterone. :)   

As Joe was putting them to bed he asked them what their favorite part of the night was.  Marley answered,  "Just being all together, the whole family."

Then when I was praying with her she asked the Lord to give us "more nights like this, and I really liked looking at the dandelions with Mommy."

What lessons she taught me!  Today at church the sermon made me realize that I have the privilege to love them with Jesus like love and unfortunately I spend way more time reprimanding than I do playing.  So this week, I want to play more!

Thanks Marley for making Mommy think!

She is truly an angel!

Tarenne's Poetry

T's class just finished up a poetry unit at school and I just had to share it with you.

This is an acrostic w/the 1st letters spelling cabin from our spring break stay. :)

Cool and fun

All rode the 4 wheeler

Bunkbeds

I went hiking

Now I want to go back

This next one she had to fill in the bold words. 

I have green eyes, like a tree

I have brown hair like dogs mom.

And then my favorite:

Tarenne

funny   happy

singing playing drawing

I like watching TV.

girl