Sunday, October 31, 2010

31 for 21 Recap



I did it!  Blogged every single day of October for Down Syndrome awareness.  It's kind of sad that it is over.  I guess I do need to save some material for next year but that won't stop me from blogging a little here and there.

First of all, thank you to my little Claire Bear.  I am honored to be your mommy.  You are such a special girl.  Thank you for introducing me to this whole new beautiful world.  I love you.  I look forward to watching your  life unfold.

Thank you to my wonderful husband, Nate.  You are a gift from God and I am so grateful for you. I am blessed to be a part of your family.  It is exciting to see what God has made of our little life.  I couldn't do all this without you.

I also want to say thank you to everyone who read the blog and to those who commented.  It was SO ENCOURAGING to get all the positive feed back from friends, family, acquaintances and even complete strangers across the country (and even one fan from Ireland).

So to wrap this up here are some pictures of the our Halloween-a-thon weekend.

Makenna choosing what to wear to Claire's school party Saturday night, princess Elmo?

Ventriloquist fairy?


Claire decided on Cinderella.  "You get two candies for two fish." Pure joy!

Fishing at the school party.

Mermaid Makenna tossing a ball into the clown.

Getting dressed up for Sunday school, Makenna cow girl.

Claire went with the ballerina for church.

Off to a friends for Halloween night fun fun fun.  Makenna saying "apple."  She is a teenage mutant ninja turtle, Donatello.

Rylan was Leonardo.

Asher, AKA Micheal Angelo.

Zeke was Raphael.

And don't forget Elmo!

Makenna was off to get some candy.

So tired!

Not sure what she is doing but it's cute!

Back home, tuckered out!

Makenna is limp!

Had to wash off the green face paint though.  TURTLE POWER!!

Saturday, October 30, 2010

Typical

We went to Special Olympics practice again today and then to the last farmer's market, super sad, and lunch in Coeur d'Alene with some friends.  Claire and Makenna were so cute playing duck, duck, goose, dancing  and running the obstetrical course.  They LOVED IT! Now everyone is taking a late nap, I just woke up.  It's been a good day.

It's funny, when the oldest has Down Syndrome everything they do is normal, to you.  Now we have Makenna and everything she does is weird. 

Claire has no concept of mine, yours, ours.  It can be good when it comes to playing with other children.  She really doesn't mind sharing when a toddler takes her toy, however other children don't feel the same when she wants to "share" their toys.  Like yesterday when we were playing at the mall and she started pushing a stroller, baby and all, away.  Or when she drank an Orange Julius that did not belong to her.I talked to her about it, for the millionth time, "not Claire's," she just looks at me like I'm nuts.

On the other hand we have Makenna who's favorite game is labeling.  She walks around the house "Daddy's shoes, Makenna's baby, Sissy's shirt, Mommy's phone, Deacon's water (the dog)..."

 I guess it just took me a little by surprise how different parenting them is.  Bribing Claire is futile!  She really could care less if she gets a gummy bear for going potty.  Makenna, man, a good bribes is golden.  We were having the typical toddler problem of taking the shoes off in the car, something Clarie never really did.  One day I told her "no more movie if you take your shoes off," (we have a DVD player in the van) problem solved.

In retrospect, bribing your children isn't the best parenting method anyway.

Friday, October 29, 2010

Pumpkin Day

It was pumpkin day and the girls were excited to go pick one out.  We went to the grocery store this year because at our trip to Green Bluff Claire was having a very bad day.  It didn't stop me from pumpkin doughnuts and carmeled apples but no picking pumpkins.  They didn't seem to mind we were not in a field although it does make for cutter pictures out on the farm.


 Makenna loves the pumpkins!

Harvest House Pumpkin doughnuts are so good!!

 Daddy helps Claire open up the pumpkin.

 Makenna puts together pumpkin head.  I loved this little guy because it gave the girls something they could do with the pumpkin other than just scooping seeds.  These were special oversize pieces but you could do it with the regular potato pieces from home.    Just poke the holes in advance and let them play.

 Taking out the seeds.  Yes, we toasted and ate them, yummy! 2 teaspoons melted butter, sprinkling of salt and bake 300 for 45 minuets.

 Cheese, my cute little family!

 Tami (Me AKA Mommy) carves the pumpkin.

 Nate "has to use a power tool."  Successful, however, a huge mess.  I guess messes are what pumpkin day is for.

Our happy pumpkin.

Thursday, October 28, 2010

I Need You!

Yesterday I ran into a gal from high school I haven't seen in a good ten years.  Through the conversation she eventually figured out that my oldest is adopted and has Down Syndrome.  Typically this happens, "WOW" she says and is ready to nominate me for saint hood or at least parent of the year.  If only she knew how embarrassed I was just hours before at another friends house.  Claire refused to behave herself.  I would go to take her from time out and ask "are you ready to listen to Mommy?" "NO" she replies... three consecutive time outs later and I just didn't ask her and yes, she went right back to doing the naughty thing that got her put in time out to begin with.  Ahhhhhhh!

We are so so so far from having this whole thing figured out.  We are ordinary people blessed with AWESOME SUPPORT.  It's all I can do some days just to keep some level of calm and that I sometimes fail at.

I take my friends for granted so often and don't give them the credit they deserve.  We couldn't do this without you!  A friend of mine asked me for a list of "close friends and family."  It was amazing how quickly it multiplies into over 30 people.  I sat back and looked at their names, your names. I am so blessed!  God has given us such wonderful people to love and support us.  But more than that you challenge me and  keep me accountable for my selfish ways.  I love you friends!!

Wednesday, October 27, 2010

Tomato Street

We went to tomato street last night to celebrate my big accomplishment, blogging every day in October!  It was cheating a  little bit but I thought a Tuesday evening might be better then trying to go out to dinner on Halloween.

Makenna loves to draw like Mommy!

Claire can make a "C for Claire" 100% of the time, backwards.  We are working on counterclockwise.

Sisters

The beloved play-dough, she said "green!" 

The problem with play-dough when you are hungry.

 Clarie traces the monkey.

 Makenna chooses a color.

 Claire and Mommy's masterpiece.

 Makenna is excited, food has finally arrived.

 Blow, it's hot!

 Makenna loves the meatballs, Claire loves the noodles.

My plate after dinner.  I may have gone a little overboard on the tomato soup and bread.  I did get an awesome lunch today!

Tuesday, October 26, 2010

Out of Controle

Being brave with my life, it's a really good concept but one of the hardest things about it is the vulnerability.  My self-preservation says "back up the train!" but I have come to the conclusion that if I am going to do something worthwhile with my life it's probably going to feel like jumping off a cliff.  I want to see the hands beneath me, poised to catch me. 

Having Claire is teaching me to be, well, a little out of control.  I don't know what tomorrow is going to hold.  Infact, thinking about six months from now puts me into a bit of a panic attack.  I really can't hold this thing together on my own.

My life was really safe.  Some days I feel like I messed it all up but you know, that life wasn't very fulfilling.  I went through the motions, my predictable days and at the end of them I was exactly the same, or possibly more self absorbed.

I'm working on not having a clue, taking it out of my incapable hands and giving it to God.  So when my husband is gone (Air Force) and I want to scream you can all remind me.  At the bottom of the cliff there are beautiful, strong, invisible arms outstretched for me.

Monday, October 25, 2010

God Makes No Mistakes

 I don't quote scripture very often, but I just couldn't have said it any better.
1 O Lord, you have examined my heart
      and know everything about me.
    2 You know when I sit down or stand up.
      You know my thoughts even when I’m far away.
    3 You see me when I travel
      and when I rest at home.
      You know everything I do.
    4 You know what I am going to say
      even before I say it, Lord.
    5 You go before me and follow me.
      You place your hand of blessing on my head.
    6 Such knowledge is too wonderful for me,
      too great for me to understand!
    7 I can never escape from your Spirit!
      I can never get away from your presence!
    8 If I go up to heaven, you are there;
      if I go down to the grave,[a] you are there.
    9 If I ride the wings of the morning,
      if I dwell by the farthest oceans,
   10 even there your hand will guide me,
      and your strength will support me.
   11 I could ask the darkness to hide me
      and the light around me to become night—
      12 but even in darkness I cannot hide from you.
   To you the night shines as bright as day.
      Darkness and light are the same to you.
   13 You made all the delicate, inner parts of my body
      and knit me together in my mother’s womb.
   14 Thank you for making me so wonderfully complex!
      Your workmanship is marvelous—how well I know it.
   15 You watched me as I was being formed in utter seclusion,
      as I was woven together in the dark of the womb.
   16 You saw me before I was born.
      Every day of my life was recorded in your book.
   Every moment was laid out
      before a single day had passed.

   17 How precious are your thoughts about me,[b] O God.
      They cannot be numbered!
   18 I can’t even count them;
      they outnumber the grains of sand!
   And when I wake up,
      you are still with me!
   19 O God, if only you would destroy the wicked!
      Get out of my life, you murderers!
   20 They blaspheme you;
      your enemies misuse your name.
   21 O Lord, shouldn’t I hate those who hate you?
      Shouldn’t I despise those who oppose you?
   22 Yes, I hate them with total hatred,
      for your enemies are my enemies.
   23 Search me, O God, and know my heart;
      test me and know my anxious thoughts.
   24 Point out anything in me that offends you,
      and lead me along the path of everlasting life.

Psalm 139

Sunday, October 24, 2010

Everything I need

EVERYTHING I NEED I CAN BUY AT WAL MART, YES!!

When I took the girls to stay with my parents for the weekend it dawned on me.  I could forget something!  It would be okay, everything Claire needs to survive can be purchased at Wal Mart.  It sounds funny, but this is a huge mile stone.  One Thanksgiving something went wrong with her feeding tube and my mom and I had to drive to Spokane and back (4 hours) to get what we needed.  Apparently these kinds of pediatric medical supplies don't exist in small town hospitals, even in Moses Lake, which isn't that small.

It's a small thing but none the less, something to celebrate.
 WE HAVE COME SO FAR!

 Mom is so funny!

 "More" Claire's favorite word, before she discovered "No," more was cuter.

 We are learning to sing and sign.  P.S. I miss being skinny, 8 weeks left, ahhhhhhhhhh. 

Saturday, October 23, 2010

Every Beautiful Word

Claire's feeding problems have been resolved but the aftermath remains in a significant speech delay.  Well, that a thick, short tongue and low muscle tone in her entire mouth.  It's not at all that she doesn't understand language, she is a signing pro but it is really hard for her to get the words out.  I thought it was weird that a speech therapist would work on eating with small children but it all makes sense when you think about it.  Manipulating your tongue, lips and cheeks to eat and drink are the first steps in learning to talk.  They will uses those same skills to say their first words.  I couldn't get Claire to swallow drop of milk until after her first birthday.

Every single word is like sweet music.  I love her little voice and her little gestures.  I must admit, even when she is saying "NO," her favorite word at the moment, part of me is just grateful she said it so clearly. 

We moved her into an integrated classroom this year, hooray, and have seen a significant increase in her speech sense she started there.  Nothing like some good old pear pressure to get her to talk.

Go Claire go!!

Friday, October 22, 2010

My Stereotype

I just love this picture of Nate and the girls! 

There are lots of stereotypes the come along with Down Syndrome.  The only one I knew of Before we got Claire Bear was that "children with DS are lazy and unmotivated.  They are sweet but they just want to hang out all the time." NOT CLAIRE!

I have been impressed by they way she has broken this stereotype even in her therapists and doctors.  They will often tell me how amazed they are at her activity leave and stamina.   

Even Makenna struggles to keep up.  Claire's Physical therapist, the beloved Dave, had a student for the last few months so Claire got the work with her while Dave used Makenna as a test dummy to show the PT in training what to do.  Makenna thought it was the best thing ever, like she had been waiting her whole life to join in and this was her golden opportunity.  It was all very funny to watch..  About twenty minuets into the forty-five minuet toddler work out Claire was just getting wormed up and Makenna was begging for mercy, "all done", "bubbles please" (they use bubbles as a reward).

Thursday, October 21, 2010

"Lucky"

Claire and the huge zucchini we grew this year  

At the end of foster parent training, PRIDE, there is a panel of seasoned foster parents who come in and share their unique experiences with the class.  One took teens that often ran away, one took kids who were sexually aggressive, one took kids who were openly gay... A woman, who is now a friend of mine, came to talk about her experiences taking children who are medically fragile.  I turned to Nate and said "no way," shutting my mind off to the speaker.

It's now my mauto, just tell God what you will not do and inevitably he will make you do it.

My Mother-in-law took Claire first and we were going to be getting her six year old brother.  When that fell through I put all the big boy stuff away and set the room back up for a baby wundering how long it would take to get one.  I sat on the floor of our unknown child's room and prayed for them and for us.  The phone rang!  It was my mother-in-law.  She wanted us to take Claire.  I had babysat Claire one time in the two months she had been with them and it was the scariest job of my life.  I am not medically trained to take an infant that sick I thought but how could I deny God's timing in it all.  I knew in my heart that this was his plan. 
 
We get it all the time, "Claire is so luck to have you"and "you are such good people for taking her in."  I appreciate the kind words but that is not why we have Claire.  She is not charity, she is our daughter, a part of our forever family.  We know that she is ours as much as this baby growing inside me.  God has entrusted us with this precious gift and we are the lucky ones.

Wednesday, October 20, 2010

Bad Bad Habit

When you have a child with a disability you get used to people watching you and asking questions really fast; or you should because it's inevitable.  Most people are very kind and what to ask how old she is because let's face it, Claire is a bit or a shrimp.  It is usually a really good thing and we get to share about Claire and make new friends nearly every day but then there are the bad days.  People in Wal-Mart asking me "is she retarded?" Seriously guys!  It happens more then you would think.

One of the reasons I decided to do the 31 for 21 Blog is for this.  A friend of mine asked me "I know it's politically incorrect to say retarded, so do they use the word Down Syndrome now?"  Forget politically correct, calling someone retarded is crewel and Down Syndrome is completely different.  Yes, it's a medical diagnosis but somebody tell me the last time you heard the R word, was it in context?  I'm going to bet it wasn't.  

With compassion and understanding I know it's not to slam my daughter every time someone throw out that words but please, please think about it.  It's a bad habit for most of us, that's all.  Lets brake it!  Your parents said it, now you say it.  Lets stop it for our children.  They will say what they hear.

Tuesday, October 19, 2010

If She Didn't Have Down Syndrome


Little fingers and a chubby palms.  Sometimes it is hard for Claire to do things with her tiny hands.  She struggles to write, feed herself and pull up her little pants.  If she didn't have Down Syndrome she wouldn't have this problem. If she didn't have Down Syndrome she wouldn't have to try so hard in so many ways.

It is hard to watch your child struggle, to not fit it, to be misunderstood.  I could cry at the thought of all the trials she will face.  We fight every day to catch up, to not fall through the cracks.  Claire fights the hardest.  How will this life affect her?  Will she choose to be grateful or bitter?

It's a wondrous thing to be different.  Challenges can be embarrassed.  Most of us, myself included, spend way to much time trying to fit in.  Now, I like  the i Phone and Facebook as much as anyone but there is sometimes something disturbing about the little worlds we are plugged into 24/7.  I'm only seeing people who look like me, talk like me, act like me.  

Let's look around.  Do you like who you are?  Do you like what you see?  Well, I have good news for you.  You can change it!     

Claire reminds me, we were not made to all be the same.  We have gifts, challenges and talents hidden inside all for a purpose.  Quirky, cookey, crazy things on our minds.  It would be a shame to miss out on who God created us to be in an attempt to be someone else.