World Down Syndrome Day

I wrote a note to Lila's teacher requesting to visit the classroom on World Down Syndrome Day
3/21/2012
 to share treats and read a book about Down Syndrome
 to the class. 
 I also requested permission to send a letter
 to the parents of each student
 introducing Lila and telling a little about her
 with some facts about DS on the opposite side of the letter.

  
I sent a letter to each of the parents of the students 
in Lila's typical preschool class last year.  
Every parent responded. 
 Every response was positive.


I sent the request in Lila's backpack this morning.
This afternoon, when I picked her up,
her teacher told me that she would be thrilled if I came in and read a book to her students.
I will have to submit my letter in advance to get approval
from the office before it can be sent home with the students.

She said yes.

 I am nervous.
 I will be nervous.
 But I'm so happy that she said yes. 
 I'm stepping outside of my comfort zone.
 For my girls
And all of our friends with Down Syndrome
Who deserve to be recognized
 To be celebrated
 

 
To spread the word that individuals with Down Syndrome are
 capable
unique
 determined
 brave
kind
 dedicated
 inspiring
 valued
gifted
 cherished...
 The list goes on and on.


I am a small-time blogger.
 I don't have a huge following.
 But I know that taking the time
to tell our story
has touched a few people.
From time to time I get e-mails from new parents 
and parents that
have received a prenatal diagnosis of Down Syndrome
telling me that our normal life portrayed on my blog
brings them hope and comfort.

 
 I got an e-mail this week from a family who had just delivered their baby with DS.
 They told me that after they got their prenatal diagnosis of DS they stalked my blog.
They said it brought them hope and a sense of calm.
 If that's the only e-mail I get all year
 that's enough for me.


Not all of us can do great things.  But we can do small things with great love.  ~ Mother Teresa


We all have a story to tell.
We all have something to contribute.
 We all have a voice.
If we all work together we will raise awareness
that people with Down Syndrome are
more alike than different and
have lives worth living
 
Let's make our voices heard on
World Down Syndrome Day
3/21/2012
We have 21 days to make it happen! 

 If you are looking for facts to share about DS
on World Down Syndrome Day,
check out these links:



Going with the flow

I wasn't really finished with my post last night, 
I just needed to go to bed.  
I'm so thankful that I did.   
Lila was having a hard time this morning
knowing that she was headed to yet another new class.  
She didn't want to put her boots on 
or brush her teeth. 
 She told me she wanted to stay home 
with me and Baby Wexi.

I hugged her and told her it would be ok, 
that she would love her new teacher 
and meet nice new friends, 
whispering a prayer that my words 
would turn out to be true.  

I put her in the car and we sang songs all the way to school.  
By the time we got there she told me she was happy.  
I love hearing that. 
 She says it about three times a day now. 
 "I happy, Mama.  You happy?"  
And if I'm not happy at that very second
 her words remind me that I ought to be
 and I say, "Yes, Lila, I'm happy too.  
I'm the luckiest mama in the whole world."

When we went in to the school, 
she already knew the way to her new class 
as it is right across the hall from her old one.  
Her teacher was waiting by the door for her.  
She got down on her level and told her 
she was glad she was in her class.  
Lila said, "I happy too."

It's going to be ok.  
It's probably harder on me than it is on her.  
She's so good at going with the flow. 
 I am learning from her.

She can go from this

 to this
In about 3 seconds 

Back to happy
Dancing her way through it all.

That's how she lives her life. 
 She doesn't hold grudges. 
She looks for the good in people and finds it. 
 People feel sorry for her because she has a disability.  
They shouldn't. 
 She's leading the way, teaching as she goes.  
She's happy.

I'm the luckiest mama in the whole world.

Crazy, beautiful life

I'm so thankful for this crazy, beautiful life we are living.

We have definitely had some bumps in the road 
here in Colorado
 but life is good and we are doing well.

Some things that have been happening around here,
 in no particular order. 

Lexi is trying to stand up on her own.  
She tries to climb up on everything. 
She's not satisfied with just crawling.  
She's been doing that for about a month now.  
She's bored with it.

 What?  Surprised to see me crawling through this tunnel?
 I'm awesome at it!
 Success!

Lila's imagination is soaring.  
She has two Little People that are her "kids".  
  She doesn't like to go to bed without knowing 
where they are. 
   She introduced them to Maggie and Justin 
the other day on Skype.  
It was too cute. 

She also has "friends".   
Buzz Lightyear, Jessie, Jessie's hat, another Jessie, 
Simba and Nala. 
 Don't mistake them for her kids.  
They are just friends.  
They all sleep together on a chair in the bed 
Daddy made for them.


It was nice outside on Sunday so we took the girls outside.  
It was a bit windy.
 Lexi wasn't exactly thrilled.
Lila loved it.
 

We had a really nice weekend.

Lila was a big helper at dinner tonight
Her specialty?
Gluten-free Mexican pizza
 
Somebody call the health department~
She needs a hair net 
Stat

 

Tomorrow it's back to work and back to school.
Lila is starting a half-day kindergarten class
instead of full day.
She had been resting from 1 o'clock until the end of the day.

She's at the end of her IVIG cycle
and seems to be tiring more easily here in Colorado.
We've only been here for two months.
 We will see what happens.

Tif is working as a para-professional
in Special Education 
at a local middle school.
She loves it.
She is also working part-time
working with individuals with disabilities.
So proud of her!

I have to get up at 5:30 am so I'd better get to bed.
If you know me, you know how much I love to sleep.
Getting up at 5:30 am isn't pretty 
but it leaves me plenty of time to get ready
 before the girls get up.
Much less stress for everyone.

A peaceful house is a beautiful thing.


Until next time~


Linda

Sunrise over Pikes Peak

I was up and showered before the sunrise this morning 
Which gave me the opportunity to go out on the deck
and catch some pictures of this amazing view. 


In my pj's.
And bare feet.
It was 21 degrees outside. 
It was a great experience until Lila decided to lock me out.
Love that kid.

Kindergarten!!!

Tomorrow is the big day!  Lila starts kindergarten at a new school tomorrow.  She will be attending a typical kindergarten class with some para support when she needs it.  
I am so excited.


It probably seems weird that she is starting kindergarten at a new school tomorrow 
when we have been in Colorado for over a month. 
It has been a bit of a journey.  

When we came to Colorado in early December on our house-hunting trip
I spoke with the Assistant Director of the Special Education department 
from the school district we wanted Lila to attend.  
We had a few phone conversations during the month of December
and Lila and I met with her when we first arrived in January.  
We thought we had everything in place!

Unfortunately, the temporary house we were leasing
was in a different school district.  
The lady that owns the house has grown kids 
and didn't have first-hand experience
but said that she regularly saw school buses 
from the district we had chosen.   
We should have double-checked.  
We didn't.

Imagine my disappointment
(shock, anger, tears) 
when I went to the district office to register Lila for school
and found out our house was
in a different district. 
Less than two blocks from the boundary.
Not the end of the world, for sure. 
But extremely disappointing.  
Especially after all the work I had done to make sure
everything was in order 
and Lila would be exactly where we thought she should be. 

The next day the girls and I were out and about 
when Tif and I decided to go to Starbucks.  
It was extremely cold- the wind was blowing like crazy.   
We decided that I would go in
and Tif would stay in the car with the little ones.  
When I walked in there was nobody in line.  
Awesome!  
Then I remembered I hadn't even asked Tif what she wanted.  
Feeling silly, I went into the bathroom to text her. 
She answered right away and I walked back out of the bathroom.  
To a line of 8 people.  
Wow.

I headed to the back of the line and realized that I was standing by the lady 
that Lila and I had met with from the Special Education department.  
Really?   
I asked her if she remembered me and she said, "Of course!  
You're Lila's mom!  I just can't remember your name."   
We chatted about what had happened, 
She was very supportive and encouraging. 
She even asked me if Tif had found a job.
I told her to keep Lila's file close because we were moving to her district. 
Soon.

I got back in the car and said to Tif,  "Do you believe in Divine Intervention?"  
I do.
I had been feeling pretty down about the situation.  
Feeling like I had failed my little girl.  
A chance meeting in Starbucks was all I needed to motivate me
and get me back on track.

Fast forward through crazy house hunting
bizarre wallpaper in one house, a huge 6 X 5 foot amphibian
cage in the living room of another.
And moving chaos.  
You don't wanna know.  

Well, maybe the wallpaper is worth sharing. 
I snapped a few shots with my cell phone. 
If you have wallpaper and love it- I'm sorry about the little detour in this post 
where I'm poking a bit of fun at the wallpaper.
I'm just not a wallpaper kinda girl.

 Powder room and Master Bathroom.  Nice, eh?

 Thanks to an old friend of mine who directed us to a military by owner website, 
we located the perfect house for us. 
As soon as I had a copy of the lease, 
I headed back to the district office
that I had left crying 
3 weeks ago.  
Success.
Lila was registered for school.

The school we requested is not Lila's home school.
It's the school that was part of the original plan.  
Out in the forest, where our first temporary house was.  
Where we love it.  
Where there are more trees than people. 
(Is that bad?)


They granted our request. 
Lila will be attending the school we chose for her.
I was happy. 
It felt like things were starting to come together.  
They called me from the school and asked if Lila and I 
wanted to come out for a tour of the school. 
The school among the trees.  


 They were so welcoming.  
They were expecting us 3 weeks ago, then they got the call that
it wasn't going to work out right now.
The lady giving us the tour said to Lila,
"We didn't expect to see you this year!" 
I just smiled.  
They don't know her mother.
 
I wasn't sure what to expect when Lila started school. 
We hadn't gotten to that point 3 weeks ago.
I knew what I had requested but I wasn't clear 
on the decision that had been made.  
So I asked. 
"Where will Lila be placed when she starts school on Thursday?"  
The woman who was giving us the tour is the 
head of  the special education program at the school.
She looked at me like she didn't understand the question.  
She asked me what I meant. 
I said, "Will Lila be in the typical kindergarten classroom?"  
She said, "Of course she will!  There is no reason for her not to be there." 

Then she went on to say, 
"We have a wonderful staff.  
The teachers here want all students to be 
included in their classrooms."

And you know what?  
I believe her.
The reputation of the school
backs up what she said.

I drove out of the parking lot
with happy tears in my eyes.
Feeling like our girl is 
right where she is supposed to be.
 
We are happy with her placement.
We are grateful for how things turned out.

Kindergarten is a pretty big thing!
She's ready.

There will be more quality time
with this one.

Which was also part of the original plan.


P.S.  Lila has been going to school during this time.
We gave the other school district a try.
It was a 3 hour a day, 4 day a week
preschool program.

It just wasn't right for our girl.