Sunday, December 29, 2013

Early Morning Musings

I went to bed an hour earlier than Jason and Emily did tonight, hoping to get some much needed sleep.

(Jason and Emily are a package deal.  Where Jason goes Emily goes.  And if Emily doesn't go where Jason goes, she spends the time she is separated from him saying and signing daddy.  If you didn't know her you wouldn't know she was saying daddy.  But there is no doubt that daddy is officially Em's first word.)



Emily bounced on me the minute Jason brought her upstairs and for some reason I can't get back to sleep.

I feel like this first post after the holiday should be a follow-up of all things Christmas, but it's not going to be.  Instead I'll share what I've been thinking about.

I went with my mom and my sisters to see Saving Mr. Banks tonight.
Have you seen it?
I loved it.
It's the story of how Marry Poppins came to be a movie, and it focuses on the writer of Mary Poppins - who isn't Walt Disney.

At one point in the show the writer of Mary Poppins is in a limo with the man who is assigned to be her driver.
The driver is telling her about his daughter who is handicapped in some way.
Later in the show Mrs. Mary Poppins (I can't remember her name) hands the driver a list of names.

"What is this?" he asked.

"It's a list of people who were all born with something - and every one of them achieved greatness.  You tell your daughter that she can be anyone she wants to be."

I have triggers that set off my emotions, and this simple exchange was one of those triggers.
It came after a week of other triggers, and I cried through the last half of the movie, and then through most of the drive home.

The first thing Jason said to me when I walked in tonight was, "You've been crying."

Emily has two cousins close to her age - two months younger and four months younger.
I love those girls - all three of them - but when they're all together it's a trigger.
Both of Em's cousins are speaking in full sentences, and are very much aware of the world around them.
The other night at a pre-wedding celebration for my uncle (hooray my uncle got married!) I watched as my niece put her plate down on a table and then scooped guacamole onto that plate, piled it high with chips, and walked into the other room to eat.

My heart hurts at the very obvious differences between Emily and every other two year old I know.
My heart hurts that Em falls into the category of special needs.
And my heart hurts sometimes when I think about Em's future: will she ever really talk?  Will she ever catch up developmentally?  Will people look at her and judge her for what they see as different? Will her heart really hold out long enough to give her a future?

And then I feel guilty for feeling those things - because it makes me feel ungrateful.
And I'm not.
I'm not ungrateful.
It seems that on a regular basis I read of another little one who has lost their fight to the same health issues/chromosome deletion that Emily has.
I read of little ones who have it so much worse than Emily does - who have to fight so much harder.
I read of the ache of so many who just want to be a mom.

I'm a mom - and Emily is alive - and she's happy - and she's mostly healthy right now - and ...

...and in spite of it all I still hurt - and I wonder if I'm the only mom who is unable to be at complete peace with the challenges her sweet little baby came here with.

Somehow tonight, that note from Mrs. Mary Poppins to her driver felt like it was meant for me.

"You tell your daughter that she can be anyone she wants to be."

And perhaps the lesson to be learned - again and again is - your daughter will be exactly who God meant for her to be.  And that's enough.













Friday, December 27, 2013

My New Favorite Family Picture


I'm here ... and we're well ... and I'll write ...

... just as soon as I dig out from Christmas ...




Friday, December 6, 2013

Illness Abounds

It might not surprise you to know that Emily has been sick.
Really sick.
She's been sick for about one hundred years now, but just recently things got worse.

When she had her last heart surgery her cardiologist told us that even if she got sick, Emily shouldn't need oxygen.
Normal blood oxygen levels are between 90 and 100.
Emily's went down as low 77 the other night, and when they stayed at 77 we bundled her up and took her to the ER.

It was 1:30 in the morning and about 7 degrees outside.
Fun times.

We were there for a few hours while they did a chest x-ray and gave her oxygen and then they sent us home.

Early the next morning we got a call from the cardiologist's office.
"Looks like we need to see Emily," was the first thing the secretary said.
(The ER had sent them a report.)

For months now we've been treating for both bronchitis and asthma - over and over and over again.
And all along the way I've asked if it could be related to Em's heart but mostly I've been told no.

The cardiologist thinks otherwise and we will see him Monday afternoon.
A part of me really hopes there is something going on with Emily's heart, if only because it would give us an answer finally - and maybe a direction to go to finally get her feeling better.

It's needless to say that Jason and Emily and I are all exhausted.
Last night was the first night in weeks that Emily slept mostly through the night.
Bless that girl - she can't get sick without her tummy getting the worst of things, and she throws up pretty regularly - all over us and our bed.

The night of the delightful ER visit Em threw up and instead of changing the sheets I just scrubbed them and then put a towel down so that I could have something dry to sleep on.

"You don't want to change the sheets?" Jason asked.  I just smiled and said "What's the point - I think we'll be going to the ER within the hour."

So - there you go.

Life.  Gosh it's fun!



Thursday, November 21, 2013

It's What Makes Her Happy

Here you go World - Emily's reaction to the bedding we got for her new bed.

Oh my - we love this girl!!!


Wednesday, November 20, 2013

Yard Sale - Blogger Style

Tacky? Maybe. 
But...I'm going to do it anyway. :)

I'm selling some jewelry and if any of you are interested I would be happy to mail something to you! 

These are $10.00 each



These are $20 per set


And these are $30 a set.

They are all sterling silver and really great quality. I love them all but I'm saving for something ... 

Here, I'll show you:


I'm half way there. 

...

Friends, we put Em's toddler bed in her room last night. 
I got a little emotional. 

Pictures to come - when I can get her to actually sleep in it! 

Sunday, November 17, 2013

Another Change

It seems I spend my life trying to create more space than we have in our home.
We really need to move into something a little bigger - something with an extra bedroom or two AND space for Jason's home office.
Right now our spare bedroom is Jason's home office and trust me when I tell you it's full to capacity.

I've spent a lot of time thinking and visualizing and looking online for ways to make what space we have more functional.

Here's what I came up with for our dining area:

Don't judge me too harshly for the before picture.  
When life and I get into an argument, life usually wins and things like an uncluttered kitchen table are far from my top priority.

BEFORE


AFTER


We gave the first table back to a friend who has been kind enough to let us use it for almost three years.
And we took the hutch apart and put the top part in Em's playroom for shelves, and the bottom part  in Jason's office for storage space.

Jason no longer has to use the kitchen table as his desk, and Emily gets space to move around.
It's a win/win for all of us.

In case there was any doubt who the one in charge is...


Next up is Emily's room and the change from a crib to a toddler bed.
Wish us all luck!







Monday, November 11, 2013

Just Stuff

I can count on one hand the number of days our little lady has felt well in the last...
...well, forever.

She felt okay in California - and she felt pretty good for a few days last week - but other than that she's mostly just miserable.

I'm going on 837 days of little to no sleep and it's beginning to get to me.

If Em wakes up and realizes that she's not in our bed she lets us know that she's not happy about it.
So at some point in the middle of the night she usually joins us and then spends the rest of the night whimpering and coughing and rolling around.

The last few mornings I've snuck down to the couch to get a couple of hours of sleep before she wakes up.

I  need to be more like Jason - he can sleep through anything!

Em is still cute though - that makes up for a lot of sleepless nights!


Oh... did I mention my sister had a beautiful baby girl?


It's an overwhelming group we're becoming - this family of mine.  
We're about out of room in any of our houses for all of us to fit.
That's a good problem to have.

I hope your days are filled with only good things friends!

...or at least that you can find one good thing in spite of things that might not be that great.


Thursday, October 31, 2013

Happy Halloween


The girl who took my engagement and wedding pictures pulled up at work just as I was trying to get some pictures of Emily.
She hadn't met Emily and came over with her camera.
"May I?" she asked.

These are the results, and I just can't stop crying.
Who cries on Halloween?

I'm just so overwhelmed with the love I have for this little girl...




Here's a PS.  We love this one too:



Tuesday, October 29, 2013

A Little Bit of a Makeover


I went to a furniture store last week to look for a sofa for my office - something simple.

I didn't find one, but I found many things that I loved - which is always a problem - isn't if for you too?
To find things that you love that cost lots of money or that you don't have room for or ...

I came home, took a look at my living room and said, "blah."

Here, let me show you what I loved:




Should I give credit for these designs?
I took all three pictures from a fun little store called Four Chairs.

So...

I went to some stores and got some ideas and one night at 11:00 I asked Jason to help me rearrange the furniture.
The rug and the yellow chair are new; some of the things on the piano are new; I hung some pictures and switched out some picture frames and...

I can't find a before picture of my living room but I'll show you an after shot:


I'm still working on curtains - I've been working on curtains for three years - it may be another three years before I find something I like.

And I'm working on maybe trying to talk Jason into letting me paint the piano but I'm not holding my breath!

We like the change - we like the feel - and we like that I didn't spent a million dollars.

What we like the most though?


Sunday, October 27, 2013

I'm Really Going To Try

...to keep this blog going.

But I just don't know if I have it in me to write anymore.

I'll give it one more best effort, but not tonight.
Because tonight Em's asleep, which means I can go to bed too.
And I'm sleepy.





Friday, October 18, 2013

This Girl Knows Her Stuff


Oh my iPad - what have we become?

(To make the situation worse, this picture was taken at 12:40 in the morning. Emily's clock is all messed up.) 


Sunday, October 13, 2013

All Good Things Come To An End


...late night walks on the boardwalk
bike rides to the laundromat at 10:00 at night just to get quarters...because I could
bike rides...long bike rides in the sun, in the sunset, along the ocean to the pier
walks on the beach
a day at Sea World with the sharks and the whales...and the sea lions, Emily's favorite



Mickey Mouse
Minnie Mouse
roller coasters
boat rides
Disneyland in the rain
swimming in the hotel swimming pools
late night hot tub runs
even a date night thanks to Aunt Becca

Our first family vacation was a perfect two weeks...
...I'm grateful to those who made it possible.










Wednesday, October 2, 2013

As I Sigh A Happy Sigh


We have...

sand everywhere
sun kissed cheeks
salty skin
wet clothes hanging out to dry
tired bodies
a girl in love with the ocean
and a happy little family

We needed this vacation.
I didn't realize just how much we needed it until tonight.

Jason and Emily and I were playing in the ocean...jumping into the waves and laughing as they crashed into us.
When a big wave would come towards us Jason would wrap us in his arms and say "hold on!"
And then as the water and seaweed wrapped around our legs we would squeal and laugh.

The joy on Emily's face...
The freedom, for just a few minutes, from the worry and stress left at home...
The love in our little family...

This little spot of the world is just like heaven.
I needed a slice of heaven.










Saturday, September 28, 2013

What Happens In Vegas...Is Really Not My Thing

It's my birthday today.
My 38th birthday.

I've learned a lot of things about life in the last 38 years.

Today though, I've learned something new.
Maybe it's not new...let me try this sentence again.

Today though, I've relearned one of the most important things there is to learn.

We're on the 42 floor of the Palazzo Hotel and Casino in Las Vegas.
It's the nicest hotel room I've ever stayed in.
I can look out our huge window and see the lights of the Las Vegas strip below.

Jason and Emily and I spent a few hours walking along the Vegas strip...we had a destination in mind but it was a lot farther away than we had planned when we started our sojourn.

We saw every type of person - saw more alcohol than I have ever seen in my life - and saw pictures thrown on the ground that can be described simply as pornographic.

We walked through casinos that were filled with people gambling and rode an elevator with some very drunk people.  It was in the middle of the afternoon.

Tonight we went to dinner with Jason's co-workers and boss, and when Emily let us know that she was done with her day, she and I left dinner.  Em kept her head on my shoulder as we walked back through the casino to our hotel room, and we both breathed a sigh of relief as we walked into our room and left Las Vegas outside of our door.

Jason's co-workers expressed sadness that I left my birthday dinner before my food had even arrived but Jason knows me and said, "Trust me.  She's okay with this."

I put Em in the bathtub ... mostly because I felt like I needed to wash this day off of her ... and as I watched her splash and play in the water I thought about things.

Every person who saw Emily smiled.
You could see the hardness of some people literally soften as they looked at my little girl.
Many people commented on how sweet she was.
The hotel staff wave and smile whenever they see her.

Emily represents the polar opposite of this city.
She's pure and she's innocent.
She's filled with peace - and light - and goodness - and people are drawn to that.

Tonight after Jason came back I ran a hot bubble bath and soaked in the dark as I watched the season premier of Gray's Anatomy on my iPad.

And afterwards, I sat on my bed with Emily asleep next to me, and the lights of the city outside my window, eating my birthday cheesecake.

All I need in my life is inside this hotel room.
The kind of joy and happiness that comes from winning a few dollars in the casino or that comes from the buzz of alcohol?
The happiness that comes from living the high life?
It's not lasting - and it's not real.

I will take my life -  my simple, quiet, clean, wholesome life ... and I will thank God every day for it.



Wednesday, September 25, 2013

The Countdown To Disneyland Has Begun

We've been teaching Emily sign language,
It might not be a version of sign language that the rest of the world understands, but we do: Emily, her daddy and me.
Emily's cousins and aunts and uncles are learning it too...and so are Grandma and Grandpa.

I bought a book today so that I could learn the real words, although the ones I make up are pretty darn clever.  You should see Em...she takes the words I've made up and then makes up her own version on top of that.  It's adorable.

Here's our list so far:

Mickey Mouse
Little Einstein's
all done
thank you
please
help
open
in

People melt when Emily tells them thank you in sign language.

Last night Jason and Emily were playing in our room while I was packing for our trip in Emily's room.
(We're leaving soon for a two week vacation to California.)
Jason was playing the guitar and singing to Emily.

At one point I heard him call into me, "Noelle, what does it mean when Em shakes her hands?"

"It means all done," I called back.

He cracked up and said, "I guess Emily doesn't want me to play the guitar anymore."

And she didn't.  She wanted to watch Mickey Mouse.

That girl...we love her a little bit.

Em's been sick for forever, and my attention has been focused on her more than on writing anything...I'll try to be more involved with this little space that is mine.

Thanks for checking in on us!

Thursday, September 19, 2013

Shh...


Would you like to see a glimpse into a secret corner of my closet?


The binkys have long been chewed through and cut off of the elephants, but I can't part with the elephants.



Monday, September 16, 2013

Freedom


In the form of a backpack.
A little person's backpack that I found online.

Our girl loves it and loves even more that she can go anywhere she wants, even when she's being fed.
And even better?  Jason and I have added three hours to our day because of this backpack.








And here's a picture from the past, just because I love it.
And I love her.


Here's something you might want to know.
For an entire week I asked Jason to find the cord for the camera so that I could download these pictures to my computer.
Every day.
For an entire week.

Saturday night I sat and went through my box of cords (being married to Jason = lots of devices which in turn = lots of cords.)

When he came upstairs I said, "I have good news and I have bad news."

"The good news is I found the cord.  The bad news is that your wife is dumb.  Really dumb."

The cord was there in the plug, charging my camera all along.
I didn't know the cord could be used for both charging and downloading.

Yes...feel free to roll your eyes.
I did.
I'm sure that Jason did.

Tuesday, September 10, 2013

It's Been A Day



I have a customer who owes us a lot of money.
A LOT of money.
He pays on his terms - when he's good and ready - and nothing I say or do will change that.

I've been sending regular texts to him, reminding him that I need a payment.

His response to my last text:

(the white bubble)


In respect to my mom's sensitivity I will refrain from telling you what I said in response.
But it involved a three letter word that starts with the letter A.

And now I will go and indulge in the piece of chocolate cake my mom left on my desk this morning.



Sunday, September 8, 2013

How I Spent My Weekend


BEFORE




AFTER



I need someone to send me a regularly scheduled memo that says simply 
'Emily does not need more toys.'

Wait.
Send it to me after I get what I really want to get her for Christmas.


Thursday, September 5, 2013

A Little Hello



Hi World!

I've been having lots of fun with Mommy while my daddy is off backpacking in the mountains.
He's been gone all week and I really miss him!
Mommy says unless he fell off of a mountain peak he will be home on Sunday.

World, guess what my mommy told me today.

In just a few weeks Mommy and Daddy and Aunt Becca are going to take me to Disneyland!
That's where Mickey and Minnie Mouse live!
I'm so so so excited!

Mommy says that we get to go and stay at a beach house for a week first - in a place called San Diego.
I think I will love that too because we will be right by the ocean and Mommy says the ocean is more water than I have ever seen in my life!
Mommy told me that I will have to wear a life jacket and I told her that as long as it was cute I wouldn't mind.

Water and Disneyland!
I'm one lucky little girl World!

I'm going to go now and climb all over Mommy and throw all of her papers off of her desk - that's my favorite thing to do.

Bye World!