Monday, June 24, 2013

The Sound of Silence

My world goes mostly silent when Jason's gone and it seems that silence permeates through everything.
I blog less, I text less, I email less, I post less on Facebook, I talk less to people...
I grow accustomed to the silence, and find a sense of peace in it.
Even at work, Em and I spend our time in my office and except for an occasional visit from Aunt Becca, and a daily visit from Uncle Travis, Em and I are alone in our world.

(Travis is my cousin but he loves Em enough to play along when Em wants to point to numbers...and Em is comfortable with him.  That earns him uncle status.)

My sweet Emily - oh how I love her.

On Sunday Em saw numbers written on the chalkboard - they were the page numbers for the hymns we were going to sing.
I let Em off of my lap and she made her way to the front of the room where she stood and pointed to the numbers.
She looked around at the women sitting closest to her, and looked at the woman who was at the front of the room giving some announcements, and pointed again at the numbers.
When they didn't respond she looked for me.
I was sitting in the very back of the room and it took her a minute to find me, but when she did she smiled and pointed to her numbers.
I nodded my head and smiled back.
That was enough for Em - she ran back to where I was and climbed in my lap with a big smile on her face.

Everyone asks the same question about Emily.
"When will she talk?"
My answer is simply, "I don't know." 
And in my mind I replay the conversations that Emily and I have all day long - without her ever uttering a single word.

This afternoon I couldn't get her to settle down for her nap.
She was distracted by something and kept pointing to two different areas in my office.
I finally let her down and said, "Show me what you want."
She walked over to her Mickey Mouse toy and picked it up and hugged it and gave it a kiss, and then put it down.
And then she walked to my desk and pointed to my water bottle.
"Do you want a drink?
Em smiled and made her little noise for yes and then let me give her four or five small sips of water.
Within five minutes of doing those two things, Emily was sleeping peacefully.

Because of Emily, I've learned that there is beauty in silence.

When my sweet girl was less than a week old we were told of her chromosome deletion.
We met with a geneticist who sat with us in the CICU and told us of what we could expect for Emily's future - if she survived long enough to have a future.

I mourned the life I wanted for Emily.
I cried tears of pain and grief and fear and anger and bitterness.
I still cry those tears - not every day, and not even very often - but they are there and they surface from time to time.

But something I read recently gave me pause - caused me to examine the relationship I have with Em's missing chromosome.

My heart broke the first time they cut into my sweet girl to operate on her tiny tiny heart - and it's a break that will never heal completely in this life.
But it's Emily's broken heart and missing chromosome that make her who she is.

Without Tetralogy of Fallot - without DiGeorge Syndrome - without the scars - without the feeding tube - without the silence - Emily wouldn't be Emily, and I would never want to know a world without this little girl - without this Emily.

Tonight Em rolled over in her almost asleep state and wrapped her little hand around my fingers and squeezed.
She snuggled against my shoulder and with her hand still in mine she fell asleep.

In the pain and sorrow there is ALWAYS peace and there is always joy - and in the silence there are conversations that my heart will never forget.








Wednesday, June 19, 2013

It's Been A While

"If there are five things that can make a root canal difficult and challenging, you have six."
That's what the dentist told me this morning after I had spent two hours with my mouth held open as wide as it could go.
Now that the numbing medicine is fading, I'm feeling a bit picked on.
I have to go back in a week so that the dentist can finish what he started, and work on a second tooth.
Woe is me.

Other than that, life just plugs along.

Jason is out of town for nearly two weeks this time, and Em and I are doing our best to stay entertained.
We go to work, we go for bike rides, we snuggle on the couch, and we spend a lot of time looking at numbers.
License plates are Em's favorites - unless we walk to the mailbox, and then you would think Em had won the lottery for as excited as she gets to see so many numbers in one place!

We spent the weekend at a family reunion and Em experienced her first exposure to camp fire.
I could not keep her away from the fire pit - every time she escaped she went straight for it.
Jason's mom helped her roast a marshmallow, until Em threw the roasting stick into the fire.


My husband has a camping gear collection that could rival anyone, anywhere, and he was so excited for Em's first camping trip, but he sacrificed all of that and got us a hotel room.
I've been sick for what seems like forever, and Jason didn't want to make that worse.
I was so grateful.
We had the experience of being in the mountains, and letting Em play to her heart's content with dirt and her cousins (it was a toss up which one she preferred) and then I got to shower, sleep in a warm place, and wake rested.

I'm struggling to keep my eyes open thanks to some pain medication the dentist gave me - I'm going to go and attempt a nap.
I can guarantee that the minute I close my eyes Em will come over and pounce on me.
I love her.
I don't love root canals.


Tuesday, June 11, 2013

Heat and Allergies - My Favorite Combination

There are moments where I wonder what on earth happened to my common sense.
Heat + long hair = a rash on the back of my neck.
I had only been working outside for half an hour when I felt the rash on my neck.
I went inside and asked Becca for an elastic for my hair and some sunscreen.

After my hair was pulled up Becca was on sunscreen duty.
The minute she sprayed sunscreen on the back of my neck I screamed and jumped up and down.
It hurt - a lot.
My mom stood by watching the entire scene and said, "Why would you put sunscreen on a rash?"

(At this point Becca was blowing on my neck to stop the sting - she's a good sister like that.)

Why would you put sunscreen on a rash?
A normal and sane person probably wouldn't.
More sleep would probably solve all problems.

* * *

Would you like to see a picture that made it into my top five favorites?



Em's grandmas and I made the quilt for her.
You can't see it well, but the top is quilted with hearts.
She's in love with it and I'm in love with her.
That's a lot of love.

And look, Em's first drawing:

(There's a good chance I'm going to frame it - does that make me weird?)


I have to go back outside now... to the land of heat rashes.
I hope that for your sake you're reading this while your feet are dangling in a cool stream of water.



Friday, June 7, 2013

Since We Last Met

Jason wrecked his road bike.


That was with his helmet.
He's really sore today, but thankfully he didn't have a concussion.

Em became a monkey.



We rearranged our living room so that she couldn't climb the furniture and swing the pictures on the walls back and forth.  She can still climb the furniture, she just doesn't have access to my paintings.

I stayed up late last night custom designing a pair of Chacos.



I even got to pick the color of the stitching!
I haven't shipped them or anything, they're just sitting in my cart at the Chaco website.
I have a year before my discount code expires (Jason knows a guy) so one of these days...

Oh...
Here's something I have failed to mention.
Emily drinks little sips of water.
She loves to take sips of the water when she's taking a bath (before it's soapy) and she'll take tiny sips from my water bottle.
The other night she tasted Jason's ice cream bar, and tonight she willingly licked a crouton and then some ranch dressing off a slice of a cucumber.
The phrase baby steps was invented for situations like this - it gives Jason and I great hope that maybe one day we'll get to take the feeding tube out of our girl's tummy!

BUT ...
The biggest thing that has happened since we last met?
Emily became a genius overnight.
Seriously.

Perhaps this is typical of an almost two year old, but for someone who is supposed to have big time learning disabilities, she's on track for showing the world what's really up with her chromosome deletion.

(If you're reading this in your reader, this is the part where you might have to click over to my blog so that you can watch this video of Em.  It really is amazing.)



After she got tired of this toy last night I got out a piece of paper and wrote the numbers 1-5 in a random order.  (Thinking that she might have the toy memorized or something.)

She knows her numbers.
And she carries that paper everywhere she goes.
I wrote numbers on both sides of the page and tonight when I asked her where the number three was she pointed to three and then turned the page over and pointed to the other three.
She knows when she's right because she'll point and give us the biggest smile.

Every time she saw a number today she got excited.
License plates, price tags at a shoe store, clocks...
It's overnight I'm telling you!

She knows higher numbers too - up to nine.  I haven't tested her higher than that.
We'll ask her to point to a certain number and she'll study the numbers and then point.
She's almost always right.

I can't decide if she's going to be an accountant - maybe play around with the stock market - or be the next Rain Man.

Regardless, I'm incredibly proud of my little lady.
Every single day she amazes me.

And on top of it all, she's cute.


Tuesday, June 4, 2013

And no, I don't make my bed every day. Don't judge.

All the best things we have come our way because Jason 'knows a guy.'
And by things I mean things.
Things that in the big picture of life don't mean that much, but that make life a little better.

On Thursday Jason and I are taking the day off together - we haven't done that in at least a million days.
We are going to make the journey to the northern town where we both went to college - but not at the same time, because that would have been too easy - and after I convince Jason that we need to eat lunch at my favorite lunching spot, we're going to get this...for me.



I haven't been this excited since ...
I'm thinking about when the last time was that I was this excited.
I'll get back to you on that.
Oh the places Em and I can go with my bike and her little bike trailer.

Hold on - have you seen her bike trailer?


When it's not serving as a trailer it's a stroller and we love it!

(Especially because where we live is Grand Central Station for mosquitoes and when we're out for our nightly walk we can put the screen down and know that Em is mosquito bite free.)

The guy Jason knows is going to trade the bike for camping gear that Jason sells - and when all is said and done, we will have gotten an amazing deal.

Do you know how long it's been since I've had a bike of my very own?
Well, the last time I bought a bike was when I lived in Brooklyn - have you ever ridden a bike in Brooklyn?
It's not the sanest thing you'll ever do - but that's a story for another time.
But before Brooklyn - which was in 1996 I think - I can't remember when I had a bike of my very own.

Hooray for new bikes!

* * * * *

Jason has been watching Em this week...because after this week he will be gone forever.
This afternoon I got this text:


Here's a better picture:


She loves playing with the monitor...and my iPad...and her binky.

I suggested to Jason that perhaps this was Em's way of subtly telling her daddy that she wanted a bath and to finally get out of her pajamas.

We have our good days and our bad, but overall we're a happy little family and my family is really the best thing about my life.



Sunday, June 2, 2013

A Date With Daddy


While I spent the day working on Saturday, Jason took Em on her first hike.
Someone Jason works with very generously gave him a backpack that is perfect for our little miss.
Emily loved being with her daddy and Jason can't wait for their next hike.







(yes, she's standing in the stream...her feet were ice cold...silly girl)





Here's one more - this girl loves playing outside.