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.

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.

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.

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.

Yes It's True, I Blogged

Emily and Becca and I went to dinner tonight.
After tonight Em won't be invited again for a long time - the terrible two's are out in full form.
As the hostess was seating us she asked, "Should I get some crayons for your little girl or will she eat them?"
"She won't eat them but you don't need to give her any.  She'll just throw them on the floor."

Whenever I go to the bank the teller asks me if Emily wants a sucker and I smile and shake my head no.

It's really easy for me to accept and maybe even respect Emily's limitations when it comes to eating.
She doesn't put food in her mouth, and right now I don't expect her to.

With that said, help me understand something - give me some insight on my next scenario.

I've noticed recently that when someone says hello to Emily, no matter who it is or where we are my automatic response is to look at Emily and say, "Can you say hi?"

And by doing that I give the person who said hello the expectation of a response, when I know full well that Emily won't respond.

Tonight I did it again.  Someone said hello and I looked at Em and asked "can you say hi?"
And then I kind of wanted to smack myself.
In a way I feel like I'm setting my girl up to fail by asking her that question.
No.  She can't say hi.
No. She won't say hi.
And in most cases, unless you're Aunt Becca or Grandpa and Grandma, she won't even wave  to you.

She's not even two - she doesn't know that I'm setting her up to fail -  but it's going to happen that someone will not get the response they want and think to themselves, "she's not a very friendly little girl."

When the truth is the exact opposite.

Em will have limitations: the quantity and severity of those limitations won't be known until she gets older.
I will do everything I can to help lessen the limitations and to focus on the amazing things Emily does so well.
But it should start now - with the next person who says hello to my sweet little lady.

What do I say then?
Just smile and say nothing?
Speak for Em and say hi to the person?

Am I over thinking this entire thing?

* * * * *

Our girl is full of happiness and joy and love for the world around her - she points now, to everything.
Tonight it was a stack of tires at Costco.
Over and over again she pointed to the tires, waiting until I said the word tire before she raised her finger and pointed again.

She loves the Little Einsteins and Minnie Mouse.
I can't wait to show you the quilt I've made Em - with loving help from both grandmas.
I dropped it off tonight at a quilt shop where someone is going to quilt hearts on the top for me.
We went for a walk along the river Monday night, before Daddy left to go out of town for the week, and all I had to cover Emily up with was the quilt top.
The minute she saw it she snuggled up to it and kept her hand firmly wrapped around a piece of the quilt for the hour we were walking.

My life is full of busyness and stress, but when Em comes and wants to snuggle, all of the other disappears for a few minutes and I remind myself of all that I'm blessed with...

...even if I have to go to desperate measures to entertain her.

(This?  The best $40.00 I've ever spent.  My girl LOVES this thing, and spent all afternoon playing contentedly inside.)

It's A Good Thing I Have My Daddy!

Hi World,

While Mommy works her life away I just hang out

Mommy says maybe next week she'll have time to write a real blog.

I hope you all have a good weekend! 

Love, Emily 

What Jason Sent Me

My poor husband...

He was probably worried about a matching outfit because I harassed him not too long ago about Em's clothes not matching.

He's a good daddy and Emily is a lucky girl.

Emily's cardiology appointment went well - incredibly well.

They don't need to see us back for at least 9 months, and then it will be to have an MRI of her heart.

Our girl has an intense fear of all things medically related and the sedation process was hard on her.

When Em was coming out of the sedation she panicked again and the only way I could settle her down was to pick her up and snuggle with her on the hospital bed.

Em's doctor wheeled both Em and her mommy through the hospital back to the recovery room, and everyone who saw us said, "aww."

Yesterday I tried to lay her on a changing table at church to change her diaper and she panicked - clung to me and would not let me change her diaper until I put her on the floor.

My sweet girl has been through far too much in her life.

* * *

Let's keep a prayer in our hearts for all of those affected by the terrible storms.