Always Smiling

My Emily has not had the easiest time in the first 8 years of her life. There has been countless appointments, blood work, MRI's, EEG's, and therapies but I can never remember her ever complain. It is usually just the opposite, she is always smiling.

The latest was her 72 hour EEG. I have never had an EEG but it doesn't look comfortable. I know it was hard for her to sleep, and the electrodes rubbed some skin off of her forehead. The worst thing she said all weekend was how it would be cool if the EEG fell off when she was sleeping. If it would of been me, I would of been complaining the whole time. Nope, not Emily.

My brave little girl who has gone through more tests then a lot of adults. I always try to be strong during her appointments and tests. There are tears that flow sometimes, but they are always mine.

I'm sure that other parents with kids that have disabilities or chronic health problems see the same thing. So many tests & appointments, all with a smile on their face.

My Beuatiful Baby Girl!! I'm So Lucky!

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Friendship

The medical conditions Emily has/had/will have are very hard to think about.  There is always the what if's that I constantly think about and so many unknowns (see bunch of numbers entry).  The constant Dr.'s appointments and fear of the unknown will never compare to the heartache I feel about Emily having friends.  No one can truly understand until they hear their 8 year old say, "I wish I had a friend" or "Why do people think I'm stupid".

I want tell her to not listen to them and ignore them.  Emily for some reason wants so bad to for these mean kids to be her friend.  She goes out of her way to bring extra snacks to give to these children.  I want to tell her to protect herself and be mean right back to them.  I want her to bully them right back and maybe push them down (I know, not a good idea but it would make me feel better).  My reaction and Emily's reaction just goes to show what a better person she is then those mean kids and even me and she is only 8.

Emily & her Chromosome 18 Friend Julia

A FRIEND LIKE ME 

Please don't be afraid of me

I want to be your friend. 

And if you get to know me
Your rigid thoughts might bend

Thoughts that I am different
From others that you know,
I really am no different
And this I'd like to show

I live and breathe and laugh and cry
I love to play and learn,
I sometimes do things differently
Which can cause some concern

You see, some say I'm special
I guess this much is true,
But if you were to ask me
I'd say you're special too

We're all a little different
No two are just the same,
It's really something wonderful
that way there is no blame

When things don't go just perfectly
And others get confused,
And say things like "poor child"
and other terms they use

It's okay if you look at me
And might not understand,
It's okay if you touch me
And even hold my hand

My life has many obstacles
Much more than you could know,
But that's not what I dwell on
I'm me, that's all, and so...

Please don't be afraid of me
I want you just to see,
How truly great and wonderful
A friend like me can be

A Bunch of Numbers

Emily has 18p- Syndrome and she is missing the top part of the p tip of Chromosome 18 (18p11.32 to be exact).