Tuesday, February 5, 2013

Daisy Father Daughter Dance

The Daisy Father Daughter dance was Saturday night.  Here are some pics...

Harlie and Daddy

Harlie and Maggie

I LOVE this photo of her!
Gotta get in some puppy lovin'.

I love that she smiles at her reflection in the mirror.
I hope that lasts for a really, really, really long time.

I was so excited.  I found her dress at the Hanna Andersson outlet in Williamsburg for $15!!!  How awesome is that?  And this year - for the first time ever - I didn't have to think or worry about her drooling all over it.  Wow!

Of course I did have to worry about her shoes.  She has the most skinniest feet ever.  So, we get little to no choice of shoes.  No Target shoes for this girl.  Her shoes have to come in super narrow.  Which totally takes all the fun out of shoe shopping.

I really wanted to take her earlier in the week, but it didn't work out.  So, it came down to Friday.  And Saturday we were booked all day - no way I could have done it then.  So, Cheryl came to do her educational session at 2:15.  After that was done and I finally got the kids ready to get in the car, it was later than I wanted to leave.

But, sometimes, I just don't want to do what I'm supposed to do.  I'm tired of having to run around and do crap I don't want to do all the time.  My house was a wreck and I wanted to stay home and get it straight.  It was cold and super windy out and I just didn't want to take Harlie out in that.  But, I had no choice.  It had to be done.

To back up for a sec, the night before, the mom of one of Murphy's friends called and asked if he could go home with her son after school.  Perfect!  Murphy will love that and I only had to worry about Harlie and Cooper for the afternoon.  So, I called Maggie (my niece) and asked her if she could go with us to the mall so she could take Cooper to the play area while I did the shoe thing with Harlie.

As I was getting the kids in the car on Friday, I had some doc phone calls to make and in the process of that, I thought to myself, call Beth about Murphy and tell her I am running late and I can pick him up instead of her bringing him home.  I'll call her from the car I thought.  So, I get them in the car, and I think to myself, who was I supposed to call again?  Hmmm.....  I think and think, and it doesn't come to me.  I guess it wasn't that important - is what I said to myself.  Oh well, moving on...

An hour later, Harlie and I are still at the shoe place (they were busy) and my phone rings.  It was Beth.  THAT'S who I was supposed to call!  Ugh!  Of course, she's at my house with Murphy.  I offered to call a neighbor to see if she could drop him off there, but she said she would just keep him and I could come and get him when I was done.

Lately, it feels like my brain just can't keep up.  I'm still terrible at responding to my emails.  So much for that New Year's resolution.  There are times in the day when I get a moment to think and I have no idea what I'm supposed to be doing.  The to-do list is so long that it really feels impossible, so it's easy to give up and do something else.

Right now my brain is very preoccupied with nursing issues.  It's taking up a LOT of space, time and energy and I'm hating it.  More about that later.  Like when I get it figured out.

Anyway, Harlie and Tom had fun at the dance.  I could tell he wasn't super excited about going.  And I knew it was because he was thinking about how she was going to do, how she was going to act with the other girls, etc.  She just doesn't seem to try to communicate with her peers.  And they try so hard to communicate with her.  They want to hold her hand and lead her to where they want to go, but Harlie won't have it.  I don't know if it's because she's being independent, or if she's afraid they are going to go too fast.  I do think that she's very aware that other kids move around a lot more and faster and she might be afraid that she's going to get knocked over.  Maybe it's a little bit of both.  But, either way it is heartbreaking.

And every time I think that, I feel terrible.  Because I know so many other moms that would give anything to have their children to be able to do what Harlie can do.  It is so weird to live in the place between grief and gratefulness.  Maybe we all feel that to some extent, it just seems so extreme in our case.  So many times I wonder what kind of mom I would have been if I didn't have to do so many extra, unpleasant things.

On a good note, the other day Harlie used her communication device to say "juice."  I said, "What about it?" (tough love, you know).  And she cleared it out and then said, "I want orange juice."  And while I fully expected her to say "I want juice" (which is kinda crazy in itself because she's never asked for juice before) I certainly did NOT expect her to say "orange."  And just that simple, small little word lit up my world for a moment.  She "said" something I didn't expect.  And it was WONDERFUL.

Cooper and Murphy say stuff we don't expect all the time.  It's nice and all.  It's actually very funny.  And we enjoy it, no doubt.  But it was totally different with Harlie.  Ahhh, the extreme highs and lows of raising a special needs child.  How am I not chemically dependent on something?!?

Speaking of saying stuff you don't expect.... so we rented Hotel Transylvania this past weekend.  The kids must have watched it at least 13 times.  In my opinion it was quite funny and cute.  Anyway, there's mention of an uncle in it and Murphy asked me if he had any uncles.  ??????  Where has this kid been?!?!?!  So, I said (annoyed, of course), "Yes Murphy!  Uncle Bruce, Uncle Cabell...."  He interrupted me and said in a very shocked and betrayed sort of way, "Why didn't you tell me you had siblings?!?!?"

Kids.

Okay, that's it for this post.  I'm at school with Harlie right now (no nurse today) and will try to start my next post while here.

Thanks!
~Christy xo

5 comments:

Ann said...

Harlie standing at the mirror with her hand on her hip smiling at herself just kills me! What a hoot and what a testament to her amazing parents and family that let her know that she "rocks it" no matter what.

Love that kid!

xoxo

Kelly said...

First of all, LOVE her hairdo. Super cute! And I totally get the space between grief and gratefulness. I was just thinking that today...and how I don't know HOW to feel and that no one gets it. But you do...and I both love and hate that. Big hugs to you mama. xoxok

Grandma said...

What a beautiful girl, dress, hair and shoes. She looks like a little princess. I am sure she had a great time with daddy and loved being all dressed up...
I hope you get your nursing problems solved..that will take alot of stress off your shoulders. Breathe...take a deep breath and all will work out.

Ann said...

btw - I often ask myself this same thing:

"How am I not chemically dependent on something?!?"

:)

Susan said...

Harlie looks beautiful! I hope she never stops smiling when she's all gussied up and looking in the mirror!!! Ainsley too has super narrow feet. I wonder if it's a low tone thing. Is Harlie out of the SMO's?

Chemical dependency? Yeah, I wonder the same thing, especially when I'm having a bad day I think maybe I need a "mood equilizer". I also can relate to not wanting to do what I have to do.

The grief and gratefulness thing...I think it's always easier to see the reasons for grief than gratefulness. It's human nature. Being grateful doesn't come easily for me. But I try. Mostly because I can't change my circumstances and I want to be okay with what I have.

I love that Harlie is blossoming with her communication device. We are finding the same thing. I think we're on the cusp of a new devepmental stage. And I was thinking that the thing with Harlie not wanting to hold hands while her friends run around. That does seem like it might be scary. Have you asked her? If that's it maybe you could program a button for her that explains that to her friends. Anyway... it's a challenge to figure all this stuff out. Hang in there. XOXO.

Heart Update

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