Reality Bites

Well, today was an interesting, yet at the same time a typical day for us.  Started out with an AT (augmentative technology ) evaluation for Anna Cate.  It went really well and now we have lots of thinking, but more "practicing" to do with her.  She currently uses a SpringBoard Lite, but as the name states, "lite", it isn't light enough for her to carry around on her own.  So she is also using the Go To Talk 2 which we recently introduced and is doing really well with it.  This is the device that she carries around school with her and to the playground.  Very "light" and portable!  However, we would like one device to do both things.  So she will also be training on the ipad with the Proloquo2go application.  We feel that the software layout on this program is going to work better for her than the programs she has been using.  She has such amazing finger control and isolation, that I know after a lot of repetition she will get it.  Practicing we will do!

While we were there my little guy was home sick for the third day this week.  He has had a really rough winter.  And thank goodness my mother was in town visiting, because she was able to take him to the doctor for me as it seems he is getting worse, rather than better.  And because the girls had an event at school tonight that I had to get them ready for.  Well, for Eli....they ran all the routine tests (strep, flu, etc) and all were negative so they drew blood and his white count was high.  So after a chest xray to rule our pneumonia, they want to do a repeat blood test tomorrow to see where his levels are. He looks so pitiful and it is so sad to see him without the spunk!

All day we were talking about the event at school and I was getting the girls ready for the 50's party, when the biggest Rett challenge happens, Anna Cate gets upset and goes into a behavior.  The switch was flipped out of no where!  We are supposed to be walking out the door in 20 minutes and I know this will not be happening.  At the same time that I was looking at the clock so does Betsie and she starts to get upset that she is going to miss the whole thing.  After promising her that she will not miss it, I am praying that the behavior ends and does so quickly!  Time is passing and there is no way that Katie is going to be ready to go.  I work a plan out between my parents and Will, that I will take Betsie and then when Anna Cate calms down, Wally will call me and I will meet them at the door with their tickets.  Perfect!  Betsie and I are out the door...only 30 minutes late to the party.  But I must put in here, that after I promised Betsie that she would be going, she stopped asking and waited so patiently for me.  When inside I know she upset and all she wanted was to get there as soon as it started to see her friends.  

On our drive over I thanked her for being understanding and patient and told her I know it is rough growing up in a house with a sister who requires so much attention and time and sometimes mommy and daddy don't like it either.  But this is our life and there is always going to be a little give and take.  As I try to have a heartfelt and deep conversation with her, she promptly reminds that she is six years old by responding, "Mom, the clock says 5:54 and I want to get there at 6:00, we need to move it".  So I stepped on the gas and we arrived in the parking lot at 6:00 on the nose!  In my defense we live very close!

As soon as we walk into the gym, I think to myself, there is no way that Anna Cate would like this.  The music was so loud you had to yell to talk to the person next to you.  I immediately went out into the hall to call Will to let him know, that even when she calms down, I do not think that Anna Cate would enjoy herself due to the level of the noise.  I think that we made the right decision for her.  But I have to be honest, that decision was awful for me.  

I spent a little time alone walking around the silent auction tables and a neighbor came up to me and we started chatting.  I mentioned that Anna Cate was supposed to be there and what happened and found myself getting teary eyed.  It was one of those moments when you wish your daughter was a typical peer and she was there enjoying the night dancing away like her sister. It was one of those moments when you wish you never heard the words Rett syndrome.  It was one of those moments that you realize another childhood memory (school dances) may or may not be a memory for your daughter.  It was one of those moments that just sucks!

After looking at all the items (and bidding on a few!) I walk back into the main room to see that they are having a hula hoop contest.  They are doing the first grade at this moment and when the first grade is finished and they call second grade it is at this time, that I realize I missed the Kindergarten class!  Nice, I just missed Betsie doing the hula hoop contest!  I felt so bad.  And then I felt horrible, when I find out that she won!  But then there was some issue that another person won too so they had to have a hula hoop off to see who the real winner was.  And the other girl won.  All the parents that know me and Betsie came up to me and said that she won the first time and they don't know what happened.  I missed all the drama!  And I love drama!  I ran around trying to find someone I knew in hopes someone took a picture and thankfully I found two!

I want the best for Anna Cate and I want her to be able to experience all the same things her peers are, but I also know there are going to be many things I can not control and I just have to let it go and not beat myself up over it.  So while seeing Betsie hula hooping would have been the pick me up I needed tonight, just seeing her face grinning from ear to ear running around with all her friends in tow was perfect and put the smile back on my face.