Thursday, February 24, 2011


Reagan had a really good start today in her preschool class.  As I knew they would be, her teacher, assistants, and therapist(s) were great with her and already showing that they will work her to understand her and make all the changes possible to be accommodating.  Her teacher said that she had a couple of fussy moments but they were easily able to overcome them with music and/or resting.  She also said that Reagan loved watching and interacting with the other children and insisted on laying in a position where she could still see them when she was resting!  Oh, and she also made a friend already.  A little boy that immediately wanted Reagan to sit next to him and then he shared his toys with her...adorable!

I am so, so proud of her for being such a big girl today.  It is a very large change in her life and she took it in stride, showing Mommy that she doesn't need to worry so much!

Wednesday, February 23, 2011

Tomorrow is the big day

Tomorrow is Reagan's big 3rd birthday and also the day that she starts her special needs preschool.  I am so happy for her to be starting school, going to a place to meet other children, some that have disabilities also.  I am also happy that the teacher and team that will be working with her seem like wonderful, caring women.  But I am also VERY anxious and nervous.

I have been looking forward to this day and now I find that I am dreading it.  I am really, really going to miss her.  Yes, it's only 4 hours in the morning, maybe 5 with the traveling.  But it feels like I am letting her go a little, letting her become a big girl, and it makes my heart heavy.  Of course, I really have no control of her growing up but preschool at 3, is that crazy?!?  Everyone I talked to says that she is going to love it and it will be a great separation for both of us.  I know she is going to learn so much at school and enjoy having new friends.  I need to tell the overprotective Mom voice in my head to relax a little, it'll be okay!

Tuesday, February 15, 2011

Reagan's 1st concert

We took Reagan to her first rock children's concert last weekend.  Can you guess who we saw?  Yep, the Imagination Movers, complete with a "backstage" pass to meet them in person and have her picture taken!  I wish I could tell you that she had a great time and was completely in awe of seeing her favorite peeps in person.  But, that's just not the way things work.  I could go through my usual list of excuses for her, like she was having stomach pain, there was too much sensory with the loud music and light show, or that she was tired from the cold she has been fighting for a week.  Or I could just sum it all up with two simple words, Rett Syndrome.

We got there right as the opening act (Cho Cho Soul) started playing.  Reagan looked really excited and was smiling.  They played for about 15 minutes and then there was a set change.  The Movers came on and she looked excited again but started to become visibly upset after about ten minutes.  We were able to keep the breakdown at bay for about another ten minutes before she lost it.  I really don't blame her, it was REALLY loud and bright.  We took her out of the concert and tried everything to calm her down.  Ironically the only thing that worked (and our last resort) was putting on her dvd of...the Imagination Movers.  She is too funny.  After the concert we went to the backstage gathering and the staff were great and understanding.  We explained that she has a disability and that she wasn't feeling well.  They put us in a special spot away from the crowd and we were up close when the Movers came out for their special performance.  Then they got us in the front of the line for pictures.  The Movers were so friendly and genuinely seemed appreciative of their fans.  These are good guys!

With all that being said, I am still *very* happy that we went to the show.  Of course I wish that Reagan's experience would have been more positive but we can only put those opportunities there for our children and make the best of the situation.  I am working hard on making my expectations more realistic and to be happy with the 20 minutes that she did enjoy herself.  Those 20 minutes makes it all worth it!

Reagan enjoying the show

This is towards the end of the final meltdown.  You can see completely misery all over her face (poor baby girl!).  You can also see the DVD playing the Movers for her while the guys are performing on stage in the background.

Private concert afterwards

Thursday, February 3, 2011


I have been avoiding Rett Syndrome. Yep, it's true.  I don't want to think about it, talk about it, cry about it, write about it, or even dream about it's cure.  I began 2011 with one major goal, to be happy despite all my sadness surrounding this disorder.  It literally sucked the life out of me after the diagnosis.  I felt that I was in a dark place last year, especially in the last several months because of the holidays.  I tried really, really hard to be happy but always felt empty inside.  Sure, of course there were moments of happiness here and there but it was always a fleeing moment, nothing that would stick around for my pity party.

Happiness is a state of mind according to Mr. Webster.  Is it possible for my mind to trick my heart?  Can I find happiness again if I block out all things related to Rett Syndrome?  But wait, how is that possible when my daughter's life is so severely impacted by Rett Syndrome?  Yep, it's quite a dilemma.  My approach for the past couple of weeks has been to ignore it all and just focus on the love that I feel for my family.  My heart swells so much when I am cuddling Reagan and she turns to give me a look that says everything that I need to know. Or when I am sitting on the floor with both of my girls and they are giggling at each other over who knows what, probably a secret language that they are sharing.  Or when I am holding Lauren and she squeezes me tight and gives me the best hug ever, complete with patting my back and followed by 5 wet kisses!

It won't be long before I have to get out of my little paradise and join Rettland again.  Reagan's school meeting is in a few weeks and nothing sounds more depressing that sitting in a room of school district personnel to discuss things that your 3 year old daughter can not do thanks to Rett Syndrome.  Or maybe I should convince myself that it's actually a meeting to discuss how smart my daughter is and everything that she will accomplish at school, that would make me happy!

Tuesday, February 1, 2011

Good news to share!

I am having a wonderful day!  Not even the extreme cold weather or rude people at the grocery store could wipe the smile from my face.  This morning I talked to the school district representative and we'll be having a meeting to discuss Reagan's very first IEP (Individualized Education Plan) on Monday, February 14th.  Although this is very exciting news, it is not the REAL reason for my silly grin.  That would be because of the voucher that was sitting my mailbox when I returned home this afternoon.  A voucher for Reagan made payable to a vendor of our choosing for a communication device, paid in full!  Thank you soooo much to the STAP (Specialized Telecommunications Assistance Program) through the state of Texas and the telephone network.  And an even bigger thank you to Ms. L, Reagan's speech therapist, for believing in Reagan and knowing that she is a little girl trapped in her body, waiting to tell us all what she is thinking.  My baby is going to have her voice one day VERY soon!!!  The next step is to submit our purchase order to the company we choose and patiently wait for her "talker" to arrive, possibly 4 to 6 months.  No problem, I can wait that long!

Yep, today was a good day.  I hope you all are staying warm and safe in this "arctic" blast!