Friday, March 16, 2012

If Only. . . .

Today is one of those really hard days when I feel like Rett just slapped me across the face.  It was nothing huge that happened.  I guess some days you can deal with it and others it just catches you off guard.  So we got up a little later than usual.  Start with breakfast and meds. I ask her what she wants and I get no answer.  Today she's decided that she will not answer my questions.  So I threaten, "Ok, if you don't tell me, then I will choose for you!"  Ooooh, that's a threat.  Who cares, if I choose for her, who cares?  It will still be something good, something that she likes, so what's the punishment?  So we force down breakfast, and I don't know why she's not eating like she normally does.  And then that bothers me.  I am so tired of guessing!  Maybe she's worn out from being at the zoo yesterday, maybe she has a head ache, maybe she has bad allergies, maybe, maybe, maybe.  Just tired of it!  Then Liv starts in. Poor girl, all she wants is someone to play with her.  I can't tell you how it breaks my heart into a million pieces as she stands in front of Juliana with her yes/no buttons, begging her to play with her.  Well today Olivia had cotton candy from the zoo and all she wanted was for Juliana to go in the playroom with her and eat the damn cotton candy.  So she is literally standing in front of her with the buttons again BEGGING her to eat some and she doesn't respond.  I go into the playroom later to find her crying because she really wanted her sister to eat cotton candy with her.  Such a small request.  And that takes me to whole other ugly place.  The place where I imagine all the things they would do, the adventures they would have, the giggling they would do, and even the bickering they would do, if only Rett was not a part of our life.  I know, I'm just having a boo hoo kind of a day.  I will get over it and move forward because that's what we have to do.  In fact, today we will face another hurdle.  Today we have an appointment with Texas Scottish Rite Hospital to address her scoliosis.  I have no idea what to expect.  Prayers please for what I hope will be a great appointment!


  1. Hope that it was a great appointment! Also hope that today is a better day. Big hugs to both you and Olivia-both of your girls are really remarkable.

  2. I stumbled across your blog and just wanted to say hi. My daughter has Rett syndrome so I feel your pain. Some days it's just hard to be positive. If you ever need someone to talk to, please feel free to contact me! hugs!