Thursday, January 22, 2015


Last week we had an appointment with the specialist PMR doc from the cities.  Monster sees her every four months or so to keep updated on her movements mainly.  The way her muscles work and don't work, etc. 

I asked if Monster would ever walk since lately I've been very discouraged and frustrated that monster isn't progressing quite as much as I'd hoped.  The doc very bluntly said probably not.  She may never walk on her own without assistance, such as a walker or crutches.  Her muscle tone has two vastly opposite ways that it fires which kind of cancel each other out and leave her without much control.  She did suggest pool therapy and also seemed very excited about the idea of hippotherapy (horseback riding) for Monster in the coming months. 

Talk about a major blow.  When you have a baby you don't think about what could be different about your future.  Mainly you think about the status quo high school kid running around on two legs, being "normal" with normal activities. At least, that's what I did when I was thinking about Monster before she was born.  Even still I think about her in high school as a "normal" kid, not as one who's different than the average.  I mean, we don't know that is our future for sure.  We don't know what she'll turn out like.  I wish we did.  I wish we could see what the future holds for Monster in regards to walking, talking, cognition, etc.  but we can't.  And it's sometimes disheartening.

Anyway.  That same day Monster had the state required preschool screening (needs to be done before kindergarten).  Her name came up on the list which was the only reason I scheduled it at age 3.  It was awful.  There was nothing that she could do during the screening.  She can't stand, walk, answer questions, or do activities.  It made me sad.  All the ladies doing the screening looked at me with this "poor you" look, not to mention the other parents in the waiting room while their kids colored or read books and Monster just sat there being monster-y.  I cried the whole way home.  I don't usually get too down about monster's disabilities but that day was too much for me.  I cried and felt sorry for myself and my baby girl.

It's hard.  Her life is going to be hard and I feel so badly that I can't change that.  She's not going to be the average girl in high school giggling about the football players and complaining about how hard that history test was.  She's going to be in special ed class with other not average kids just trying to get through each day and learn something, anything that she can take with her.  It's just hard.


  1. Oh, Caitlin. :( Thanks for sharing your story. Know you and your girl are in my prayers.

  2. :'( i wish i was closer so i could give you hug. i'll see you tomorrow though and hug you then.

  3. Thanks for being willing to share the tough along with the good. I will be thinking of you and your sweet girl.