Heartache

[missyt219]

Here I sit writing this post just to calm myself and maybe give me piece of mind by letting it all out.  I apologize up front if it becomes too long, goes off on tangents or well "whatever!"  Spent yet another day waking up with false hope that there is the slightest bit of improvement, that my Melanie has at least come back to us to the point we were at before everything went to pot yet again.  My husband tells me how this is not fair, asks why does God keep doing this to us?, we try so hard and for what.  Today I told him that I just didn't f***ing care anymore and to never mention God in front of me again.  It is hard enough for us to work with, deal with, and help our special needs child without having a monkey wrench thrown in to set everything back just when we are starting to make some headway.  I'm tired of going through the day on egg shells, wondering when the phone rings during the school day if it is something wrong, stressing about how she is going to be after school.  Is today going to be semi ok or are all of our nerves going to be set on edge again?

I just don't understand, I don't want to have to hide so that I can ball my eyes out and release all my pent up anger.  It is such bulls*** that we can't get answers to why our baby is this way.  Nobody knows what is going on, why it is going on or how to help this poor innocent child and others like her.  How are we supposed to help when nobody knows!

My daughter was finally making progress.  She was starting to verbalize a few words, her behavior was improving, she started buttoning her own clothes, she was finally out of pullups using the potty like a big girl with only minimal issues pertaining to BM, she was eating good, very loveable.  Over the last couple weeks it seems that she has lost so much.  She will not use the bathroom at all, she just stands and pees through her clothes, no BM.  Taking her bath was one of her favorite things, I mean I had to set aside an hour for her bath because she loved it that much and now I can't even get her in the tub.  We've gone from verbalization to babbling or no words at all.  My little girl won't do anything on her own, everything must be done with prompting and hand over hand assistance.  She does not want to be touched and her behavior has gotten worse and worse by the day.  What the hell is going on, how can she regress this bad and why?

I have tried to nail down where things went wrong, why this is happening but just keep hitting a brick wall.  I am in constant communication with her teacher, speech and class assistants - nobody can figure out what is going on.  There is no answer to what we should do and I feel so damn helpless and clueless.  I have tried her behavior clinician, service coordinator blah blah blah and nothing.  What am I supposed to do?  How are we to help her?  No friggin' answers, nothing, nothing, nothing.

Tomorrow is another day, who knows what we have to look forward to or not.  It will be a fresh start, more trials to get through to her.  We just cannot give up!  Would be nice to have more strength, understanding and help.  Would be nice for a change if we could just figure out even one aspect of this chaos and have some peace and normality.  My daughter is beautiful, smart, tenacoius, loving and strong - she deserves the world!  We will go to our grave fighting for her!