Monday, October 11, 2010

Dirty Feet

"Get in line to suck my big toe.... I don't care anymore! Have a nice day"

This was my most recent Facebook status update.  It pretty much with out saying summarizes my morning. The comments I received made me laugh. I love my support system so much!

I finally talked to the principal at my daughters school today and to say it went well would be one of the biggest lies I have ever told.

I am so utterly sick of the school system. I am so sick of miscommunication. I am so sick of politics. I am just sick.

As if raising children wasn't hard enough, try raising one with special needs. Try having your life flipped upside down in the blink of an eye. Try living day by day at the mercy of insurance companies, the government, and red tape. Try being the only voice for another human being who is the most innocent gift God could have ever given you. Try  being told over and over that your voice is not welcome.

I continue to fight. I continue to overcome adversity. I continue to be Makenzie's voice.



Makenzie's voice is one of most consuming things I have ever been responsible for. The problem  for me has become how loud the voice needs to be for anyone to listen. There are so many times I have been shot down while being "nice" only to get loud and somewhat nasty and in the end get what Makenzie needs. Over the course of 3 years it has become apparently clear what the tone of  voice  must be used in order to get anywhere on her behalf. Let me tell you it is not such a pleasant tone.

It is frustrating because it is not who I am but who I have had to become. I pretty much bypass nice and go straight to the tone that gets business done. I do not have the energy to start at the beginning anymore. I have learned that really there is no point.

There are several things about this conversation that really bug me. First is the idea that they think they know what the best is for Makenzie. I would really like to know where they found an easy button because if they know everything there is to know about Makenzie and what is best for her in 8 weeks I have really screwed up somewhere.

Then there is the constant talk of me needing to trust them. That my friends is earned in my world and they have given me no reason to do such a thing. I have given tons of suggestions not one of which I have seen implemented. I have not seen a signed health plan, a draft of an improved plan after the first was denied, or received a call from the nurse on what issue I would like to see addressed differently.

Last but not least is the idea that I need to give them more time. I am not completely sure but 8 weeks sounds like a pretty good amount of time to acquire a pair of adapted scissors, markers, an adaptive holder and some knobby stamps. That is only the simple stuff. So what may I ask would the time frame be on the more complex issues.....

I am so tired of being told that I am paranoid and over protective. I told Makenzie's PT this afternoon to just tell me it is all true so that I can deal with it and move on. However she did not agree. She told me that every time she starts to feel that I am Makenzie does something that proves differently. I felt a bit better.

I would tell those of you who think that I am to walk in my shoes for a day but that wouldn't be enough. A day in my life is not bad. Try 3 years... walk in my shoes for that long and then we can talk. We can talk after 3 years of sleepless nights, ordering medical supplies, researching and trying new meds over and over. We can talk after you watch your child be put under anesthesia time and time again and then holding her while she screams and chokes trying to wake up from those heavy drugs. Try lifting your child who is long and heavy a hundred times a day because she can not move and play by herself. Try making life and death decisions every day. We can talk after you live for the next 3 years with the heavy lingering idea that maybe, just maybe, if you had done something different in that moment, life would be different today and know in the same moment that even that thought is completely irrational. After you do the above that try juggling 3 other children and a house on top of it all. Do that for 3 years non stop.... then lets talk.

Paranoid and over protective?.... maybe.... but I think I have the right.

I have talked with 2 of her doctors tonight. We will get together the most complete health care plan they have ever seen. LOL!! I can too can invoke a little policy and red tape. Then we will wait.......

I just want to be the mom that can say... I love Makenzie's school, she is doing so great and  learning so much!.... Is that really to much to ask? Really?

Sorry for yet another rant. I know there are 2 sides to every story and I am sure I have some idea what the other side to this story would have to say. I am sure it would be just about as pretty as the pictures I have painted but that is ok because I have no red tape, or policy to hide behind. I can use the same annoying words to justify my opinion but the thing is, my opinion is not tied down by ANYTHING other then the NEVER ENDING LOVE I have for my Princess Makenzie. I think that is more then enough to give this "uneducated" mother the right to have some say so in her daughters education. I'm just saying!




So for tonight I am going to love on my kids. Watch some mindless Monday night television, and laugh at the fact I just got an email correcting my spelling of the word "principal" or is it just the "principle" of the matter? Thanks! Glad ya caught that.... not really at the top of my list of things I am going to think about tonight however!

I think I can now change my Facebook status....maybe to something like....

"Thanks for cleaning my feet up..... Moving on! Have a nice night!"

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