Tuesday, June 2, 2015

Do you really have any idea?

As I sit down to write this, I am coming from doing an over night EEG testing for my youngest son, so if my word are harsh or a bit brash, its because there was very little sleep to be had by either one of us.

A few days ago, I had some comments put on a couple of my posts that were very suggesting in nature that I, and like many other special need parents out there were doing it wrong. That we are parenting our children to make them be victims of society. That how could we, despite our best efforts to help our children grow and prosper. Now I normally don't pay much heed to the ramblings of trolls. By the grace of gods, I don't get that many, but when I do, they are of the epic persuasions. Maybe due to my worries about this up coming testing of my youngest ( thanks in part to the evidence of seizures), my mind started to go to that dark and very unhappy spot where I start to question, if I am truly a horrible parent. I know the answer is no, but a sleep depraved and worrisome mind can play those kind of tricks.

As I sat and watched the EEG tech put electrodes on my sleeping son's head, hoping to hell he won't wake up, my thoughts drift back to the comments made

"Its devastating that people like you are parents to those who are special needs. Clearly you don't love your children enough, as you are trying to hold them back"

People like me? Oh, you mean those people who would do anything just to make sure their children felt loved and supported. Those type of people who would not let anything get in their way, as they tried to provide for their children. Those people? The ones who have slept on shitty hospital chairs, just so when their children awaken from testing or a procedure, they saw a loving face? Or are the people you are talking about the ones who will battle insurance companies, shitty school systems or anyone else who stands in the way of their child's growth and development. If those are the type of people you are generalizing, then yes I, truly am one of those people.

They don't sit in the doctor's offices with me, nor do they sit in the IEP meetings with me either. They do not call the insurance company on my behalf in regards to testing that should be covered, but for some reason the Insurance is dragging their butts on authorizing it. These people who troll the blogs and the pages don't have one stinking clue, because if they did, just have one, they would not beat down a parent for doing what they think is best for their child(ren).

Its one thing to point out if a parent is abusive or harmful to their children, but for the most part everyone who loves their children and wants to see them live a life to it's fullest, are willing to go to the ends of the earth. If there is something that you tried and it failed, it doesn't mean it won't work for another.

When I write, I give just an inkling of what it is truly like in my house. Just as you all can't come and live with me to see my day to day, I can't do the same with all of you. I write because I feel that people need to know, that they are not alone. That if some of my stories are ones that people can relate to. I get that I am not everyone's cup of tea, to which I am not trying to be.

So many of us have our different stories. The diagnoses, the testings, the results and the battles we all face. Each and everyone of us has been there.

I drift back to Sunday night, when at precisely 2:30 am, half way through his EEG, he sits up and pulls half of the electrodes off his head. My thought was, he is 5 and doesn't understand why this test is important. As I start to sing him back to sleep, the tech comes in to try and figure out what do next, as we have only collected 4 hours of data out of a 10-12 hour study. I carefully cradle my son, in the hopes to get him back to slumber, I remind myself, a parent who doesn't love their child enough wouldn't be sitting here doing this.

 And for that, I ask those haters and nay sayers,

" Do you really have any idea?"

My answer to you is, No, you really don't. You don't live my life nor do I yours.