Friday, February 21, 2014

The Reality Is....

Somedays I feel like Superwoman....others....not so much
Somedays I hate PKS....other days....I am thankful for it
Somedays I feel overwhelmed by the love around me, but yet still alone
Somedays I feel so positive....other days...I want to go to bed and watch chick flicks and eat chocolate until I puke.

I truly think that these things are related to me and not the fact that I have a child with a disability.  I would like to think that these things just make me human.

I definitely realize that everyone has "their shit"  I do not think just because Patrick was born this way, makes it define us. Or that our "shit" is more important...just different.   I would hope that I don't judge people for their own worries, which are different than mine.  I think we all know what we know.  Its hard for people to really think about how someone else is feeling, unless you've been there. 

 At the end of the day....most of "the shit" our family has to deal with, has nothing to do with Patrick himself....

Its the worry,
the unkown,
the how am I going to pay the deductibles for this,
the, who the hell do I have to talk to about making this stupid decision for "the best interest of my child" or "that it isnt medically necessary"
the need to go back to work, but don't know how I will get him to all of his appointments,
the wonder if we will ever be able to get him the type of house he will need
the wonder of how the hell am I going to lift him when he is 10, 15, 20 years old
the wonder of, "will he ever walk?" In the same breath, thinking I am totally fine if he doesn't but yet wanting him to at the same time.
how do I handle people staring, laughing or making fun of him
what goals do we put in his IEP
how I hope Patrick teaches Avery and Jameson(and everyone for that matter) to be more caring people
where will Tim, and I and Bubby travel when we retire

Again, at the end of the day... this stuff has nothing to do with Patrick himself.  My happy, sweet boy.  I can sit on the couch or cuddle in bed with him and all of this goes away.  Or as I type this, I can't help but get caught up in his contagious, huge smile, sitting right next to me. 

I don't know if I have a point to this, other than I hope that people can relate to it, with me, with "their shit" and not feel sorry for people with a child with a disability.  Don't pity...just learn.  Don't feel sorry for us...just support us.  Don't just stare...come over and smile and talk to Patrick or someone like him.  I realize we are different, that is why we get the stares...so ask questions.  Be friendly.

The reality is, we don't feel sorry for us.  I don't, Tim doesn't, Avery doesn't and I hope Jameson won't-he won't know any different.  Do we have bad days??  YES!!  We are human.  But even those bad days, I don't feel sorry for any of us, because of PKS.  I get frustrated with the decisions and things that come along with it, just like anyone else....its just that, our decisions and things, are different than most.  And I can't expect people to completely get it, unless you've been there.  Just like I may not completely understand what other people are going through.  I can just try and support the best way I know how.

We all have peaks and valleys...
I love Bubby :)