What it is like as a parent to a special needs child......

I read this article a few days a go and it has been on my mind non-stop. (I am trying to do this linky stuff again!!)  Here is the article:  Special Needs Parenting

I felt as though she took the words right out of my head.  The first point, I AM TIRED!!  I can't recall a time where I wasn't tired and she was exactly right when she says it is not only the physical part but the emotional and worrying part that takes such a big toll on my energy.  There is very few moments in our day when we are not making it a learning activity or vocabulary lesson.  I recall going to a conference last year on Auditory Verbal Training and the speaker talked about how you can point out an "AV momma" in the grocery store-- she is the one holding up every box saying "momma is getting bananas!  Bananas!  Can you say bananas?  Bananas are YELLOW!  What color are bananas?" This is my shopping trip x's the 899 items I have to get!!
Second point, am I jealous?  That is hard for me right now to answer.  I feel jealous in the since that I have to think about things such as not only saving for my future and retirement but also for the potential that I will have a child that might grow into an adult and doesn't have the ability to have a typical job or that I will have to always have "therapy and special education" funds.  But jealous as far as accomplishments of other children, I am not.  Maybe it is because Cohen is not nearly as involved as the writer's child or as involved as many other special needs children.  I feel almost privileged in the sense that I get to thoroughly enjoy EVERY single milestone because not only do they happen later but they also happen more slowly.  There are a few things that Kinson flew through and with Cohen it might be a month that she takes to completely master a milestone. 
Point number three, do I feel lonely?  Only in those doctor appointments where I am attempting to understand prognosis and explain concerns.  Only then do I feel like I am alone in advocating for her.  I am very blessed to be surrounded by a very supportive and inquisitive family and friends as well as an abundance of fellow parents that I have become close with at Magnolia. 
Fourth point, am I scared?  HELL YES!!!  I think this is in every parent's mind.  Because Lord knows I am terrified that Kinson will be breaking the law before his teenage years based on his behaviors now!!  But I understand very well what she is meaning in this.  I am terrified that I have overlooked something or am wasting times on approaches that might not be successful.  I am terrified that she will bullied her whole life and can't tell me about it.  And again, I am terrified that there might be a point where we be supporting her for her whole life.
Point 5, do certain words bother me?  This has been an issue before I had children.  After my accident, everyone quickly learned that I had a "little arm", I DID NOT have a "stump" or "nub."  Those words make me sick to my stomach and even at work I refer to my patients the same way, the have a "little leg" or "little hand" etc.  I also grew up with my cousin living next door that is "mentally retarded" as it was called.  Even then I didn't take use of those words referred out of context lightly. 
Number 6, I am human.  Yes, I am human.  I agree that I "grew up" quickly as a parent.  Some things that I wish I could just let it go and see what would happen, I can't.  That would mean valuable time is wasted and I can't get it back.  Because of that I feel like I am always moving a million miles per hour.  So then bitterness, crankiness, and frustrations get the better of me.  Those nights where I can steal a few hours with Bear or go out to dinner with friends are cherished times because only during those times do I feel "human."  I can usually push things to the corner and relax the best that I can (if you know me, then you know that I never really relax!!)
Last point, I Love to talk about Cohen/I don't want to talk about Cohen.  Oh my goodness can I relate to this!!  I completely understand the overwhelming feeling that comes when a friend asks "How's Cohen?"  Are you asking just to be nice? do you really want to know? Where do I start?  And then I also appreciate the questions that are directed towards a specific task because I can then narrow down my thoughts into a 1 minute response!  But do I want to talk about her?  YES!  I want to cheer for her and brag on her, and show every cute little video or picture that I can, .......but doesn't every parent?  But we have been in situations where we can't speak of her.  We can't talk about her procedures and appointments because we don't want people to think it interferes with certain aspects of life such as work and friendships and their are times where we don't want it to "label" us.  There is more to us than just being parents.  Bear and I talk about her non-stop or just look at her and smile because we feel so privileged to be her parents.  We are proud of her and we do like to tell people.

Yes, I do feel like I could relate to the writer but I think any parent would.  All parents are scared, all parents are tired at times and feel like they are at their limit, any parent can feel alone at times, and God knows we all like to talk about our kids.  Those are the ups and downs of parenting any we wouldn't change a thing!