A new World

I have been debating for days about writing in this blog.  There are many things going on in our house these days and quite frankly it's been overwhelming.  The reason I've debated is because I wasn't sure how much of "me" I wanted to put out there.

I'm on facebook a lot.  I put posts up frequently, add tons of pictures and comment on lots of pages.  But I really keep it light, keep it airy and keep it "surfacey."  Oh sure I may get hot under the collar now and again, I may go off on something that really is bugging me.  But for the most part, I don't air dirty laundry and I don't share much of me.

When Nea was diagnosed as having Autism, the first place I went to was the internet.  Of course there are great web sites like Autism Speaks , and Autism Society of America-Central IL Chapter but what I really wanted was to read a blog.  I wanted to read the point of view from a parent.  I wanted to hear what a Mom had to say when she realized her child was faced with struggles, and some she never dreamed about.  I wanted to know what these parents did, how these children thrived, how to be an advocate for my own child.  The websites were full of great information, but I wanted the story.  For it's in the story that I gain a deeper understanding.

And so, I have finally decided to share our story.  It will serve 3 purposes for us.

1)  Writing is cathartic for me, and it's a nice way for me to de-stress.
2)  Keeping some sort of "diary" that Nea can read when she gets older, may be a wonderful thing for her.  I've long stopped writing in her baby book!
3)  There may be another Mom out there....looking to find a story.

So yes, I will share.  And yes, it may be raw.  And yes, I will be frustrated.   And yes, I will have tears.  But this is my journey as a parent, and my child deserves the very best of me.  All of me.  You, dear reader, will get the same.

So, our world changed.  It looks very different now.  I would like to tell you that I accepted it all with grace and poise, but in reality, I was sad on the inside.  I was just sad that I couldn't change it, I couldn't protect her from it, and there was nothing I could have done to stop it.  I suppose it's one of many lessons for me when it comes to the "not in your control" aisle.

I've worked with special needs kids a lot.  One of the most profound things I've ever read was the story I am posting below.  When I read it again, now, with different eyes and different experiences I was more than blown away.

 "I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
~~ Emily Perl Kingsley 1987

I wept.  I wept for a lot of reasons.  Part of it was guilt.  Okay, a large part of it was guilt.  But I had to come to terms with the fact that I was pissed off.  I'm not going to lie, I was ready to make a banner that read

HOLLAND SUCKS!!

I had already had some of these feelings when dealing with infertility for so damn long.  But that poem gave me the opportunity to be honest with myself and to really take a step back.  And then the switch clicked.

It's not about me.  It's about her.  It's about my responsibility to her and helping her make her way in this world.  It's about making sure that I speak for her until she's ready to speak on her own.  It's about making sure that we celebrate every single step of this journey we are on.

And with that....I was ready to move forward.