In the Beginning

Alot of people ask when we realized something was wrong.  This is a loaded question because I had pegnancy problems, which may or may not have been related, as well the labour did not go great.  So I had an uneasy feeling even before she was born.  After having 3 kiddos already, that motherly instinct kicks into overdrive and I think you just know.  After Tegan came into this world....it really started to sink in.  Tegan never cried.  She never cried at birth, and she never cried once during the short 24 stay at the hospital.  Actually we did not hear a peep for the first few weeks...nothing.   I had people telling me she was just a really good baby and that I was going through some sort of post partum paranoia, but I'm sure glad I never gave up on trying to convince any and every doctor I could!  As a mom....you just know something is not right...trust your instinct!

Every little thing Tegan did or didn't do I googled.  Now this can be a horrible thing to do, but I'm the type who wants to figure things out for my kids instead of waiting around for a doctor to tell me I'm right....
OF COURSE I'M RIGHT!!  I am her mother!!!!
I spent any free time researching symptoms....first thing I came across was Cerebral Palsy, then Autism, then Mitochondrial disease, and the list goes on.  I would watch videos of other babies who had already been diagnosed with these things and look for similarities in our baby girl.  I drove myself crazy, but I was determined and wanted to start preparing my family for what was to come.
Tegan would sleep in super awkward positions and arch her back all the time..(as she go older this common back arching would become a horrible, but kinda funny, mocking of something out of the exorcist. After all at some point you need to stop crying and just laugh!)

At her 6 week check up I was given a very vague comment of "you know..you might be on to something" when I asked about Tegan showing signs of Cerebral Palsy.  That was it, the doctor left the room and told us to come back when she was a bit older.  I will never forget that day, but won't go into detail about the emotional wreck I was.
 **My book    There is waaay to much detail about how you feel that I don't feel comfortable sharing with the world online, so I decided a few years back I am going to write a book.  I wish I had a guide book on feelings that you may experience when you are thrown into the world of special needs.  Like a "What to Expect When You are Expecting..and Then Find Out What You Thought You Were Expecting Is In Fact Going to be Completely Different"  .... pretty long of a book title though:)

With that being said I think this is a perfect place to quote this awesome and so true poem.  I painted this poem on a giant canvas and have it hanging in Miss Tegans bedroom...LOVE IT!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI 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.