Welcome to Holland

So this time last week I was just a normal mommy. Now I am a mommy of a disabled child. We have our diagnosis. I don't have much time to go into it but the MRI showed an abnormality in her brain that she was born with. It's called septo-optic-dysplasia or SOD. There's so many different components about it...small optic nerves that means she may not have good vision, or she could be blind - but the ophthalmologist stopped by yesterday and examined her. He said she could see but with a baby this small you just can't tell how much they can see. Another part is that her pituitary gland does not function and send out signals as it should, which is why she had the jaundice, hypothyroidism and wasn't gaining weight. So she will be on medications for the rest of her life. We were already on synthroid for her hypothyroid but now we're on cortisol that will be taken 3 times a day. There's more. A lot more but I don't have the energy, time or the heart to go into it now.

But I will end it with this story I found from another friend who has a disable child. I feel that this explains how I feel to a T. It is heartbreakingly accurate:

WELCOME TO HOLLAND
By Emily Perl Kingsley

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.