I came across this piece that was posted by a brilliant mother on her blog. The piece, entitled "Welcome to Holland", was written by Emily Perl Kingsley. Ms. Kingsley is a writer for "Sesame Street" and has a son with Down Syndrome. She wrote the piece to help people imagine what it would feel like to raise a child with a disability. It was Ms. Kingsley who encouraged Sesame Street to include children with disabilities on the show. She has written over 20 children's books and won numerous daytime emmys through her writings for Sesame Street.
WELCOME TO HOLLAND c1987 by Emily Perl Kingsley. All rights reserved.
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 Colosseum. 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.
That piece reminded me of the raw emotions I felt upon learning Ava's diagnosis. I felt like everything was on standstill - time just stopped. Then the grief and constant crying for two or so weeks. And then, I educated myself. Like a sponge I soaked up any and all information I could get my hands on. Talk to and meet other parents, join support groups, talk to professionals, surf the web, borrow books and videos from the library, take sign language classes -. And then, the grief stops - you smack yourself in the back of the head and say ENOUGH its time to move forward. You have a beautiful, healthy baby who cannot hear. What are you going to do about it? Just like in the beautifully written piece by Ms. Kingsley, you catch your breath and notice all the beautiful things that Holland has to offer and you realize you would never trade Holland for Italy, ever....
Ava's surgery is only 10 days away! We have one more appointment left with audiology on March 27th. At the last couple appointments the audiologist was unable to do part of the testing due to fluid in Ava's ears from a cold she had a while ago. I hope it is all cleared up - I'm not sure if that will affect things if she still has fluid in her ears as far as the surgery date. We also have an appointment with the surgeon that day. Hopefully I will find out the time of the surgery and pre-op instructions at that appointment.