We have made it so far. We can do so much. Life is much easier than it was a year ago. Last week we went to the high risk infant developmental assessment. This involved a long drive in the early morning, and then a series of standardized test to determine how Kate was doing. The entire thing is long, nerve wracking, and frustrating. Holding a one year old in your lap for almost an hour hoping that they will preform tasks put in front of them without speaking to them or encouraging them is challenging. And it is very disappointing when they don't do the task, and you know they can.
I was so happy when she turned one, knowing that we had made it to an important step. At the same time, I remember thinking that she was much closer to her adjusted age in behavior and size. Oh, well we'd get there. Now we've passed the year adjusted mark. We are still growing, and we are doing more things. We are still behind, even according to the experts. Oh, well we will get there someday.
All the same there is a taste in my mouth as I swallow down the "we will catch up someday" statement. It is a a taste of guilt, frustration, sadness and emotion I can't even describe. I sometimes try to tell others about this. Typically I am told that I am over-reacting, or simply they say nothing. Followed by statements like she is doing just fine, she will catch up and don't worry about it. One of Kate's nurses gave me this poem when I was in the NICU. It makes even more sense to me now then it did then. Trying to adjust to Holland can really be hard.
Welcome to Holland
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