Thursday, August 16, 2007

Different isn't bad, it's just different

Alaina is doing so well. She is growing so fast and she is sleeping through the night now. She has started to hold her head up better and has now started to roll over to one side. That is why I haven't been able to figure out why I am having such a hard time the last week or so. I seem to be in the "baby blues" rut a little longer this time I guess. I think that maybe I am feeling sorry for myself and for Mikaily. "Why?" you ask. I just have a hard time not feeling like Mikaily (and the rest of her family to a certain extent) has been jipped. She was so fragile when she was born and although she is doing amazingly well now, we have had to work so hard to get her here. We have been through more than 2 dozen doctors, 15 therapists, walkers, leg braces, breathing machines, hearing tests, vision screenings, feeding tubes, hand splints, trips to the ER (too numerous to count), blood tests, IEPs and AIPs, botox injections, and so many other things that a child should never have to be put through. I think that, since Laney is doing so well, it just reminds me of what a tough life Mikaily has had and what a long road we still have in front of us. So, whenever I start feeling sorry for myself I like to read this article called 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.

I am sure some of you have read it before. I think it can be applied to many aspects of a persons life, but it hits the nail on the head when it comes to having a child with special needs. I hope that I can teach my daughter to understand that I love her MORE because she took me to Holland.

Different isn't bad, it's just different.


shannon said...

that was awesome! and that author couldn't be more right...not really knowing first hand, I can't understand, but it makes sense. i am just amazed how awesome of a mom you are though!