Welcome to Holland

Today, my friend Amy, of Through the Eyes of Liam shared a poem on her mommy blog, The Naptime Memos, which was written by a mom of a child with special needs on what it's like to parent a child with a disability.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved. Borrowed from:

http://www.our-kids.org/Archives/Holland.html

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 know that we are very lucky that Makayla's "disability" may never actually disable her.  But this poem still hit my heart hard, and triggered those big weepy tears.  It brought me back to those first few weeks after she was diagnosed with nystagmus, and they told us that she was probably blind.  They sent us home to wait for appointments with specialists, and told us to look for her to track items in her visual field to determine if she could see or not.

I went home that afternoon and laid her on the couch and hovered over her.  I made faces and waved my hands in front of her.  I cried and told her how sorry I was.  My tears litterally fell onto her cheeks as I looked at her. 

While I waited for my husband to get home from work, I cried and convinced myself she couldn't see anything.  I tried to imagine how I could possibly parent a child that would experience the world so differently from me.  I wondered if her vision problems would cause Austin to be neglected.  I wondered how I would treat my little girl the very same as her brother, if she couldn't see or do the things he did.  I worried that she wouldn't be able to share in her father's love of baseball. 

For weeks, all those fears raced through our heads over and over.  We were convinced that she was entirely blind one hour and partially sighted, the next, until we finally had our meeting with Blind Babies in April 2011 when we finally, at four months old, were able to see Makayla track a red pom pom in front of her, and reach out for it.  ...whats the opposite of a heart break?  My heart soared and my eyes filled with tears.  We didn't know how much she could see, but at least she would know my smile.

Like the poem, I still feel like our flight was rerouted, but I can honestly say, that the pain has gotten better.  Sure, a huge part of that is that we now know Makayla sees better than we first expected, but a lot of it has to do with the amount of knowledge I have now, and the amazing connections I have make in the low vision community.  I finally have my Holland guide book, and am finding my way around.  I know what tools I need and how to get them, and I know some amazing locals.  Holland, isn't so bad!