I wanted to share a poem that I found probably 9 months ago, I have always kept it close to heart, but wanted to share it with those of you I haven't. Today I have not been able to shake Audrey's speech therapy session from yesterday. The therapist is concerned that she may have verbal apraxia. The whole idea is much more scary to me then medical GI issues that I can help with a pill or food that I can pretend doesn't exist for her. I suppose truely they all make our lives a little more complicated, but this scares me a bit more.. It's her brain..it's the wiring..that's scary. Quite possibly it is hits me hard because yet again I feel like I juggle her issues, keeping them all in the air all so gracefully (at least I strive to..sometimes better than others) and then BAM...you drop something. I knew her language was falling further and further behind. She's now making vowel sounds with intonation. No words other than mom, dad, and yes. She seems to try to say something, just to be unable to repeat it. Imitation is very hard for her. She does seem to understand well what we say and can pick a picture of a card from 2 when we name it. She follows directions and can pick a picture of a food off the refridgerator when she wants something. Signs are going nowhere with her, but we keep trying. I am most definitely in Holland. Trying to learn to love it.
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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 the unique experience to understand it, to imagine how it would feel. It’s like this:
When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “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 flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plans. 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 guidebooks. 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 awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, 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 go away, because the loss of that dream is a 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.
Starting again!
13 years ago
