Wednesday, August 26, 2009

Welcome to Holland {reposting}

In response to my last post, a dear friend of mine sent me this article this morning, which I have read before somewhere years ago, but it struck a very particular chord in my heart right now since it describes what I am feeling so perfectly. I just wanted to post it to share with you and to keep it in my chronicles as a reminder to myself.
Who would have known I would find myself in Holland?!?

Emily Perl Kingsley.

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 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.

Monday, August 24, 2009

the long road towards acceptance {reposting}

There are times when I think I have come to accept the fact that I have a child with "special needs." He had his first ear infection at 4 mos., first tubes put in his ears at 10 mos., - by 15 mos we knew he had a speech delay and started early intervention. So, for essentially 4 years now, he has had therapy of one sort or another. We are still searching for answers and feel like we may never really know what exactly is going on. But we have spent years trying to figure it out already. You might think we are getting used to all of this somewhat.

I think I used to think that parents of disabled children must come to accept it at some point. But now I have begun to think, do they? Ever? Do you ever get over looking at all the "normal" kids and not fight back the sting of tears as you realize how far behind your child really is? Do you ever stop wondering what you could have, should have, would have done if things had been different - and would anything have made any difference? Because I have to admit I hate sitting in the children's primary class at church with Samuel, when he won't sit with his class by himself, and watch the other kids his age. I hate feeling kicked in the stomach when I don't know if he will ever "catch up" to where they are. I hate all the reminders I see of his "differences." Do other people feel that way too?

I went to register him for kindergarten the other day and felt singled out and sorry for myself that his class does things differently than all the other kindergarten classes. The lady who took our paperwork couldn't tell me when or if they would do pre-kindergarten assessments, or when or if his class list would be posted, or really anything at all. She didn't know about the special needs class, she said. And I know I should get over my own sorry self when it comes to all of this. It's really not about me. It's about what's best for him. And I know that. And I do feel this is best. But it is still hard to be the mom who has to explain to everyone, when they ask who his teacher is, or when they look a little concerned that he's running around babbling nonsense and actually going to kindergarten, that he's in the special needs class. It's hard to feel a little amazed at what the other kids are able to do at his age - and he is just ages away, it seems.

So, today we went in for his pre-assessment (we found out his teacher does do them). He did as well as I would have expected, although it is just nothing like what Abigail and Isaac were doing going into kindergarten. I try hard not to compare. But sometimes, it just slides in like a paper cut and stings all over again. His teacher seems nice, although she is just fresh out of college. I just hope everything works out. The good thing is that there are only 6 kids in his class, with the teacher and 2 aides. So that's a pretty good student-teacher ratio! I'm hoping that with the attention he receives, he will be able to work at his level and make lots of progress.

But I worry about a lot of things. A lot, a lot, a lot of things. And I don't know how to accept what is, and simultaneously work to change what can be. Or whatever. Will someone please tell me how to do this? Does anyone know? Sometimes I don't feel strong enough or courageous enough or assertive enough or like anything I am is enough to do what's required of me as the mom of this child. A new year has begun - and I'm not sure I'm up for it. The road ahead feels long. And I know, I know I'm not the only one traveling this path. And many many many are on a tougher journey than mine by far. Am I the only one struggling to come to terms with this challenge, in whatever degree of difficulty? Is it just me?
Related Posts Plugin for WordPress, Blogger...