Saturday, February 21, 2009

An Interesting Perspective


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.

Dear Dwell #1

I received this letter a while ago, but I just thought I would post it, along with my reply, and see if anyone else had any suggestions

"I am the father of a 4 year old boy who suffers from C.P.

He just lives life to the max. He is affected down his left hand side and has no use of his left arm.It would be great to here how life has progressed for kids your age as i often worry how he will cope as he gets older.Especially when he hits his teenage years.

We recently went to meeting which gave us great insperation meeting other parents and being able to talk about the things you bottle up.

My biggest task at the moment is trying to find him a bike . This is how i came across this site. He was broken hearted when Santa didnt bring his bike this year. I need to find a bike with a training pole and suitable support......,. any ideas?

I look forward to hear from you in the near future."

"I am so glad you replied to my post! Thank you so much!
As a matter of fact I know just the think that could help your son with his bike riding. A couple of summers ago I attended the Stride Bike Camp near my grandparent's house in Albany, NY. It is a week long day camp and it has many locations around the US. Anyways, they teach kids with disabilities to learn how to ride bikes with these really cool bikes that involve rollers instead of wheels. By the end of the week I was riding a normal was so thrilling.

Anyways, after the camp they recommend specific bikes for each person. They also recommend types of training poles to fit on the end of bikes for extra support. Right now I'm out of twown, but when I get back home I'll try to send you some pictures of my adapted bike. I got the traininig poll from the program, but I'm sure your could email them on some ideas on where to get one for your son.

One more thing, is it okay if I post your email on my blog? I think it could get some interesting feedback!

The blog URL is . Don't be suprised if it looks very bare! It's just getting started! If you would like to be added as a contributer just tell me, and I will email you a request.

I hope all this helps! I can't wait to hear how it all works out!"

Any suggestions?

Tuesday, February 3, 2009

Random Was Its Name-O

Yup, that's exactly what this post is: random! Though I think random is the most entertaining!

Well, today I had to turn in an English essay ("writing assignment") that metaphorically compared myself to something. At first I chose chicken pox, but then i thought ewww and changed to something a lot sweeter the glorious Golden Retriever. I wanted to somehow include something about having Cerebral Palsy so here is how I did it:

"My seemingly biggest physical weakness has surprisingly come as my biggest physical strength. See, as a young pup I developed a limp that kept me from such activities as rough housing around with a ball at the dog park. This limitation that at first brought much sadness has in fact blossomed into much joy. This is because my owner signed me up as a service dog. I really appreciate the opportunity to participate in this experience because of my ability to be empathetic towards both humans and other dogs. I now care for humans at places that are as dear to me as my favorite fire hydrant.
At my first favorite place, where humans look worn and aged, I clutch the newspapers of the residents in my jaws and bring them to their bedsides, in return for a pat on the head and a chuckle. When I visit the place where humans are attached to lots of tubes and machines, I curl up next to them and quietly listen to their problems. They, of course, pretend I am listening because all they know is that I am a dog, but what they do not know is that I listen and sympathize with everything they’re saying."

In other news, topics, things...

Later this week I am planning to write a bio for this blog, but I think I'll start by given my 25 things list via Facebook

Something Borrowed, Something Blue, and Something New

1. Something Borrowed: Some books and clothes!

2. Something Blue: My straight leg, skinny Lucky Brand Jeans (They were on sale!=D)

3. Something New: The new plate rack that I bought on Etsty to hold random junk! Yay! I love it!

Now I'm done with the theme, so it's time to write about stuff about myself that is sadly without a real theme!=)......

4. I was supposed to be a Valentine's Day baby.

5. Feta cheese and collard greens are delicious.

6. I don't trust people easily.

7. This year I'm trying to be more optimistic.

8. Even though I'm very liberal, I think abortion is wrong.

9. Someday I would love to be fluent in Spanish.

10. I think a life filled with friends and happiness is much more important than success, or did I just described the definition of success?

11. I would love to go to an all girl's college. Don't ask me why....I don't even know!

12. I've known most of my friends for years and i love them all!

13. My religion is very important to me, but I won't try to force my beliefs on other people.

14. I'm afraid of the dark and crazy serial killers.

15.I'm a romantic who hopes she doesn't grow up to be a crazy cat lady because that would suck!

16. I think hippies are the coolest people ever!

17. I'm terribly afraid of snakes and the dark!

18. I could have gotten my permit in May and I still haven't.

19. I would consider myself a writer, but i have no idea how to use a comma even if my life depended on it.

20. I think Jackie Du Pre is the most inspirational person ever!

21. I think all Fanny Packs should be burned!

22. I would love a red kitchen aide mixer or a waffle maker (homemade paninis yummy!) age 16...ahahaha

23. I would love to have a temporary Henna tattoo on my hand.

24. I laugh at almost anything and love when I get deliriously happy!

25. I have very expensive tastes!