Cerebral Palsy Kales Story: Kales Diagnosis

Welcome

This site is not just for those who have children with Cerebral Palsy but those who have, know, or who are disabled people. This sites intention is to help those who dont know, and for those who do to help others. I want this page to be a ongoing learning experience where we can share our experience and help eachother. As a special mom its hard not knowing and not having people to relate to. I hope this will provide comfort somewhere to as many people as possible. Please share and comment as much as you would like!

Monday, October 18, 2010

Kale our beautiful son, was born at 29 weeks gestation with no complications through vaginal delivery, drug free.

Kale had/has:

Interventricular Hemorage Grade 2
Periventricular leukomalacia (which he has severe)
Cerebral Palsy Spastic Quadriplegia
Infantile Spasms also known as West Syndrome (video)
Visual Cortical Impairment
Acid reflux.

A Great Story to help those without disabilities relate

Welcome to Holland

"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 .

copyright Emily Perl Kingsley, 1987.

Cerebral Palsy Kales Story

Welcome

Monday, October 18, 2010

Kales Diagnosis

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