Welcome to Holland by 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.

Wednesday, February 9, 2011

Double Wammy and a Single Bright Note

Well, it hasn’t gotten any better yet, in fact, it has gotten worse.  I got news yesterday that usdb is on the chopping block too.  I am even more upset about this because through all of this Oakridge stuff going on, will and I felt like Mitch would be ok as long as he had his intervener.  if usdb goes as well, we might as well keep Mitch at home.  the legislators want the school districts to pick up the services that usdb provide now, but what a joke?  our district wants to shut down our special school for our special children!  they won’t care about making sure Mitch has an intervener, much less spending money to train someone to communicate with my deaf blind child!  I am so frustrated that it is always the special education to get cut first.  I guess one good thing about all of this is my public speaking skills are, well, still no better.  ha!  I’m getting a lot of practice though.  Here is the article if you want to read it… and if you want to help, please contact our legislators and tell them what a negative impact this would have on these children. 


on a brighter note… we thought for s**** and giggles we would try to apply for ssi again.  just to see what would happen.  its been years since we’ve qualified for that… wow we really have gone back to the days when we first brought Mitch home… anyway, we took all of our paper work over to the ssa building and sat down with the lady and an hour later we were setting it all up.  mind you, this is the exact information we have given to Medicaid over and over and over… oh!  what?  finally someone sees that we actually had a significant loss and no income showing on our taxes!  huh?  is workforce services actually that dumb!?!  I think so.  This made us oh so happy because, like we told the lady at ssa, all we want is insurance for our son.  guess what?  we got it!  if you qualify for ssi, you automatically qualify for Medicaid!  yeah!  Mitch finally has insurance!  What a weight off my back.

3 comments:

  1. OMG!!!! Thats HUGE!!! YAY Court! What a blessing. Of course Mitch needs insurance too! Seriously the system is so jacked medically and with mortgages too. But we have good news too so when we play next week I will feel you in :) I am SO happy for you guys! Such great news! Its about time good things are happening. LOL!

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  2. That is such good news!! Yay!! Sad I could go with you this morning but let's go soon. Love you SO much Court!

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