Splendid Mayhem: UGH!

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.

Thursday, February 12, 2009

UGH!

Logen had a seizure at school this morning. :( He went to the nurses office for a bit to re-gain color and 'perkiness'.

I look like I've been hit by about 10 Mac trucks, worse- I feel like I've been run over by about 35 of them. You know it's bad when a dear friend says you look rough. It has been the week from hell. Pardon my language.

Logen has a Dr's appt this afternoon, will update soon.

Happy Note: He made a 6-hit sequence on his "talker" w/ Ms Gail yesterday!!!!!!! More than once... he did it before he put in every single puzzle piece. Not b/c she asked him to, but b/c Logen wanted to! I was so stinkin' excited!

3 comments:

SheilaFebruary 12, 2009 at 10:06 PM
Big hugs coming your way, Jess! I'll be watching for the update on Logen.
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DroopyFebruary 13, 2009 at 6:13 AM
Hey Jessica, What 'Talker' does Logen use?
My daughter is trialing a 'ECO 14' using MinSpeak,

I hate seizures, Kate has had 3 bad ones but only one at school thankfully.

Hope you get them sorted...
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DawnFebruary 15, 2009 at 11:47 AM
So sorry Jess - I know seizures are so scary. I hope they are able to get it under control soon. Same with the biting, hopefully it's just a stage that he tires with quickly.
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