Splendid Mayhem: Seizure Update

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.

Tuesday, October 21, 2008

Seizure Update

The APN at Logen's Neuro's office called to check in on "Mr Logen" today. Dr Brunstrom was headed to a conference this afternoon and wanted to see how he was before she left. How amazing is that?!?!
She took down some notes (the latest... well, still not a day w/o a seizure. He's having atleast 1 or 2. Lasting 10 seconds to 45s/1 minutes)
She felt like the next step would be a referral to the Epilepsy Center in St Louis. Our fingers are crossed as we think this would be beneficial to Logen!

2 comments:

KieraOctober 21, 2008 at 10:50 PM
Jess. To begin, that is wonderful that you have a dr who cares so much to ask him to come in so that she can run the tests before she goes :)

I am sorry to hear about the seizures. I am keeping fingers crossed that you get the referral that you need.
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Popcorn HouseOctober 22, 2008 at 7:37 AM
Thanks for the update, I have been thinking about you guys. Keep us posted! I am so glad that you have a great doctor working with you guys!
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