Splendid Mayhem: YAY! An Added Appointment.

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, March 26, 2009

YAY! An Added Appointment.

St Louis called this morning and they were able to get Logen in to see the Epilepsy specialist right before we see Dr B! I am very excited about this. They said they had to go straight to the Dr and presented Log's case and he said, "Yes. I want to see him. Put him down at 1." YAY!!!!!!!!! We are excited!!!

I am also waiting for the nurse to call me back regarding his meds. He's been on 15mg of Topamax for 1 week now. Since he's been ill, I'm not sure what to think of it. I can't say we've seen an increase in seizures - but we never do when he's ill - so? Guess we go from here. We will begin to taper off of his Keppra (another Yay!) I hate that stuff!!!!!!!

2 comments:

KieraMarch 26, 2009 at 9:40 PM
I am glad to hear that you were able to get in with an epilepsy specialist when you are in town also. That is great that you can take care of multiple appointments during the trip.

How is everything else going for you? I think of you often and am amazed by your strength to balance everything!
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ErinMarch 30, 2009 at 7:39 PM
I am so gla you got in, keep us posted. I am still praying for all of you, you are amazing hang in there
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