We are on vacation in Holland

Several people have been asking for an update for a while now. The reason why there hasn't been one is because basically nothing has changed. We had a phone conference with Dr. Lacchwani on October 10th; Philippe's best option is surgery to remove the malformation, which is over 1/3 of his brain. 

Beyond the obvious hurdle- that brain surgery is a VERY scary thing for any parent to think about, another down-side is that they would have to cut into the motor strip in Philippe's brain, which would make the left side of his body noticeably weaker for the rest of his life: he will most likely not have fine motor function in his hand, and walk with a limp. Despite all that, it's his best shot at life: to learn and understand things, to communicate, to do all the things life has to offer. Most likely, we will do the brain surgery, but right now we just can't make that choice... yet, anyway. 

For now, we are going to enjoy the holidays and pretend like everything is fine. At the end of the year, we'll make our decision. 

Recently a friend gave me a famous piece of literature that I'd like to share:

"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.

Emily Perl Kingsley  1987"

Maybe, someday, we'll make it to Italy. We've even been offered a ticket that might get us there: brain surgery. But right now, we are on vacation. So here we sit, enjoying Holland.