Tuesday, May 26, 2009

I am feeling better today - actually I have been feeling better. Sometimes you have to get the crap out so the resolve can come in. And the resolve is here. There is no avoiding anymore, because if I do, then any future failures are all on me.

I have been working on schedules and plans to keep her busy, but not too busy. Keep her under supervision but not feeling like we dont trust her. Coming up with projects she can do with me at my office - because she loves working at my office - this summer, and "helping" my friend Jennie at her daycare - which translates to, Mantha thinks she is helping, when really we are having her "visit" a few hours each morning.

I talked to school again today, and also talked to a friend who is very versed in petite mal seizures and we have decided we are still going to have Mantha tested for them. After the initial conversation last week they fell off the radar - or at least what I was comprehending in the conversation. That is why they called today - to make sure I knew that they still agree it may be part of the issue.

So I called the pediatrician this morning to see what we need to do to get the ball rolling, and the first step is a sleep deprivation study. We are scheduled to have the study done with the pediatrician she used to go to in Minneapolis in August. They were not concerned about getting her in sooner, and were confident that unless we noticed serious issues, there was no reason to rush the study.

So that is that. Its not the end of the world. Its just a big fat sassy slap in the face.

I received two emails and one comment recommending reading "Welcome to Holland". The comment was to "re-read" as she knew I already knew the story.

by Emily Perl Kingsley

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 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 guidebooks. 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.
blog comments powered by Disqus