Splendid Mayhem: Need To Vent!

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.

Wednesday, September 2, 2009

Need To Vent!

I spent 3 hours at the doc for myself today. I am so used to doing this for Logen, that I am ok with it. I have accepted that. I have accepted that there's not always good news when we pack up and head to his doctor's appts. It's just how it is. However, when it comes to me- I've expected to go and leave without "bad" or "crumby" news. Today, I went into for my hospital stay follow up. We went through my labs, etc. I kid you not, that stack was forever thick. My labs were so messed up. Things were too high, and too low. So, the doc ordered all of those again today. The one I am most concerned with is the ANA-titer. Mine is too high. Everything else is too low. I guess I just sat there with that, could anything else possibly be wrong? There are several things this could mean. I'm not going there, we will just hope for the best. It has to do with your antibodies though. I got a referral to a Neurologist for migraines (that have been around since before the heart stuff), but I wonder if all of this stuff isn't related in some odd way. like all of Logen's weird stuff??? Doesn't it all have to add up somewhere?!?!
Anyway, that's my deal. I want to be fixed. I'm done with the bad. Oh, Saturday's call... yea, I'm just sick of talking about it. Not what I wanted to hear. A heart procedure is in my future. I will elaborate in the next week.
Our family is in the need of more prayers :) Thanks!