Splendid Mayhem

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, July 21, 2009

Logen's Blog Is Up!

There's not much there... but I'm slowly working on it! I forgot how much work was involved in the blog start up. I can't remember how to do any of the basic set up stuff!

www.logend.blogspot.com

Sunday, July 12, 2009

Logen Man Update

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

I'm playing catch up on homework now (well, avoiding it actually).

Thank you all for the continued prayers.