Heat Wave

Heat Wave

It was another rough night. I love watching the video of Waverly, but it makes me incredibly sad. I had a difficult time sleeping last night after so many viewings. I wish I could free her from this awful disease. I hate Sanfilippo!!!

We are hoping to enjoy a beautiful weekend. We plan on taking a train to see Leeds Castle as some point. We may end up at the pool or fountains again due to the heat. It is almost 80 degrees, which is a real heat wave!!

At some point I need to think about beginning to get organized for our pack out scheduled for next week.

Comments

pknelson said…

I loved watching Wavy on the video.
What a precious girl. It is obvious she is loved. Praying....

July 25, 2008 at 1:11 PM

Mystic Thistle said…

I found your blog through fern's. I find myself praying for you during the day sometimes. Your children are so beautiful in the photos. I hope the move goes well.

July 25, 2008 at 3:27 PM

Mike and Sarah said…

I loved Waverly's video. My favorite part was when she and her friend were dancing and stomping their feet really fast. So cute. I can imagine how that video gives you mixed feelings. I was in tears at the end of it... crying at how unfair everything is. It shouldn't be this way...

July 25, 2008 at 7:51 PM

Jen said…

I'm praying constantly that some brilliant researcher out there is about to stumble on a cure, and Waverly and Oliver will be the perfect candidates. They are on my mind all the time.

July 25, 2008 at 8:51 PM

Welcome to Holland

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 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.