Toga! Toga! Toga!

Toga! Toga! Toga!

Tomorrow is MPS Awareness Day. Please wear purple, wear a purple ribbon (the color of courage) and spread the word about MPS. There is currently no treatment or cure for Sanfilippo. We need to raise awareness, so we can encourage more research funds to find a cure.

For some reason Oliver LOVES getting all wrapped up in his towel after a bubble bath. He then wants to wander around the apartment. He always looks like he is off to a toga party.

We got Waverly's hair cut last night...always an ordeal. She actually did great! We went to one of those kid places at the mall and they put Dora on for her. We had to strap her to her seat, I held both of her hands and gave her a lollypop. She stayed still for about 7 minutes - just enough time for a cute bob cut and bang trim. I wish we could lose the bangs all together, but the grow out stage is just too difficult.

Comments

Laura said…

I just tried to clip Julie's bangs back. She pulled it out in about 2 minutes. I guess we are going to just get them trimmed. Let me know how the haircut goes in the next few days, and maybe I can take some pictures in to show the hairstylist for Julie's cut. They can be twins!!

May 14, 2009 at 7:30 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.