Success

November 12, 2010

Success

Oliver loves his new bed. He spent most of Wednesday evening climbing in and out of it. He slept beautifully that night - 11 hours straight. I even had to wake him up to get ready for school. He was nicely tucked under his blankets, with his ducky in hand. He continues to want to climb up during the day and chill up there. He takes toys, books, balls and scatters them around.

I am so thankful that we were able to get this bed covered with insurance and our waiver. It is going to have an incredibly impact on our family. We can rest easily at night, knowing he can't fall out of bed and get hurt. He is beginning to have the sleep disturbances common with Sanfilippo. Hopefully, this bed will make that phase a bit easier for all of us.

Comments

s.a. said…

That bed is amazing. How wonderful that it will give you and Matt some security and the ability to hopefully sleep at night, knowing he is safe and contained.

November 13, 2010 at 11:32 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.