Big Boy

January 13, 2009

Big Boy

Oliver had his 2 year check-up today. He has been terrified of doctors ever since he was strapped down at the ENT's office to remove ear wax. He cried the moment we got in the office, but our wonderful pediatrician was able to calm him down and get the exam done. He is one BIG little boy - totally off the growth charts. He is such a happy little guy, who is beginning to assert himself as only a 2 year-old can.

I have had the wonderful opportunity of communicating with some other moms who have children with Sanfilippo. Last night I was checking out their websites and I just fall in love with these kids. I only wish I lived closer to some of the families. What a treat to visit with these other moms and allow the kids to play with one another. There is a conference for MPS families in FL this December. We have been tossing around the idea of going. After watching some videos of the kids and looking through their photos, I have to go.

Comments

Jen said…

You do have to go. The coincidence of it being in Florida, near Disney, is too much to ignore.

January 14, 2009 at 8:38 PM

Anonymous said…

I know what you mean. I lost a child 4 years ago and recieved so much comfort from other mommies who had walked the same road. I was a part of an online community called MISS and made life long friends. I am sure that going to the conference would be wonderful!

cscosby@bellsouth.net

January 15, 2009 at 8:41 AM

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.