Road Trip

January 25, 2009

Road Trip

We are off to North Carolina today. We are taking Waverly & Oliver back to see a developmental pediatrician and her team. They evaluated the kids back in May, when we were there to decide if we wanted to pursue the transplant option. The doctor has seen a lot of kids with Sanfilippo and is conducting a long term study on their development. She is an incredible resource for us. It will be a long day tomorrow. The kids will both have a full evaluation from an audiologist, PT, OT, Speech Therapist, and the pediatrician. They keep it fun and they both did really well the last time we were there. Plus, they are quite used to these evaluations and therapy settings.

I think the trip may end up being a bit emotional for me. Just being back in the area is going to bring up a lot of memories from our last visit. That was the most difficult week of my life, leading up to the most difficult decision that I have ever had to make. However, we are so confident that we made the best decision for Waverly, Oliver and our family.

Comments

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.