Wednesday, January 12, 2011


A blog about a child with special needs is not complete without talking about Holland!

"Welcome to Holland" is an essay, written in 1987 by Emily Perl Kingsley, about having a child with a disability. 
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.

Here goes nothing

I am excited to start this blog about our special baby girl Callie!  At 14 months old, she should be considered a toddler, but Callie is a still a baby in many ways.  She is tiny (weighing in at just under 16 pounds... less than 1% on the growth chart) and has the motor skills of about a 6 or 7 month old.  She can roll over and use her hands, but is still working on sitting independently.  She is just getting the hang of eating solid foods and does not have any speech sounds yet ("mama", "dada", etc.).  These delays are due to a very rare brain disorder called polymicrogyria (PMG).  We did not know about her condition until she was 5 1/2 months old when she started experiencing infantile spasms, a type of seizure.  The diagnosis was devastating to say the least, but we have adjusted to our new normal and are optimistically moving forward.  We are so blessed to have Callie and we love her so much!

I am starting this blog to keep our friends and family updated on Callie's growth and progress.  Hopefully it might also help someone else who has a child with a similar diagnosis.

So here goes nothing...

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