Living with Oliver

I am borrowing a little story from the blog of a parent I met through the CDG family network as it describes very well how I feel most days.

She also has a son named Oliver who is affected by CDG. Her little Ollie has come SO far in his 3 years of life and he is a BIG inspiration for me. I look through his photos and videos when I am trying to imagine how it could be possible that my little lumpy blob could someday sit or crawl or even walk with a walker. But I am trying very hard not to give up hope. I just have to keep reminding myself that Oliver CAN reach milestones even if he hasn't yet...and not to count him out yet....and hopefully getting control of the seizures will be our first step toward that.


As you can only imagine, it is very difficult to describe our experience. This writer puts it into a unique and valid perspective.

Welcome to Holland

By Emily Pearl Kingsley

Experiencing a Child’s Disability

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 guidebooks and make your wonderful plans: the Coliseum, the gondolas of Venice, Michelangelo’s David. You may learn some handy phrases in Italian. It’s all very exciting.

After a few 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. You’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 flashing 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. 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 have 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.”

The pain of that will never, ever, ever go away, because 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.