Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


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.

Tuesday, May 30, 2017

Tooth, Blood and Lunch: All Lost

We're having a hard time with losing things around Casa de Godinez.

On Friday, I was feeding Claire a snack, and I suddenly noticed that her mouth looked very strange. After a second look, I realized that she was missing her bottom tooth!!! It was just a wee bit wiggly earlier in the week, but apparently I needed to check more frequently.  Loss #1:  Escape artist tooth...never to be found

While I was checking Claire's other loose teeth, monkey-child climbed up on the ottoman to look out the window. Rather than waiting patiently, she tumbled off the side, catching her entire squishy body with her front teeth. Luckily, only blood was lost, and her teeth are all positioned much more securely than Claire's. Loss #2: Blood...lots and lots of blood.

As I was mopping blood off the hardwood floor, Luke continued to complain that his stomach hurt. I attributed it to the crazy end of year parties. Pizza, candy, popcorn, partying, etc. will make anyone's stomach hurt. I told him to go lay down and rest, and he lost his lunch while resting in my bed. Loss #3: Lots of party food in the wrong form.

While we were visiting with Patrick on FaceTime on Monday, Claire didn't want to be outdone by Luke, so she opted to lose her lunch while eating lunch. Guess it hadn't been too much party food for Luke. Parenting fail. Loss #4:  Lunch gone wrong.

So, while we are on this trend of losing things, please cross your fingers that Aubrey and I don't follow in Luke and Claire's footsteps. Otherwise, Loss #5:  My sanity.


Friday, May 12, 2017

Ice Cream

Some weeks, the monotonous repetition of therapy makes me want to scream. But sometimes, there are those perfect moments that make every second of appointments 100% worthwhile.

The other evening we were at Chick-fil-a for dinner. It was dreary and rainy, baseball practice had been cancelled, and I didn't feel like cooking. Luke was able to burn off some energy, we bumped into friends and chatted, and the girls enjoyed their chicken nuggets. When we were packing up to leave, Luke announced that he wanted some ice cream. The line was short, so I told him yes. As I reached over to grab my wallet, Luke held up his hand and said, "No. Stay mom."

He took the dollar out of my hand, scampered up to the short line, waited patiently, and when it was his turn, he looked right at the lady and said, "I want ice cream". Without missing a beat, she accepted his money, gave him change, they chatted and she handed him the ice cream.

For the first time, I didn't have to translate once.

Complete independence.

I'm not sure who was more proud at that moment - me or him. But, I do know that we owe that moment to our amazing therapists - past and present - who work with the kids, convince me it is worth it, and never give up.

Luke enjoyed his ice cream, and I cried the whole way home.