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.

Sunday, January 29, 2017

The Birthday Party

After Claire was born and doctors suspected something was wrong, our minds were instantly consumed with what life would be like for her from a medical standpoint. As doctors struggle to put a name to her diagnosis, we constantly repeat the same history...the same statistics....the same list of meds...the same list of missed milestones. Somewhere in the midst of those clinical hours, you build up an emotional wall from keeping those same grim lists from hurting so much each time you think about them. Patrick said it perfectly one time - "Sometimes, I feel like we are her caregivers and not her parents."

Behind that emotional wall is the acceptance that your child won't have the same social experience that you grew up with. Looking back on our childhoods, many of our memories involve our friends. What would the memories look like for a child who can't even speak or walk? This weekend proved that those disabilities do not have to dictate a different childhood.

Claire was invited to a classmate's birthday party.

I will be honest - I cried when I opened the invitation. Then, I cried some more as I e-mailed the mom to explain that Claire in in a wheelchair, but I wanted her to participate in the party at the jumpy place (in case she didn't know Claire). Would it be ok if I stayed? It is hard to find a babysitter on a Saturday morning, so also needed to bring my other two kiddos. She probably thought I was nuts. I cried some more when she instantly wrote back asking what she could do to help Claire feel more included.

Walking into the party, I was a wreck. As much as I wanted Claire to participate, I did not want to face the awkward moments of trying to explain why she couldn't jump or say "Happy Birthday" or eat with everyone.

There were no awkward moments.

Every single child who was there from her class ran up to say hello. Some kids asked Luke to go play, and the grandparents instantly offered to take Aubrey so I could help Claire jump. After I clumsily pulled Claire through the little-kid-sized opening into the jumpy castle, we were surrounded by her classmates. "Hey! Look! Claire gets to jump!!" one little girl said, and "Oh, your Claire's mom - we play with her at school!" said another little boy.

For those few hours, I wasn't Claire's caregiver. I was the parent of a little girl at a birthday party having fun with her friends.

Best. Feeling. Ever.




Thursday, January 26, 2017

Hug, please!

While growing up, most of us were told not to talk to strangers.  Parents hurriedly shush their children when they curiously try to strike up a conversation with adults and mutter a quick apology. We walk in and out of restaurants and stores while barely making eye contact with those around us.

The truth is - there are a lot of lonely people in this world. Whether it be someone who has suffered the death of a spouse, someone who has just gone through a divorce, a grandparent living far away from grandkids, or a family split apart during deployment, so many of those around us are lonely. And yet, we carry on about our daily business emotionally isolated from others nearby.

Until you go out with Luke.

As we walked into Starbucks this morning, he instantly waved to two ladies visiting at the table by the door.

"Hi! I'm Luke. Getting moo cow and a cake pop!" he said without missing a beat.

As the ladies laughed and waved hello, he scampered off to get in line.  While waiting with his box of chocolate milk, he grabbed my arm and said, "Look mom! A cowboy!!" Before I could respond, he wiggled past the others in line to tap the hand of the cowboy who was four people ahead of us.

"I like your hat!!" he yelled enthusiastically. "I'm Luke. Hug, please!"

After looking to me for approval, the cowboy bent down and gave Luke a hug. "Hi Luke! It's nice to meet you. I'm cowboy Justin. Your hug sure made my morning."

Although I probably won't go around asking to hug everyone that I see, smiling and chatting with those around can quickly make the day better. Maybe it was the friendly gesture by the cowboy, maybe it was the coffee in my hand, but the chaos of the day didn't seem so bad as we left....after we said good-bye to everyone else in the store, of course.