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.

Saturday, August 5, 2017

The Surprise - Part I



During deployment, time is a strange thing. The hours drag on, but days fly by as one blends into another in a monotonous routine of survival.  189 days - 4536 hours - 272,160 minutes of filling an emptiness that deployment thrusts upon a family. We were going to figure out how to make time pass quickly, but I wasn’t quite sure yet of the details.


When I was driving Patrick to the airport, we were discussing all of the random things I would do with the kids while he was away.  I casually asked, “What would you do if Claire learned to walk while you are gone?”


“I’d shit my pants,” he replied seriously.


Challenge accepted.


As long as deployment seems, the time since we just put Claire into a walker February 3, 2015 seems like an eternity ago. Her therapist was convinced it was time to get her “vertical”, but she lacked the strength or coordination to propel the walker forward. However, as you pulled her arms, she moved first her right leg and then her left. Two small movements to give us a glimmer of hope that walking would someday be possible.


Fast forward over two years, and that day was still not here.  Despite countless therapy appointments and hours of practice at home, she simply stood there in her walker unless someone pulled her arms or pushed the walker from behind. At some point, hope begins to waver. At doctor appointments, I sometimes can’t decide if I want answers to the questions in my head, but we all know that my filter doesn’t always work well. During one appointment about a year ago with her orthopedic surgeon, I asked if he thought she would ever walk. He paused, thought carefully, and firmly replied, “I don’t know. But, I do know, that if she is going to, most patients walk by the time they are five or six. After that, the odds just don’t seem to be in their favor.” Clearly, he didn’t have a filter either, and I love him for his brutal honesty. The clock was ticking more loudly than ever after her fifth birthday in March.


The week before Memorial Day was especially frustrating. Luke had come down with a stomach bug, work was crazy in anticipation of the long weekend, and I was in a foul mood because I despise holiday weekends when Patrick is away. Per our usual evening routine to help time pass quickly, I was sitting on a little scooter in front of Claire, alternating between pulling her along a few feet and letting her stand there to see if she would move on her own. In one of my less stellar parenting moments, I angrily pleaded with her, “Will you please just move your feet.” I stared at her, willing her to move before I completely gave up for the night as was the case every other night.


The walker inched forward.


I lost my ever loving mind.


Sobbing, I begged her to take another step.


She started laughing hysterically, and then she inched the walker forward again.


Step after step she propelled the walker forward about three feet, the wheels of the walker smearing my tears across the floor. In that one moment her entire world shifted. 


And we weren’t going to tell a soul other than the nanny and her therapists. We had two months to practice for the best surprise ever.


To Be Continued…..


No comments:

Post a Comment