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, March 8, 2015

Donated to Science, Fire Alarm, and Double Digits

What better way to spend the weekend than getting donated to science?!?! A few months ago, Claire's physical therapist, Ginny, told me about a continuing education course on gait training that she was taking here in San Antonio. She casually mentioned that they are always looking for demo clients and asked if I'd like to donate Claire.....um, yes!!!! When the instructor called to learn more about Claire, I joked that I also had a four-year-old with Down Syndrome if she was looking for another demo. I don't know who was happier - the instructor for finding two kids from one family, or me knowing that we'd have something to fill an entire weekend!

So, off Claire and Luke went Friday afternoon to donate themselves to science. When I first heard about the course, I didn't realize it was a national course. Therapists from all over - LA, Atlanta, Dallas, NYC, Duluth, and Denver - were gathered in San Antonio to learn how to improve muscle function to facilitate independent movement in kiddos of all developmental stages. While Claire worked on planting her entire foot on the ground to go from sit to stand, Luke built abdominal and calf strength to improve his gait, walk down stairs with more stability, and actually get some vertical distance off the ground when jumping.

I'm not quite sure if it was more inspiring to watch so many talented therapists in one room, or to see so many children with diverse needs work towards independence. From little babies just learning to crawl to high school students working to leave their wheelchairs behind, all kids in that room had one thing in common - their lives are intertwined with the care and support of therapists who don't care how long it takes to reach the next goal. They have the patience of saints through the frustration of  working with body parts that don't quite cooperate, and they also wipe away their own tears of joy during the moments of victory.



The best thing about the weekend wasn't all of the extra awesome therapy - it was the sleep that followed!!!! Both Luke and Claire were EXHAUSTED.....and I was the happiest mom on the face of the planet. Not only did I get to watch an entire movie without interruption, but I took a bath, surfed the internet, and sat in blissful silence. That is, until the stupid smoke detector decided its battery wanted to die. Most of you are probably thinking of that annoying soft chirp that many make when the battery is low. Nope, not mine. "Warning: Battery is low."......"Warning: Battery is low." Really??? I have never been so happy to find a 9 volt battery in the junk drawer in my entire life. I hauled the step stool upstairs, and thought, "How hard can this be?" as I looked up at the annoying little machine.

There was a little button in the middle that I thought said, "Press Here to Open".

"FIRE!!! FIRE!!! FIRE!!! EVACUATE!!! FIRE!!"

I frantically pressed the button as quickly as I could.

"WARNING. CARBON MONOXIDE HAS BEEN DETECTED. EVACUATE."

Ahhhhhh!!!!!!!! Press press press

"FIRE!!! FIRE!!! WARNING. CARBON MONOX - "

Guess what - the button didn't say "Press Here to Open". Upon further examination, it really said, "Press Here to TEST". Oops. My next thought when straight to a time when our security alarm went off and the police stopped by to make sure everything was ok. The last thing I wanted was for the stupid fire truck to come blasting through the neighborhood. So, it was time for the first middle of the night phone-a-friend!

Me: "You better not have your &#^@ phone on silent!! Hi!!!"

Patrick: "Why are you calling in the middle of the night?"


Me: "So, if you accidentally set off the fire alarm in the middle of the night, does anyone come to check to make sure there really isn't a fire?"

Patrick: "Nope. They sure don't. Go to bed."

Me: "I'm scared."

Patrick: "But there wasn't really a fire."

Me: "I know. But now I'm awake. Want to talk?

Patrick: "Go to sleep"

Me: "Hey! The good news is that we're down to double digits left on this deployment!!!"

Patrick: "Good night."



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