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, December 7, 2014

Why I run



Why I Run
After an incredibly long day of three therapy appointments, figuring out a referral with Tricare, and work sandwiched between, I whined on the phone to my brother that I just wanted a day of “normal”, a day with nothing medically related and a regular 8-5 job.  He asked, “Have you ever considered that this IS your normal?” Pretty smart – maybe he was right.

There are some moments in life that shift our “normal” so far off from where we envisioned that it is seemingly impossible to comprehend that “normal” is still within personal reach. My first encounter with these moments came at 12:45 on April 16, 2010 with the doctor stating, “Your son has Down Syndrome”. Although this sentence altered life as I had previously known it, the moment was merely a line drive to shortstop. It was the news of Claire’s suspected genetic disorder that sent the ball so far into left field that it left the stadium.

Over the years I have watched my friends and family deal with their own monumental moments. From the deaths of children, spouses, and parents to divorce to fertility issues to other crazy life incidents, I have seen others react with anger, denial, withdrawal, and humor. There is no one right way to handle the repercussions of these pivotal moments. When the responsibility or grief or whatever emotion follows becomes so painful to endure, it is simply about survival. This is why I run.

Nine years ago I signed up for my first half marathon because it sounded like a good challenge, and I was crazy enough to try it. Plus, think of all the beer I could drink with all of those calories I was burning!! Fast-forward to this past July, and my rationale was not quite the same.  Running a full marathon always piqued my interest, but I always had a justification for not doing it. “I’m too busy”…..”Luke is just too little to be away so much”….”Only crazy people run 26.2 miles” – All seemed 100% valid, at least until I had Claire.

In 2014, the kids have had over 400 hours of physical, occupation, and vision therapy in addition to visits to nine specialty clinics. Through these appointments, Luke constantly remains the happiest and most content human being that I have ever encountered. His attitude is something that I can only dream of attaining. To watch Claire struggle to learn every single nuance of daily functioning has taught me the true meaning of endurance.

I watch my friends with their kids, and I marvel at how naturally they progress from one skill to another. If I did not have Claire, this is something I would have never noticed nor appreciated in the chaotic hustle and bustle of the daily lives we lead. The jealousy I used to feel for the ease in which milestones were reached has been replaced by a true sense of awe over how the human body is capable of developing. I looked at myself and realized the God-given gifts of health, motivation, an insanely supportive husband, an incredibly flexible job, and inspiring kids that I was allowing to waste away. So, on that fateful day in July, I joined the San Antonio Marathon Training team and haven’t looked back.

Each week when I run, I am the crazy loon wiping tears from my eyes as 100 of us take off running on the dark trails throughout the city. As the sun rises and we push forward, stories are shared of why we are here. From Cancer survivors to weight loss champions to empty-nesters looking for a hobby, each of us has a reason to challenge our bodies to endure the 26.2 mile race.

For me, it is watching Claire’s struggle. While other kids run around, get into trouble, and play with their friends, she sits at the sideline in her wheelchair, unable to move independently. Since she is legally blind, we do not even know the extent to which she sees the world around her. She has never sat up in her crib, held a bottle, fed herself, or taken a step. Each time she needs to be moved because she is uncomfortable, feels thirsty, or wants another bite of food, she relies 100% on the help of others.

I have the freedom to move as I please, to go where I want, and to do whatever I feel like. So, I run. Training has been an emotional release to savor the stability of our lives in San Antonio, to quietly say prayers of thanks for the support Luke and Claire have, and to celebrate the milestones of this past year. From gaining a pound to signing “more” for the first time, Claire has defied the grim predictions of the doctors in Shreveport two years ago. She will continue to defy these odds, and I will continue to run.  When I cross that finish line on Sunday, we’re going to help her stand to celebrate.

So, here’s to running my first marathon and Claire standing, two things that I once thought were impossible.

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