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.

Monday, February 25, 2013

Trip of a Lifetime

I have been sitting here for over a week trying to decide how to summarize the past three months of our lives, but I don't think there are words for our experience.  Rewind to three months ago: we had several ill family members, Patrick was travelling constantly for work, and doctors had informed me that Claire was suffering from seizures and atrophy in her brain.  To say that we were in an emotionally low place is an understatement; however, by the grace of God, we found hope in Hawaii.

Being in a beautiful, tropical location was simply the icing on the cake. Nothing in this world will ever replace the opportunity for our family to be together as we sought a trustworthy medical team to reassess Claire's condition. Whereas doctors in Shreveport left us with little hope, the doctors in Hawaii listened to our concerns, consulted with one another, and while we still do not have definite answers, we at least now have the peace of mind that we have done everything in our power to find a cause of her currently undiagnosed neurological condition.

The only thing we know for sure is that she was born with less white matter in her brain than normal.  Essentially, this is the insulation that surrounds neurons which impacts gross motor and muscle tone. We still have no idea why or what this means for her future.  Several tests are pending, and the wait will be weeks.

Regardless of what the tests tell us, if anything, we will forever have the memories of these three perfect months together as a family.

2 comments:

  1. LauraFebruary 26, 2013 at 7:56 AM

    Oh my goodness, such beautiful pictures!! Love you guys!

    ReplyDelete
  2. Stacy RomanFebruary 26, 2013 at 4:22 PM

    I love this. :) I'm so grateful that we got to hang out a bit while you guys were here. It's not the same without you.

    ReplyDelete

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