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, June 16, 2013

Lazy Summer Days

Several of you have asked why we haven't been blogging lately, and for once, I can say it is because there hasn't been anything exciting to blog about! You all who know us well realize that won't last for long!!! We have been spending quiet weekends at home, hanging out with friends, and going out to the boat. It has been GLORIOUS.

The only big news has been Claire's crazy medical schedule. We're currently in the middle of three doctors, three hospitals, three state tour. She received brand new leg braces from Shriner's Hospital here in Shreveport on Tuesday. They are just like the ones that Luke wore for about a year - only hers are much cuter! Patrick and Claire headed to Little Rock for a GI follow-up, and we finally had a good report!! She will stay on all of her meds and supplements in hopes that she continues to gain at her current rate.  As we push on her developmental milestones, we have to make sure we don't use up all her calories. The big appointment is with a new Neurologist in Forth Worth who specializes in seizure disorders in children. If this guy can't confirm that yes she is having seizures or no she isn't, momma might end up in jail for going postal. If she is having seizures, then it isn't a big deal - we just need to confirm that she is on the right meds. We shall see! Say a little prayer that this doc has some answers.

 This isn't a very good view of the braces, but they are turquoise with flowers and lady bugs. These help stabilize her ankles so she can learn to stand. With her low tone (just like Luke), it is hard to keep her balance.

While daddy and Claire were in Little Rock, Luke and I enjoyed breakfast at Starbucks. My rule is that if one kid has an appointment and daddy can drive, I take the other one out for breakfast. 


 Luke LOVES his new speech therapist, Ashley. He doesn't receive services through the schools during the summer, so we signed him up where Claire receives physical therapy (very convenient for two working parents)! He is starting to say two word phrases such as "throw ball". He can name his colors and identify most animals/animal sounds in a book.
 Ice cream truck!!!!!! Luke had no idea why I suddenly grabbed him off the slide in the backyard and bolted out front until he was enjoying his summer treat.
 Did we mention that the little peanut always wants to eat now?!? This is probably her favorite seat in the whole house. Her teachers have been very happy with how well she's eating now during meal/snack time.
 When she isn't eating, Claire likes to get in a good workout. Being on her tummy is still her LEAST favorite; however, she doesn't mind if she can be up on all fours.

 But, sometimes she would rather just chill on daddy's shoulders.


Occasionally, Patrick and I actually make it out together. There was a military function at one of the casinos, so we enjoyed a fancy night out with a bunch of friends.

But our favorite thing to do is enjoy a quiet night at home. Patrick is happy that Luke loves to cook as much as he does. We can't make anything without our little assistant helping.

 The weather is so nice that we have been able to spend several evenings out on the boat. Whereas last year Luke was terrified, he can't wait to jump on board. Claire loves the wind blowing through her tuft.
 These two are starting to be good friends. If we ask Luke to go play with sister, he usually does. I don't know if you can see the tv, but our daily tradition after school is watching Ellen together!



Sometimes Luke enjoys the new friendship more than Claire does.

But it is the moments like this that are priceless.