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, October 31, 2010

Happy Halloween

What a busy weekend!  Grandma Karen left on Saturday, and Luke was SSSSOOOO sad! He cried ALL day because he wasn't getting as spoiled as he was used to. However, he was so worn out from all the attention that he slept most of the day :) Then, we went to our Ron, Suzi, Joseph, Anna, and Baby's house to carve pumpkins. Patrick is an expert carver, and our pumpkin turned out beautifully. Then, on Halloween, everyone from the 'hood came over for burgers before trick-or-treating. Luke LOVED having the beautiful princess and witch over. Then, later on, Peyton the Monkey came to say hello. Our poor little scarecrow couldn't take much more excitement because he was sound asleep by 7:30.













Thursday, October 28, 2010

Sunday, October 24, 2010

For our classroom friends....

It's another semester, and Mrs. Kilgore's class in Kansas is back to reading our blog to learn more about parenting and raising a child with special needs. One question that her class asked (as have MANY other people) is how severe is Luke's case of DS. Well, the only answer is that there is really no way to tell.  According to all of our doctors/therapists, Luke is just slightly delayed with his gross motor skills.  Since he has low muscle tone, it's a bit harder for him than other babies to sit up, get ready for crawling, etc. However, his social/emotional/behavior characteristics are right on track for where they should be for a typically developing 6 month old. The only thing we can do is keep working on occupational and physical therapy, and monitor his cognitive development as he gets older. Good thing his mom was a teacher and knows LOTS of different ways to help him learn to read and write when he gets older :)

Keep the questions coming!

Saturday, October 23, 2010

Playdate with our friends

While Anna and Joseph's mommy and daddy moved into their new house, this is what we did......
















Wednesday, October 20, 2010

Fun with Ms. Anita at Occupational Therapy

Practicing sitting up with little support.

Yep, it's almost time to crawl! Luke LOVES watching the singing flowers! We even got some for the house because they are so stinkin' cute.

Really? You are going to make me use my arms? I wanted to kick my feet up and roll over, but Ms. Anita insisted that I practice weight-bearing in my arms. I need to do some push ups to build some muscles because I have noodle arms.

We needed some snuggle time to recover from all that hard work! The Santa jingle bells were the perfect reward for all that hard work.

It was the end of the session, so Luke couldn't decide if he wanted to cry or laugh. Here he is getting ready to transfer objects from one hand to another while sitting up.

Monday, October 18, 2010

Busy Week

 Oh my goodness! Sorry that almost a week went by with no blog. We've been very busy...

Luke had his 6 month checkup on Friday, and his doctor couldn't be happier with his progress. He weighs 15 lbs 13 oz. and is 25.2 inches tall.  He passed his developmental milestone assessment, so OT and PT are paying off big time! Ms. Anita and Ms. Jessie will be very happy to hear the report at our appointments this week.  The doctor also mentioned that we can move on to stage 2 baby food, juice, and soft table food. What?!?!?! It is already time for that???? We started the sippy cup adventures on Sunday, and needless to say, it was pretty funny to watch. Luke actually did pretty well with the cup, but he was a little too clumsy for me to help him out and get a cute picture. More to come on that later.

On Saturday, Luke had a much more exciting adventure than visiting the doctor. We went to the pumpkin patch with some of our best friends and their new neighbors. Even though Luke is a little young, it was still fun to get him out and pick out pumpkins. The day was super fun,  minus the insane heat. We had it in our heads that it would feel like fall because we were at the pumpkin patch, but everyone was covered in dirt and sweaty by the end of the day.
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On Saturday night, Patrick's squadron hosted a Murder Mystery Party, so Luke had a babysitter. Our usual sitter, Shannon, already had another babysitting job, so it was time to try out a new sitter. My co-worker's daughter, Aerika, came over to play with Luke. She was especially excited to hear that Luke has Down Syndrome because her little brother also has it! We had a great time talking about our experiences/thoughts about it. Hopefully she'll be able to come over LOTS in the future to play with Luke.

Tuesday, October 12, 2010

Report Card

It is midterm time, not just for Mommy and Daddy, but for Luke! Today, Luke received his first report card, and here is what his teachers said:

My interest in my world and the people in it....
  I love playing in my bed so I can grab and play with my feet. I like to pay with the mobile and other toys that are in my crib.

How I move and play....
    I love my feet and my legs. I want to put them in my mouth all the time. I am starting to like tummy time more and more.

I am working on.....
  My muscle control - holding my head up more and having a little bit more control in my whole body. I am trying to work on holding my bottle with a little support. 

Sunday, October 10, 2010

Lazy Weekend


What a fabulous weekend! Patrick had 2 whole days off work, and it was sensational. The last time we spent this much time together as a family was back in June before Weapons School. Although it's no fun being apart so much, this has been an amazing opportunity for Patrick, AND we have less than two months left! 

On Fridays I usually head to Fast Eddies, my favorite local dive, to hang out with my co-workers until it's time to pick up Luke, but the poor little guy had a rough week and wasn't feeling the greatest. It was okay because we were both super tired. In fact, Patrick got home by 7, and we were all asleep within the next two hours. Then, after I finished a school project, we enjoyed the gorgeous fall weather on Saturday out on the lake.  Afterward, we stopped to celebrate William's 4th birthday party, and then Luke went to his first concert - Sister Hazel.  Well, we're not sure if we can officially say it was his first concert because he slept the entire time, but we'll pretend.  Patrick worked for a bit on Sunday, but we managed to do our fall decorating.  Luke snuggled with MonkMonk while we looked for decorating ideas from other houses in the neighborhood.  





Wednesday, October 6, 2010

New 'Do


Luke asked to wear his hair like this to school, but I told him it might scare off the girls...