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, July 23, 2012

When She's Not Being Beaten with a Cup of Goldfish....

....Claire is starting to love time by herself on her playmat. We discovered that it probably safest to have playtime after Luke is tucked away in bed. Yesterday, Luke apparently wanted to share his cup of goldfish with Claire, and when she didn't respond, he tried to get her attention by whacking her with the cup. At least he was trying to share! This is how the rest of the night went down:
 Luke: "Mom, I was just trying to share my food. Why do you think that means I want to share my beanbag chair?"
 Claire: "Haha sucker! I win. Get lost and go to bed."
 Claire: "Whew! Glad I finally have the living room to myself. I think I'll scoot around on my mat."
 Claire: "Wait a minute. Is anyone paying attention to me?"
 Ohhhh....look at that block! If I could just get a little closer....
Stupid block wasn't that much fun. Now my dang arm is stuck.
Hold me, Mommy!!!!

Sunday, July 22, 2012

Event-o-meter

So, it all started Friday night when I didn't feel like staying at home. When Patrick travels for work, I decided to start a little tradition with Luke. Once on the weekend we go on date night, and while I typically save it for Sunday, that just seemed too far away this weekend. After work, Luke, Claire, and I loaded up into the car and headed to the best spot in town - McDonald's. Luke I and shared 100 packets of ketchup, chicken nuggies and fries while Claire slept. -Rating on the event-o-meter: 1.0

Then, we (I) decided we should go to Target. I zipped through the store picking up the odds and ends I needed without delay because we were getting close to bed time. I thought I had managed to pull off this feat successfully, that is, until we were in the checkout line. Claire had decided she needed to be held while shopping, so it was much easier to just unload the cart with one hand than listen to her scream if buckled back in her seat. So there I was unloading items one at a time when I looked at Luke out of the corner of my eye. His face was red....he was staring off into space.....tears were coming out of his eyes. No, he was not choking....he was POOPING!!! For anyone with a toddler, you know that their poop smells like real man poop as soon as they start eating real food. The lethal scent began to tickle my nose hairs, but I pretended not to notice and picked up the pace on unloading the cart. Just when we were about to make our escape and I had whipped out my credit card, Claire's face turned the same shade as Luke's, only she wasn't kind enough to keep her business contained in a diaper. Instead, she hurled her guts out down my shirt, inside my shirt, splattered on the floor, the cart, and between my toes in my flip flops. Oh no. Unfortunately, I had not been restocking my paper towel supply that day, so as I rummaged through the diaper bag looking for a burp cloth the nice target lady just stood there staring at me. Thankfully, another lady who was checking out a few rows over ran to help saying, "I have four kids! Let me help you!" aka "Oh, you poor soul! You must be so embarrassed! This happens to every mom at some point or another so let's get you the heck out of here before this gets any worse!" - Rating on the event-o-meter: 5.5

Fast forward to Sunday afternoon. Both kids had been angels all morning, and much to my amazement, both seemed ready for a nap at the same time. Typically, Luke sits in bed, reads a book, sips on his water, chit chats with his imaginary friends, and goes right to sleep; however, that did not seem to be the case today. Claire drifted right off to sleep in her swing, but Luke seemed extra talkative. I didn't care because I was determined to squeeze in a workout while I had the chance. When I was done, he was still talking, but not crying. Translate this to: "GO TAKE SHOWER NOW WHILE PEACE EXISTS!!!" By this point, he had been in his crib for almost two hours and still no sign of a nap. He was yelling more than peacefully talking, so I gave in and finally headed for his room. Then it hit me: that smell. Yep, the same smell that tickled my nose hairs in Target. The panic set in because, did I mention that Luke's new favorite activity is to take off his clothes? Before I even opened the door, I knew it wasn't going to be pretty, and there was no one to save me. I turned the handle, pushed open the door, and tried not to gag. There he was -  A happy little two-year-old jumping up and down in his crib, butt-ass naked, with poo smeared across the bed, on the crib, and a few little chunks on the floor. Holy shit. Now, I know you think this sounds funny, and it was in a sad "you are by yourself and you can't leave shit smeared everywhere until Patrick gets home next week" sort of way.  Rating on the event-o-meter: 8.5

Now, if you'll excuse me, I hear Luke talking in his crib.

Thursday, July 19, 2012

Luke feels the same way....

 Look!!! Claire really can be a sweet little girl. She loves to sit and watch Luke and the doggies play. It looks like she has a tooth in this picture, but it is just spit :)
 She is even starting to like to be on her tummy now that her belly doesn't hurt as bad.
 She doesn't like when Luke gets too close though bcause it blocks her view.
 Maybe if I don't look at him, he'll get off the couch...
 Maybe if I push him, he'll leave me alone.....
 Not working. Must resort to tears. Do I have your attention yet?
 Oh jeez...does she ever shut up?
No, Luke. You can still hear her even if you cover your eyes. Nice try.

Friday, July 13, 2012

Grandma's visit

Guess why Luke is so happy in this picture? Well, other than the fact that he is ALWAYS happy....
 He's extra happy because Grandma was here!!!!!
 Every single night he got a bath, books, and lots of snuggles....
 Since Luke was occupied, the girls had a little bit of extra time to snuggle as well....
 Don't worry. Grandma got plenty of snuggle time with Claire while Luke was in school on some days...

 We even had to make sure that Claire was always wearing cute, matching clothes each day....
 The house was so peaceful and clean with all of Grandma's extra help that even Ralphie had extra time on his paws to sit and relax...
 Grandma helped us with all of Claire's poor belly problems that she has been dealing with for the past two months. We finally think we have her reflux medicine and formula adjusted just right....
 Even though Luke loves his snuggle time with Grandma, he doesn't get too jealous when it is Claire's turn...
 And look at what a big girl she is getting to be! She's four months old today!!!!

Top 4 things at 4 months:

1. She LOVES to snuggle. Nothing makes her happier than to be wrapped up in a blankie snuggled up next to someone.
2. Her magic paci (an oversized yellow one) really is her favorite!
3. When her tummy isn't hurting, Claire likes to just chillax by herself. Sometimes she nestles into her boppy, sometimes she snuggles in her swing, and at night she likes to sprawl out in her bed for about 30 minutes before she finally falls asleep.
4. She is getting to be very observant. One of her favorite things to do is to sit and watch Luke and the dogs. Sometimes she likes the occasional lick (from both the dogs or Luke), but usually she likes to watch from the safety of the rocking chair. Before we know it, she be crawling on the floor with everyone else.

Sunday, July 1, 2012

Luke's Progress


To qualify for speech and occupational therapy, Luke has to receive an annual evaluation to track his progress. This year he had to respond to social cues, say/sign the words he knows, stack blocks, and complete various other two-year-old appropriate tasks. The ONLY reason he qualifies for ANY services is simply because he has Down Syndrome as his medical diagnosis!!! Otherwise, he is doing so well that, despite being a little delayed in some areas, he wouldn't qualify for services. This is AMAZING news!!!! Patrick and I sat down with his case manager, occupational therapist, speech therapist, and lead teacher, and here's what they had to report:

- Luke is interacting great with his peers. He is very sociable and has lots of friends.

- After Ms. Diana (teacher) sings a song to signal the start of free play, Luke's favorite two activities are either the art center or instrument center.

- He loves to have dance parties!! (tell us something we don't know!) His favorite songs are "If You're Happy and You Know It" and "Old McDonald". He can even do all of the hand motions to about 5 songs.

- He signs about 15 words including: eat, more, drink, potty, swing, open/close, please, sleep, etc. We are even working on putting a few signs together. For example, "More drink", "please read"

- He says about 10 words (in Luke-speak) including: Momma, Daddy, ssss (for sister), ah-puh (airplane), dog, dce (dance), etc.

- Luke is walking all over the place with no problem. Our next goal is to perfect jumping and walking up and down stairs with less help.

- He's starting to identify animals and animal sounds. So far, we have dog, cow, and sheep mastered. The others are a little hit and miss.

We are so proud of how well he's doing, and we can't wait to see what he learns next!