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.

Thursday, June 19, 2014

Celebrations!

Paaaarrrrtttaaaayyyyyy!

It has been a fun-filled week of celebrations. Thanks to the Spurs NOT choking in the finals, Claire and Luke got to party in style waaaayyyy past bedtime. Why go to sleep when you can drive downtown with 5.5 kazillion other people, honk the horn, and yell out the window like a crazy person? Judging by her hair, Claire clearly had a wild time. Luke, on the other hand, was not a fan of the chaos, so he passed out while Claire practiced for her future partying days.


 The Spurs got the week off on the right foot. The celebration continued it was finally time to pick up Claire's new "legs"! Now, the average person might just call them "braces", but the truth of the matter is that she can not use her legs for weight-bearing without them - hence - "legs". As soon as we put them on she was instantly able to bear weight effectively for the first time. Don't get too excited over that - it was probably just the sheer weight that holds her legs down, but whatever, it is a step in the right direction.

Speaking of the right direction:  Guess who has a VERY happy nutritionist?!?! It's not about the number on the scale, but rather, it is about improvement. And improve she did! We are going to just keep chugging along with shoving food in her face. Luckily, we have new special juice boxes and some 'roids to make her grow. The doctor says it is just an "elemental supplement", but we know the truth. Watch for upcoming pics of her flexing her guns.

Let the celebration continue - tomorrow is Friday!

Sunday, June 15, 2014

Happy Father's Day!!

He puts up with a lot - getting his fingers bitten, dirty diapers, a sassy attitude at dinner, and an even further unpleasant attitude at 3:00 a.m. - and that is just from Claire! He rarely complains about our less than rational requests, meltdowns, and insane lifestyle. We wouldn't have it any other way. If it weren't for us, his life would be VERY boring. Besides, he would look pretty funny walking through Target with Ralphie in the Baby Bjorn.





Friday, June 13, 2014

Vacation: Lessons Learned

Top 10 Things Learned on Family Vacation

10. I am, perhaps, the world's best packer. No...seriously. Four people, six days, work meetings, and the fickle Colorado climate, and one suitcase. This is a feat that not many people can claim.



9. In other news, overweight baggage fees are Out.Of.Control. As in - to the tune of $100 for a talented packer such as myself. Never fear, just look pathetic with a double stroller, a disgruntled husband who does not appreciate my stellar skills, and the nice airline ladies scrounged up a box to save the day. Fees cut from $100 to a mere $25/bag/box.

8. Vacation of 2014 does not equal vacation of 2008. Rewind: In 2008 we grabbed two backpacks, jumped on an East-bound plane, and spent two weeks traipsing through Europe. Our diets consisted of wine, cheese, and gelato - in that particular order.  Fast forward to the past week:  A two-year-old and four-year-old and a husband on a work trip didn't equate to exactly the same spontaneity. I mean, the schedule did center on food - chicken nuggets, non-dairy snacks, and lots of water. We did splurge and buy some wine one night, but then Patrick was convinced the leftover (WHAT?!?) wouldn't make it between destinations. Probably right, but a failure all the same.

7. Vacation DOES NOT equal rest.

6. When booking future vacation rooms, ONLY book a room with two queen beds or one king and a pull-out couch, etc. Case in point: 

C: "Hehehehehehehehe....."
L: "Mama...owwwwww....mama....owwwwww"
M: "Claire, stop kicking your brother in the face."
C: "Hehehehehehehehehe....."
L: "Mickey??"

This exchange might have been funny except that it was 12:23 a.m., and I had to be up for work at 6:45 a.m. See lesson learned #7.

5. Follow-up:  While taking the entire family on a work trip might seem like a good idea, it probably isn't. Work trips were designed many moons ago by some very smart parents looking for a valid excuse to escape the responsibility of parenthood without having to explain the rationale for family desertion. It is a wonderful escape from the incidents such as those listed in lesson #6. If lesson #5 is applied, lesson #6 is a moot point.

4. Never underestimate the power of a fully loaded diaper bag. Hungry child....snacks. Spilled drink...wipes. Closed wine bottle....opener. Only in our bag.

3. The fully loaded bag mentioned in lesson #4 only poses a challenge when  attempting to make it through airport security. Refer back to Lesson #9 - the same pathetic looks, double stroller, and two adorable kids will melt even the toughest security checkpoint's hearts. Suddenly, we found ourselves breezing through TSA pre-check. Shoes on, computers in bag, two happy kiddoes, and even happier parents and security guards. Crisis averted. How did I ever do that myself on the way to Hawaii?!?!?!

2. Home is great after a vacation. Home is even better after a 2.5 hour delay due to maintenance issues. The luck of making it through TSA pre-check quickly wore off.

1. While my parents were out visiting, they observed that we rarely sit down. While vacation is great and we LOVED seeing our friends and family, being home is our favorite place. We happen to operate at hypersonic rates, but that's just us. We've been home for five hours, and the laundry is done, floors are washed, dogs are home from the kennel, and grocery shopping done. We can't wait for a quiet weekend to recover from our adventures, but first stop in the morning - Aquatica.