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 23, 2015

Deployment Shenanigans



Rewind back to Thursday, December 4th  (3 Days pre-marathon and the end of 2014 blissful peace and quiet):  On my way home from one of Claire’s appointments, I called Patrick to tell him we were going out to dinner to celebrate a new project I had at work. His response, “Oh good! Now you have something to keep you busy while I’m deployed!”

-          Crickets    - 

I knew 2014 was too good to be true!! But, once again the AF gods took pity on our poor little souls and kept Patrick state-side in South Carolina. “That’s a deployment?!?” You may be asking yourself. Me too. God bless the Air Force. Regardless, at the end of the day it means I’m flying solo until June.

Let me preface this by saying that, “Yes, Patrick – you are correct – this really isn’t that bad.” This will be like any other less-than-stellar life experience – God helps you forget! Looking back on Patrick’s last deployment, I remember next to nothing. Perhaps this was because Claire was 5 months old and in the beginning stages of “I think I’ll hang out at the hospital” phase, Luke was 2 (enough said), and I had just started a new job. 2015 is a walk in the proverbial deployment park!!

In case you were wondering how we would choose to fill our time, staying busy highlights include:

-                       Poop-a-palooza 2015:  What better way to get ready for a deployment than to have Claire go through the never ending cycle of “Should I or should I not effectively go #2 on a regular basis?” Code for: Until the doctors could get Claire’s meds balanced correctly, her intestines became a bipolar monster of ceasing to work (ER visit) to spouting such a spectacular fireworks show that one monumental experience left remnants in both her hair and between her toes. No lie. The good news is that 2nd opinion doctor was much more effective at taming the ugly monster than our original doctor, and now Claire’s intestines no longer keep us awake for hours at a time each night and the fireworks shows have been cancelled for the foreseeable future. Darn.

-                      Therapist-school-paperwork-will-it-ever-end-marathon:  Running a physical marathon is a walk in the park compared to the ridiculous mound of paperwork a child produces when he/she turns three years old and “ages out” of the state-sponsored early intervention services and transitions to the local elementary school. This week, we have 14 appointments, and that is a welcome breather after the world-record 17 appointments from three weeks ago. Yes, co-workers, that is why you receive e-mails from me at the strangest times of day. It may seem odd to work at 4:45 a.m., but at least I can guarantee my work won’t get interrupted by a child, e-mail, or phone call!

-                        Wedding shenanigans:  If I could make it to Hawaii by myself with two baby midgets, surely I could make it to Kansas City with two toddler midgets, right? Fortunately, the gamble paid off, they were as good as gold, and we partied our buns off at one of the most beautiful, fun, and energetic weddings I have been to in a long time. The “baby brother” of one of the old neighborhood families was getting hitched, and the old gang from Doreen street reunited for the first time in a decade. It’s weird when your own kids are now older than the neighbor kids were when I started babysitting them. I feel old.

-                    The usual:  When we’re not out seeing the world (Kansas), then you can usually find us at our usual locations – The zoo, Sea World, or Target.  If you are ever unable to track us down, just ask Luke’s best friend at the Sea World gate, the train conductor at the zoo train (his cousin has DS), or the nice sample lady at Target where we are, and I’m positive that one of them can assist. The days just seem too long at home, so we rotate between our favorite locales, depending on the weather. If we REALLY want to spice up our lives, we might throw in shopping at La Cantera or going to the movie theater. PARTY. ANIMALS.

-                      Too fun to handle:  I know what you’re thinking – they have more fun than they can handle. Well, I forgot to mention the dishes (by hand due to broken dishwasher), laundry (it reproduces like bunnies while I sleep), cleaning (dogs and toddlers, oh my!), oh yeah, and I almost forgot to mention that full-time job that keeps me on my toes, yet offers a very strange sense of stability in my day.

-          You’re probably thinking that I need a hobby (or some tequila), and you’re probably right. 









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