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, February 26, 2017
Tornadoes, vomit, tooth fairy, shamu, and balance: Things that terrified us this week
Sunday: Holy hell. When the storm hit around 10:45 last Sunday, I jolted awake. As the rain and hail pounded against the windows, the only thing I could think was, "What do I do if these windows shatter?" I slipped out of bed and tiptoed across the living room about 10 times trying to decide if I should go upstairs and get the kids. I glanced at my phone to see how much of the storm was left, and I saw a tornado warning for Bexar and Comal counties.
Crap.
I ran to the tv, turned it on, and instantly I heard, "If you live in north San Antonio along 281 near Timberwood Park, Bulverde, Stone Oak - take shelter immediately. There is rotation. You are in the direct path of the storm." I flew upstairs, gathered 60 lbs of sleeping humans, bolted downstairs, and tossed Luke and Aubrey into my closet. Claire, the child who normally wakes up if you blink too loudly, was still completely passed out in my bed. I sat there next to her straining my ears to listen for a change in the wind and the windows to come shattering in. Of course things never got worse, and that pesky weatherman scared me for no good reason. The tornadoes stayed south, and everyone went back to bed...except me and Ralphie - we sat on the couch shaking for another hour because he is petrified of storms, and my adrenaline was surging through my veins.
Monday: The only thing worse than the stomach bug is getting the stomach bug while Patrick is away. Claire was sleeping next to me, and I came out of a deep sleep to the dreaded sound of her getting ready to blow chucks. I lunged out of bed and carried her to the glorious tile floor that is MUCH easier to clean at 1:00 am than blankets and sheets. As I sat there holding her head over a bucket, I just kept thinking, "Please don't have the flu...please don't have the flu...I'm not ready for that!". She went back to bed, and I laid there for an hour trying to decide if my stomach hurt or if I was paranoid of the impending doom of the stomach bug hitting all of us with no other adult assistance. It was wasted energy - I was fine...Claire was fine - it was just her GI issues acting up. Crisis averted.
Tuesday: Luke loves the idea of Santa or the tooth fairy....unless they are coming withing five feet of him. He lost his second tooth, and apparently, since the first visit from the tooth fairy was when we were in a hotel over Christmas, he had not considered that she had to actually sneak into his room since we were home for this one. Oh HELL NO!!!! That tooth fairy was not coming in his room. We compromised and put the tooth across the room, and he eventually stopped crying and yelling for the tooth fairy to stay away.
Saturday: Let's continue Luke's irrational fear of non-humans. The logistical hurdle of this deployment is, "Could I successfully take the kids to Sea World with no other adult assistance?" The answer is "YES!!!". It was a beautiful spring day - perfect for opening day at Sea World. The crowds weren't bad, the baggie of chicken nuggets that I smuggled in kept everyone happy, and there wasn't a tear shed until....
Much to my surprise, Luke was ecstatic when I saw "Shamu" walking though the park taking pictures. I asked Luke if he wanted to take a picture, and he ran over to the line without hesitation. After I handed my phone to the family behind us and stood next to Shamu, Luke was struggling to break free of my grip, tripped over his own two feet, fell over, and started crawling away from the photo op. Dude - the picture was your idea. Everyone in line had a good laugh, I just stood there staring at him, and some very nice employee coaxed him to my other side for the picture. Noted: no tooth fair or person in whale costume for Luke.
Sunday: Aubrey pulled herself up to stand at the coffee table. Nothing at this house is safe. This development might be the scariest event of the week. She was eyeing the stairs, but I think we're safe from that for another few weeks....I don't think our hearts can take much more this week.

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