Splendid Mayhem: Sleepless Night

Welcome To Holland

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.

Wednesday, February 18, 2009

Sleepless Night

Right after I hit post last night, things went WAY down hill! Parker woke up with a cough that got REALLY bad. We did the steam room thing and breathing treatments. Luckily, my Step-Dad is a respiratory therapists- and he was working last night. So, I paged him- he was able to listen to Parker and have the input of some co-workers. We did Xopenex once an hour, Tylenol Cough, Humidifier, steam/cold bursts- I think that was it. It was rough. We opted not to go to the ER b/c the only thing different they would have done was an IV steriod.
I took him to the Dr today- he's got Croup w/ Strider. We added a steriod and will keep up the Pulmicort (2x a day) and Xopenex (every 4 hours).
His eczema is also looking yucky on his face, so we got a steriod cream to apply 2x a day.
Little dude's going to be so hyped up on Steriods.

* Logen's Keppra was increased Tuesday as his seizures have increased. We didn't see any today. Yay :)

2 comments:

BarbaraFebruary 19, 2009 at 1:16 PM
What a night! I hope he's feeling better soon and the no-biting things keeps up. Yay for no seizures for Logan!
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KieraFebruary 19, 2009 at 9:15 PM
Oh boy Jess! That is a rough night. I hope that today is better. It is good news that there is no biting!

I am so glad to hear that there have not been any seizures!
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