Welcome to Holland

When early intervention first came to see Quinn they left this great essay about having a child with a disability. It has really given us strength and helped us to keep things in perspective.

 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. 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."

source

"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.

The night watch by Rembrant

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.

Shaking things up

Our sleeping beauty shortly after discharge from the hospital.

It's been a while since we updated... sorry about that. It's easy to get in the day-to-day grind and let things slip.

We are still doing tube feedings ever 3 hours and are getting used to taking turns being up at night. It's almost like she's a newborn all over again.
Quinn is gaining weight like crazy! She's up to 13 lbs 4 oz. - that's about a 2 lb gain over 2 months. She's got little fat rolls on her arms and legs and her chubby cheeks are precious.

We're sure every parent thinks their baby is the cutest... but Quinn really is the cutest.

Our chubby cheeked chipmunk in her car seat, last week. 

Grandma T was here for a month and watched Quinn while we were at work and now Grandma H is watching her during the day. We are so grateful for these brave ladies who have really stepped up and helped us out. Heavenly Father sent us to such wonderful families and we are so blessed.

Quinn has always had a little tremor since birth, but it's been chalked up to a startle reflex. In the last week that's changed. She has had events where her arms extend and sometimes shake a little. This has progressed to arms and legs being extended and her head being tossed back. It's a very strange sight and has gotten a worse. It's been happening when she is in the swing, car seat or the bath, but is now at rest as well. We sent a video recording of it to our Dr. who sent it to her neurologist in Seattle.
These events are suspicious for what they call infantile spasms or west syndrome. We are going out to Seattle this week for an EEG and a consult to determine if these are infantile spasms. Hopefully we can determine if this is a serious problem. We are really looking to make her more comfortable, and these spasms are stressing both Quinn and us out. Lets all hope we can find a way to lessen their effect on her.

We have the best friends, family, ward and co-workers. Thank you all. We've had great meals, lots of kind emails and phone calls, and so much support.

 Thank you to both our work places who have been so understanding of us having to rearrange our work schedules and sometimes take time off at a moments notice.