An evening in Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

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.

c1987 by Emily Perl Kingsley. All rights reserved


I read this last night as I was going through some papers and it really hit me.  In our case it feels as if we were told that our vacation had been cancelled and that we better go on in to work...and THEN we found out we were going to Holland!  I'm just so overjoyed to be in Holland! Our particular version of it has lots of machines, home health nurses, specialists, and therapists...but oh my goodness the joy is just almost unbearable.   I would not trade a moment of our journey so far because it has taught me so much and brought with it great blessings, friendships, learning experiences, faith, and that almost unbearable joy.

So, the day went well.  We spent a good part of the morning starting to get the house ready and left the rest of it to my mom and sister.  They did a phenomenal job.  Penny thinks so too.  Lydia also had a big morning. She decided today was a good day to "scoot" in a crawlish format and to pull up to a standing position in her bed.  Now we'll always remember when it was.  Because it's Colombus Day (and coincidentally the day our family was reunited)!!!  As a reward, Lydia got to spend the day with her Aunt Sara so that we could focus on getting Penelope settled.  This paragraph represents lots and lots of gratitude for all of the wonderful family and friends who have made this trip to Holland so wonderful.

Now on to the paragraphs about our gratitude to the new friends we've made who happen to work at Lebonhuer Children's Hospital.  I mean what kind of place do people come in on their day off just to see your child one more time?!  Seriously!  I could write for days and days about how much we love LB and those who make it wonderful, but hopefully we will be able to show our gratitude in the ways that we plan to give back in the hopefully not so distant future.


Ok, it's time to talk about Penny!  She did so well today I could just bust!  She's been smiling and giggling all day!  She didn't get freaked out at the car ride or at being at home.  She seemed to really relax and enjoy her time in her bed!  We caught her talking to her own reflection in the mirror...wish we'd caught that on video!  It was so funny!  The two nurses that we've had so far have been wonderful and seem very very qualified, kind, and truly seem to love working with vent babies.  I plan to rest well just as soon as I finish this blog. 

In fact, most of you won't even read this part because you're too excited to see the pictures.  I bet half of you who are actually reading this skipped ahead and looked at the pictures and videos and then came back to see if there was anything important in the boring typed part! Haha! Caught you!  I do it too, no shame there!  Alright, I'm done now.  Must rest so that I can fully enjoy my day with my girls tomorrow.

Sadly it won't be a day with our whole family because Jonathan has to leave very early to start a month long tour.  Please pray for safety for him as he travels and for peace for his heart.  We will all miss eachother dearly.  But at least we had one afternoon together!  Ok, picture time!

Our fearless organizers and baby watchers!

Morgan came in on her day off just to say goodbye to Penny.  She's awesome 

(see Penny thinks so too)

"Hey I'm sitting by myself! I'm as awesome as Miss Morgan!" -P

the Penelope Chu fanclub meeting

Nurse Practitioner Leah and a very excited Penny 

today's board....we met our goal!!

heading out...and happy about it!

the cute parade

the grand marshall of the cute parade

Penny's personal Pediflite team (we wore our Pediflite shirts on purpose....we're dorks)

at this point I think Penny was wishing she had the real Pediflite team

we were both pretty pumped

"we're a bus"

"I can't bear to look at you Ms Gena...it makes me sad to leave you!" -P

"I miss Ms Gena already" -P

all of P's shenanigans 

"haha, she said shenanigans" -P

And accidental partial family portrait

"tickle fiiiiiight"

an intentional complete family portrait (yes in matching pink outfits....sue me)

the cutest picture ever in history

"Hey Penny smell my pits!" -L

"awwwwkwaaaard" -L and P

"haha...she's stinky" -P

"she's so immature" -L