Saturday, October 8, 2011

Learning about 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 jusst a different place. It's slower-paced then Italy, less flashy then 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.

Emily Perl Kingsley

This is something I have shared before. The never, ever, ever, ever part... that always stings. Because even though I am enjoying and learning and growing from what Fiona's extra chromosome brought with it, it will never be the same as going to Italy.  Such a beautiful painting of what this journey feels like.

Some days, being in Holland is wonderful. The delays Fiona has from having Down syndrome at times feels like a blessing. I love how smushy and flexible she it. Her low muscle tone is to thank for that. Her size allows me to enjoy my last baby that much longer. And clothes? This girl really gets good use out of her cloths. We are still wearing a few 3-6 month outfits.

Newborn booties, 3-6 month pants, and a 3-6 month hoodie that fits everywhere except the sleeves are now 3 quarter sleeves verses long sleeves.
Some days, I am really sad we are not in Italy. Mostly when we are around other people who are there. When we are around other one year olds who are talking and walking and understanding what I say, it hurts. It hurts to see a 10 month old's mom encourage her child to be careful around "the baby", my 14 month old. Right now, she is little, so the issues are little. But the issue will grow as she continues to.

However, the last line of that poem is what is so important. 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, they very lovely things... about Holland. The pain will never be completely gone, but I won't let it consume me. There is way to much joy and goodness in my life to ever let it. No matter what God has planned for my daughter and our family, I know something good will come of it.


  1. I love Welcome to Holland & feel as if you just wrote everything I've felt :) Beautifully written! Can't wait to get our "little" ones together!

  2. I understand completely the hurt you feel when other mothers comment on the size, referring to your child as a baby. My daughter is four and a half, a mere 24 lbs still. It is now just plain annoying as well when other two year olds come up and say "hi baby" and the moms reinforce the baby thing. I have taught Kristen to say "I am four" to that. It turns me! It is still that constant reminder to you that your child has that extra chromosome...BUT it does get easier and you will find your own way to handle it! I promise....


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