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."
"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.
My friend didn’t know her child would have special needs at birth as this story communicates. Sort of like us, the complications came on later. Her family was thrust into Holland. After she heard this story, tulips became very special to her. She redecorated her bathroom in tulips. Her husband went out and bought tulips every year to plant outside the house. Her son is 16 now. She told me that in one of the recent years, her husband went to buy tulips and she said, “You know, let’s not get the tulips this year because I think now, I’m in Italy!” She had learned that even though she had not expected it, it’s where she wanted to be. The journey was beautiful, life-changing, yes, but beautiful none the less. She has not let bitterness shape her but has let the Lord teach her through all the testing, trying times. She is a truly encouraging friend.
Philip has healed well from the surgery, despite some infection around his abdominal incision which cleared up quickly with antibiotics. He has resumed his roller coaster. We’re currently in a dip in the roller coaster but tomorrow could be better. Yesterday evening, he was having so many seizures we decided to give him his rescue med at bedtime to help things calm down. They are still the small, one second seizures but there are just so many.
I think I’ve said this before, but it’s so hard when you see him daily to assess his development. We are looking at the small things because that’s all there is to see right now. If I try to think about the big picture, I would say he is very slowly regressing. There are however a few bright spots: For months, he didn’t give high fives and within the last month, he has given people high five around four or five times. People besides mommy, that is. That’s a small progress. Most everything is still affected by whether he’s on the hill of the roller coaster or in a dip. He can do several things on a good day that he just can’t make happen on a bad day.
He gets all his new equipment on Monday. We’re very excited! I’m pretty sure he doesn’t care very much but I think he’ll like the bath seat once he gets to try it. He doesn’t have to be down in the water. His car seat and new stroller are also very exciting additions.
Someone recently saw that my son was still on the prayer list at church and asked, “What should I pray for?” I said to her, “Basically, we need the seizures to stop.” For better health for Philip, we need the seizures to stop. That may not be what God wants though. So, in that case, we pray for God’s will to be done and His purpose to be accomplished. I think it's completely appropriate to pray for both.
Ethan just took his first steps and Joyanna is potty training and Philip’s still on the diet so that may explain why a post doesn’t show up for a while.
This is the song I’ve been singing lately:
I cast all my cares upon You.
I lay all of my burdens down at Your feet,
And anytime I don’t know what to do,
I will cast all my cares upon You.