A friend of mine who has a brother with disabilities commented on my first post regarding mothers with special needs kids by saying, "I have spent many nights as a teenager crying myself to sleep because I was mourning that my little brother would would not be able to have the life I had dreamed of for him." She hit on a fundamental issue of having a loved one who is disabled-mourning the loss of their opportunity for a normal life. When Nathan was born, we were so caught up in believing that God would heal him any day and trying to learn to take care of him, that it was months before this period of mourning set in in my life. No one explained to me for a long time that when you expect and plan for a healthy baby, and your baby is born with disabilities, you mourn the loss of the healthy baby you anticipated and planned for, just as if you had lost a child to death. A wonderful nurse who cared for Nathan right after he was born sent me a card, and in it she included an essay that changed my life and allowed me to finally stop and mourn my loss, so that I could move on to healing. It is entitled, "Welcome to Holland," and was written by Emily Perl Kingsly. It reads:
"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."
I still cry every time I read this, because it so perfectly describes the emotions of having a child with disabilites. During our eleven years I have indeed learned to love the tulips, windmills and Rembrants of Holland. And I have now been blessed to live in both "Holland" and "Italy," since the birth of our healthy daughter, Carissa. I have finally been able to experience for myself that both destinations have their pluses and minuses. But I wouldn't trade my time in either place for anything in the world!
4 comments:
That is a great piece! So true, and really clearly stating what goes on in the heart of the families of the handicapped.
We did not ask God to heal my brother. I don't really know why, maybe because his disorder was chromosomal and because we were in a church that was salvation-oriented and not healing-oriented. I can imagine that would have been a heart wrenching thing ask God for your child's healing and only to have it denied.
I also think that the essay you liked to was a great one.
I will think of this post when my tulips come up in the spring! and I will appreciate their beauty ;-)
THAT was beautiful!!! I do not totally 'get it' because I've never been down your road, but this helps me to appreciate a lovely aspect of your life. Thank you!
{{hugs}}
Hello, my name is Andrea. We have a child that has been diagnosed with CMS just recently. Would love to chat with you...as I'm delving into the unknown. It's so rare and hard to find other parents. Hope to hear from you,
andreas7@cebridge.net
In Him,
Andrea
I am so glad I happened upon your site. I was google-ing the holland/italy story for someone else (because I love it) and found you. I have a special needs baby (trisomy 1), he's almost 10 years old. They said he wouldn't live past 3 months! Ha, silly doctors!
I LOVE THAT STORY!
Just thought I'd share.
Have you ever read Erma Bombeck's story of how mothers of handicapped children are picked? Google that one - you'll love it just as much!
Post a Comment