A wise mother gave me this poem a couple weeks ago when I was feeling down. Mike and I had been – as we often are – struggling with Noah’s seizures and his delays, and we were heartbroken all over again. It comes in waves. For those of you who won’t ever really know what it’s like to be in our shoes (thank God!), despite your wonderful empathy and support, I thought this might help you understand.
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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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. 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, 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.”
The pain of that will never, ever, go away, because the loss of that dream is a 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.
Written by Emily Perl Kingsley
That made me smile!!
My sister is a Down’s Syndrome baby and we always had to look out for her – however, last week my mom went away for 8 days with friends. I stayed with her for a few days and my brother stayed the other days. The first day my brother asked me to stay at his house to watch his other two children while they took their daughter to a softball game – she clearly informed me “I held her hostage, I am a woman and I can do what I want” So don’t worry for Noah he will be independent and strong just look at his parents. We believe she is like that because we wouldn’t leave her alone when she was young!! She also makes us laugh!! Don’t give up the fight that is why God gave him to you to care for!! He is your fighting soldier for always!
Wow! What a way to look at the situation. Made me really stop and think! Noah continues to be in my thoughts and prayers. Best of everything to you guys!
A well written and unique perspective. Your family continues to be in our thoughts and prayers. Noah’s been enlisted in a war that he never should have had to fight. Despite it all, he will persevere. You all will. Fight the good fight little family. There are a lot of people behind you!
Erin Bond
COS, Colorado
That’s an amazing way of thinking about it. Its a thought concept that could be used in many different life situations but is particularly true about yours…