Saturday, April 12, 2014



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.

Every now and then I think about this poem that I ran across a few years after my son Nicholas was born.  Nicholas is my special gift from God.  He is 19 years old now, and I could not be a more prouder mom.

I remember when he was first born and the doctor telling me soon afterwards that he had Down Syndrome.  I was a little shocked at first since I had not had any tests done during my pregnancy to prepare me, but I remember telling the doctor that it's ok.  And you know what, it is.  I do wish he was able to communicate and that his self help skills were more developed, but I learned to accept who he is a long time ago.  He is such a happy, loving person and shows his love through his smile and eyes.

Although Nick may not be able to do some things most other teens are doing such as driving a car or going off to college, I am proud that he has been able to do many other things.  I am glad that Nick has been able to attend one of our area high schools right along with his regular ed. peers.  He is always happy to go to school and loves his teachers and friends.  He still has a couple of more years left but time is flying by.  Soon he will be graduating right along with his friends. That is just mind-boggling to even think about.

One activity Nick especially enjoys is participating in his Challenger League baseball team.  He has been playing for 8 years with the same teams, and it has been a delight to watch them all grow up together.  They are always so proud of each other.  Whether it's cheering for a home run or helping to cheer someone up who is sad it just comes naturally for them to encourage and lift each other up. 

This weekend Nick went to his first prom. The Joy Prom is a full-scale prom for those with special needs who are 16 or older.  Nick had so much fun with his date and many of his friends who were also there.  Words can not describe how proud I was for him.

The poem suggests not spending your time mourning what you don't have but instead be grateful for what you do have.  I am grateful for Nicholas and for the special young man he has turned out to be.  I love you Nicholas!