Madison Ashley Casselli

I could tell you many things about myself, few of these have any great significance. I have decided to focus on one aspect of my life. I will tell you about my most precious gift...

On February 11, 1999 my niece Madison Ashley Casselli was born. My sister, Lyn, was in Texas and started having contractions two weeks before the expected date. So my mother and I had no choice but to keep track of her progress by phone.

My sister had all the necessary prenatal tests run. The tests came back saying the mom and baby were in perfect health. Lyn and her husband chose to have the sex of the child remain a secret.

As Lyn's labor progressed into the early morning both Mom and I went to sleep, expecting a call when the baby had been born.

Around 7:30 a.m. Lyn called to say the baby was a girl. But there were problems. Madison was born with Down Syndrome and had some serious heart defects.

After two open heart surgeries, I can tell you that Madison is a healthy and wonderful child. She makes our whole family smile as we watch her grow and learn. The surgeries and likely some mild mental retardation has slowed her development. She is now between the crawling and walking stages. Everything she picks up goes into her mouth. She can talk a little. The words she uses the most are "Mom," "bath," and "I love."

October is National Down Syndrome Awareness Month. I came across an essay written by Emily Perl Kingsley, a mother whose child had Down Syndrome. I would like to share it with you.

by 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 the 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. Michelangelo's "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 flight attendant comes 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 guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.

Its 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."

And the pain of that will never, ever, 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.