Reflections

I was asked to participate in a survey about being the parent of a child with Down Syndrome and as I was writing my comments, I realized that maybe I haven’t shared this experience with many people…

Before Amy was born, my OB/GYN gave me the option for prenatal testing but I declined because I wasn't going to terminate the pregnancy. He told me that they could look for markers of Down Syndrome in the next ultrasound which I agreed to. No markers were found and everything looked normal.

Less than 24 hours after Amy was born, someone I did not know came in my hospital room and told me that my daughter has Trisomy 21. I did not know the doctor that delivered the diagnosis. He was the pediatrician on call at the hospital. He didn't have a very good bedside manner. He told me the diagnosis and then left and I was all alone to absorb it all....I didn't want to believe it. It was a total surprise. I was heart broken. My perfect little girl wasn’t quite perfect…. My dear friend, Tricia whom I have known for many years, is a parent advocate for children with special needs and she was the one I turned to. She gave me hope. Bryan was very encouraging when I told him the diagnosis. He simply said, "Aren't we blessed to be the parents of this precious little spirit." and then I knew we could do anything that would be required of us!

Before Amy was born, I had many preconceived ideas about what a child with Down Syndrome was like--the limitations and the challenges. My first hand experience has been much different. Amy is a delightful child and I enjoy each day with her. The absolute joy she experiences when she learns something new is exciting to me. I appreciate each milestone more than with my other children. I wouldn't trade this experience for anything!

Here's a story I love that expresses my feelings beautifully:

"Welcome to Holland"
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 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 have never 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, 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."