Nicole Suzanne

I don't talk about this much, but it's something I think about every year on this day and today I thought I would share.

19 years ago today in 1992 Rominal and I had a baby.

Nicole Susanne was her name. She was named Nicole because we liked the name, and Susanne was for my mother.

We knew something was not quite right when I was around six months pregnant. I was measuring way too big for only being 6 months along.

We had a high-level sonogram done and it revealed that her stomach was enlarged. This meant that she wasn't processing the amniotic fluid properly, therefore I was carrying twice the amount of fluid that you should.

This was also a sign of down syndrome, which was confirmed once we had an amniocentesis.

We met with a local down syndrome group and prepared, as best as one can, to raise a daughter with special needs. We met the most wonderful family and a special little boy who had down syndrome. We felt we were ready for this added challenge and we anxiously awaited her arrival.

After a 2 1/2 month struggle with premature labor, she was born via emergency c-section.

Because of the extra fluid I was carrying, she had been able to twist and turn a lot when I was pregnant with her. The umbilical cord was all twisted up like a phone cord and she had a lack of oxygen throughout my pregnancy.

We kept her on life support until it was clear that she had no brain functioning and would not survive.

She passed away on January 30.

While this was an event in my life that shook me to the core, each year that passes becomes easier. Rominal or I will say to the other, "do you know what tomorrow is?" and then we do the math to figure out how old she would be this year.

As tough as that time was, I still would go through it rather than not. I'm not saying I don't wish Nicole didn't survive, because I do. I'm just saying that I prefer to look at the bright side of life (are you singing the Monty Python song now too?). This probably helped strengthen our marriage, and probably has made me a better mother to Bailey than I might have been had I not lost a child.

This poem appeared in a Dear Abby article sometime after Nicole was born and I cut it out and saved it. I still have it to this day and it still means a lot to me. Even though we never got to experience Holland, in our own way, we experienced a completely different place.

I'll share it with you now.

WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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.