Congratulations on the birth, or upcoming birth, of your child. 

You may have found out your child has Down syndrome prenatally, when they were born, or it may have been undiagnosed for a while.  You may have been inundated with information when you received the diagnosis, or you may have been given little, to no, guidance.

Regardless of when or how you found out, or the amount of information you have, this diagnosis can be frightening, confusing, and overwhelming.  After all, this is probably not what you had planned when you thought of your baby or your family.

When we received the diagnosis that our child had Down syndrome, many of us may have felt sad, angry, helpless, depressed, confused, anxious, disbelief, isolated, or even guilty.  These are all normal and valid feelings, but they did not cancel out the love we still had for our child.  You may feel several of these emotions at once, and it may take you days, or even weeks, to work through these emotions and regain your emotional balance. 

You may be feeling a vast array of frightening and confusing emotions; after all, this is a life changing event.  However, please know that although your journey as a parent will have challenges, it will also be filled with hope, joy, love, and a different outlook on life. 

Your life changed with the diagnosis that your child has Down syndrome, and nothing will be able to take you back to how your life was before the diagnosis.  However, this is still your child, the same one you loved before you found out they had Down syndrome.  Your child is still going to need your love, support, and guidance. 

While no one can understand exactly how you feel, many of us have been in the position you are now and are willing to listen to you.  Hopefully the support you can receive from our organization, and through your friends and family, will provide you with guidance and support on your journey as a parent of a child with Down syndrome.

If you are in the CSRA and did not receive a welcome packet from the hospital, please let us know so we can arrange for you to receive this  

In 1974 Emily Perl Kingsley, a writer for Sesame Street, had a son, Jason, born with Down syndrome.  Ms Kingsley wrote an essay in 1987 that described her journey as the parent of a child with special needs.  

Since then many organizations have passed the words of wisdom in “Welcome to Holland” to new parents.  We hope you will come to embrace all the joy you can find in “Holland”, and know we are here to offer support during your journey.

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 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.