New Diagnosis
Parents often find it is really hard to put into words what they feel at the time of a new diagnosis. A new diagnosis can occur at birth, or go undetected for a while. A new diagnosis can occur when trauma occurs. Despite the different times of when a parent receives a new diagnosis, we all have one thing in common, this is not what we had planned for our child or ourselves. Some of us are probably experiencing a host of emotions at this point. Many of us remember feeling alone, helpless, scared, shocked, in disbelief, angry, anxious, depressed, confused or guilty. First, let us share with you that none of these emotions are wrong or abnormal. It is quite common to feel many different emotions. It's helpful to most parents to find someone they feel they can share these emotions. Many parents find someone who understands all of these vast feelings of emotions through parent-to-parent support. It is true that no one quite understands how you truly feel. However, there are others who have been to the place you find your self and can help guide you through as you begin your unexpected journey.
Life may feel a little uncertain, but be encouraged that you will find hope, love and joy in this new journey ahead. Emily Perl Kingsley, wrote a poem that describes her journey, a journey that many parents relate to as they reflect on the beginning.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability to try to help people understand it, to imagine how it would feel. Its like this…
When you are going to have a baby, its like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its 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 land 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. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
Its just a different place. Its slower-paced than Italy, less flashy than Italy. But, after you've been there for a while 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, thats 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
When you heard the diagnosis, some things changed at that very moment, but there are some things that are unchanged that are important to hold onto. This child is still your child. She/he is precious. She/he needs you. If you would like to talk to a parent, we would be glad to connect you. Remember that you are not alone. A similar road has been traveled or perhaps is just beginning for others like you. There is hope for the future.
