I always remind myself before seeing a new patient in genetics clinic that at least one of the parents have gone through lots of steps to finally make it to the genetics appointment to see us. The parent has already been through the five steps of grief: denial, anger, bargaining, depression and acceptance. If they have not accepted that the child has a problem, they would not have made it to their appointment.
Everyone is excited and proud of his or her newborn. They have big dreams – walking, talking, going to KG, graduating from high school, college, first job, getting married and having grandchildren. When the parent is first told that their child might have a genetic condition or simply developmental delay, parents naturally will want to deny it since all their dreams are suddenly shattered. Hence, parents might never make it to genetics or they will refuse testing to find a diagnosis.
How can I blame them for missing their appointment several years ago or not seeking help sooner?
- As I hear the child's story from the parent, I often want to hug and comfort them and say you are doing a great job. We just need to work together to make sure the child grows up to reach his or her maximum God given potential. For now, I am going to leave you with one of my favorite poems by a parent that beautifully shares her journey.
WELCOME TO HOLLAND
c1987 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.
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