Thursday, October 11, 2012

Day 11

Earlier this week Tera's EI coordinator emailed me to ask me if I would be willing to be a parent match for one of her new cases.  It's a family that has a new baby that was diagnosed with DS and they're just starting the EI process and she wondered if I might be willing to talk with the mom and share my story with her.  I immediately said yes; how could I not?

The majority of parents of kids with DS fall into two categories: those who have a prenatal diagnosis and those who have a birth diagnosis.  I don't know that either one is better than the other, believe me I've thought about it extensively.  I have said before that in our situation I really do believe the birth diagnosis was best for us. I'm not a person to just wait and see what happens and I would have been researching and reading non-stop and imagining all the possible worst case scenarios.  This way was I was able to go through my pregnancy with no more worries than the average person might experience and more importantly, I was able to stay calm for the sake of my unborn child.  Stress is not my friend and has caused more problems in me than I can list.  I can't imagine what kind of distress I could have caused Tera if I had known while pregnant.

Of course finding out within an hour of what is supposed to be one of the happiest moments of your life that your entire life and what you imagined that life to be has been turned upside down, isn't something I would wish on anybody either.

But what I've learned through all my reading and researching is that each situation is unique.  Everybody feels and experiences something a little different.  There are lots of moms that are thrown into a type of post-partum depression and spend the first year or more not being able to accept the situation.  There are some moms that have a hard time bonding with their child because he/she is not who they thought they would be.  There are some that make huge life changes to help deal with and accommodate their new life.  And there are some moms who decide they just aren't the best person to raise their child and they give him/her up.  And then there are those who cry, mourn, get angry, and sad, but then realize this what life handed them and they move on.  Is any one of these scenarios any better or worse than the others? Not at all.  It is a very traumatic thing to have happen and there is no manual on to correctly deal with it.  You make your decisions and you try and live with them.  I'm sure at the beginning there were some people that thought we hadn't really accepted Tera's diagnosis as easily as we seemed to, but I can tell you that while we did accept it, it was NOT easy.  Not at the beginning anyway. I have cried a lot in the past year and a half; some angry tears, some frustrated tears, some sad tears, and some happy tears.

I've read many times that when new parents mourn their child with DS, it's not because they're necessarily mourning the fact that they have it, they're mourning the child they thought they would be having and there is a difference.  If you know someone or meet someone whose baby has DS, don't pity them, congratulate them on their new miracle.  Don't be sad for them for they will experience so many moments of pure bliss along with the way.  I'm including a short story that I loved when I first heard it, was somewhat irritated with a few months in, but now realize that it is just one perspective and can appreciate it for how beautiful the sentiment is.

Longtime Sesame Street writer Emily Perl Kingsley has been advocating for people with disabilities since 1974, when her son, Jason (co-author of Count Us In: Growing Up With Down Syndrome), was born with Down syndrome. In 1987, she wrote Welcome To Holland, which has remained a source of comfort and inspiration ever since.  

Welcome to Holland


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 guidebooks and make 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 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 never would have
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 Holland has windmills...and Holland has tulips. Holland even has
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 go to Italy, you
may never be free to enjoy the very special, the very lovely things...about Holland.

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