Sunday, October 2, 2016

Accepting the Diagnosis, and Going to Holland

Many people ask if we knew that Mildred would have Down syndrome before we had her. I guess the answer to that is: Yes and No and No. You can read about our first ultrasound indicator here, and about our genetic counseling and high-risk ultrasound experience here and here. Yes, we knew it was a possibility. No, we did not do the amniocentesis to confirm/deny a diagnosis. No, there were no concrete indicators on the high risk ultrasound, and the OB told us we had a healthy baby (more on that in another post). 

Here's the raw, vulnerable, (ugly) truth:
I didn't think my baby had Down syndrome. There was no part of me that expected a diagnosis.
I was being honest in my post when I said that we would be blessed beyond measure to have a baby with Down syndrome like my nephew, Timothy. I genuinely believed that! However I also genuinely believed (though I'm not sure I admitted it out loud to anyone), that it was statistically improbable to have two children with Down Syndrome within the same extended family. And I think part of our humanity (or maybe just my own sinfulness), began to operate on this "it's great for you, but it isn't going to happen to me" mentality. On the one hand, I loved every aspect of my nephew, and believed in his capability and was not disappointed in his diagnosis in the least, but on the other hand, I wanted MY baby to be perfect. That's the ugly. That is the part that I could just pretend that I never felt, and act like I'm the perfect Mama who never faltered in acceptance, but that isn't reality and I don't think it does anyone any good to pretend like everything is roses. It just wasn't what I had planned for my life, or for my child's life. 

That isn't the end of the story though, and I want to make sure any moms or dads who are facing a diagnosis and feeling this way know that. It doesn't stop here, with disappointment, confusion, fear, whatever it is you are feeling. It's not worse, just different. This poem, which is a popular one that circulates in the DS community, articulates the experience beautifully.


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 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 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 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 go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
***
©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.




So you see,
It turns out... Holland is pretty great, and I wouldn't trade my Tour Guide for anything. :)

Feel free to send/comment any questions you may have, or things you are curious about and I'll try to address them this month!







3 comments:

  1. It's even a challenge for your friends to not ask. "How do you feel about not going to Italy or what's Holland really like?" Your messages are creating an awareness and helping us to get over our hesitation to hold a Tulip! Thanks for your honesty.

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    1. Thank you for your comment. And I think there's something beautiful about being asked by a friend (or well-intentioned stranger) about what it is like - how would we know if we didn't ask? And part of being/feeling loved is being/feeling understood. I hope that's exactly what I can help accomplish through these posts - to help someone "get over their hesitation to hold a Tulip," as you said.

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  2. I don't see anything ugly about your wishes, hopes and dreams. They are normal and the same that every parent has for their unborn child. The fact that you have embraced so wholeheartedly the trip to Holland shows that you and Alex are the flexible parents who embrace change and the unexpected sometimes asked by God. You will probably take the trip to Italy the next time and I'm sure Holland will enjoy it! :-)

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