Friday, April 25, 2008

Introduction & Welcome

~ Welcome to Bridget's Light ~

If you've found us, you most likely know or love someone with Down syndrome. You might want to know more about life with Ds if you are pregnant and have a prenatal diagnosis (or are just suspecting). You may even be researching the diagnosis for a class. Whatever has brought you here--we're glad you stopped by.

We welcome readers into our lives with the hope of furthering understanding of Down syndrome, and helping others see how much Bridget has to offer, and all she brings to our lives.

A Ds diagnosis is far from the end of the world. We didn't anticipate having a child with Down syndrome, but have discovered that a path uncharted often offers unexpected rewards.
We are a happy family, living a happy life which happens to include Down syndrome. Our lives would not be the same without Bridget.

With that in mind...this page is meant to celebrate Bridget, and to share some of what we are learning from her. I will post pictures and thoughts on all aspects of Life with Bridget. When possible, I'll post writing from other members of our family. Since I will be doing most of the writing, here's some background on what's shaped my perspective...

I used to think being lucky meant always having good things happen. And, until early adulthood, my life fit that definition--it was free, for the most part, from death, divorce and tragedy. I was healthy and the people I loved were healthy. My support system was strong and in tact. I grew up happy, and loved, and confident. I met Chris the day I began college and we married four years later.

Things began to swing just before our wedding, as we watched Chris' father die from malignant melanoma at age 53. Our first child, Sara, was born prematurely (in 1995, when I was 25), had multiple malformations of her digestive tract, and underwent three major surgical procedures in her first 10 months of life. In 2004, at age 34, I was diagnosed with a large, life-threatening brain tumor. And then, in 2006, Bridget, our fifth child, was born prematurely, required surgery and was diagnosed with Down syndrome at birth.

●Chances of having a child with VATER Association (Sara): around 1 in 10,000.

●Chances of having an Acoustic Neuroma (me): 1 in 100,000.

●Chances of having a child with Down syndrome (Bridget)--even at my “advanced maternal age” of 36 at the time: about 1 or 2 in 100 (around 2%).

●Chances of having three, rare, non-hereditary and unrelated medical diagnoses in one family: very, very slim.

When Bridget was born early and with Down syndrome I joked, “I’m not playing the odds anymore!” But, I never felt like a victim. I know these things happen, and I know others have managed through much, much worse.

I love my life, and I wouldn’t change a thing—not even the difficult things. We all need chances to feel, to consider, to reflect, to prioritize and to act. Our biggest struggles sometimes provide us just this.

When I really started thinking about the odds, I realized that we are some of the luckiest unlucky people…

●Sara is now thirteen and thriving. We made it through a tough first year with her, and have not looked back.

●Even though my own situation once looked bleak, I survived and am thriving.

●Bridget is strong, healthy and able. She is the light of our lives and has taught us all so much. I can’t imagine Life without her.

My definition of luck has changed. Now, I know that if you think you're lucky, you are.

I still think I'm lucky. I am lucky to have had all these experiences, although some were not necessarily easy. I know that the good and the bad times are part of the journey. While recent years have brought some serious challenges, I am probably as happy and content with Life as I’ve ever been. Each journey--each relationship, each experience--adds grit, substance and understanding…and I am thankful for all of it, the good and the bad.

I believe that people are inherently good. I see it everywhere, in faces, in big and small gestures, and in people giving of themselves (personal support or corporate commitments).

I believe the universe is inherently friendly; that good things happen even in the worst of times; and that we make conscious choices to be hopeful, and to let love lead.

I have tremendous faith that, in the end, love always prevails.

Our family has been so deeply impacted by Bridget and the events of the past few years--in a really good way. Now, it's my job to spread the goodness :)...

1 comment:

  1. This is beautifully written. I love how you wrote you're the luckiest unlucky people in the world. Our life was "uneventful" until I turned 40. John Michael has written a new story for us and we're happy to turn each page slowly, at his own pace.