Thursday, September 24, 2009

Bridget's Light

I've thought a lot recently about how best to explain and describe the impact Bridget has had on our lives. And then I realized I'd already written it. This is the essay I wrote, exactly as it appears in Gifts 2. This says it all...

Bridget’s Light

When our oldest two children were very small, we bought and renovated a traditional saltbox-style home to accommodate our growing family. The house sat on a gorgeous, deeply wooded lot which included a pleasing assortment of redbud, oak and buckeye trees. It took us a little while to figure out that while the house itself was perfect for us, the heavily treed lot, which initially attracted us to the property, meant that there were no visible sunsets and dark rooms even on the brightest of days.

When we designed our current home, I wanted windows in every room. “Light is vital,” I said to our architect as he drew up plans. “I don’t want to have to use lamps during the day any more.” He took the challenge seriously, as each and every contractor we met during the building process asked the same bewildered question: “You have how many windows?” It might’ve seemed excessive to some, but not to us. We’d lived in "the dark house" for several years before we fully recognized how much we crave and need natural light. It was several more years still before we realized that light itself would become a central theme in our lives.

As soon as we moved in to “the bright house,” everything seemed lighter in all senses of the word. Our four children (all under age six) were growing and thriving. We felt a new sense of buoyancy, a lightheartedness, and an unrestricted energy in our household. But as it turns out, the same windows that let light into a home can also let the darkness inside. Shortly after we moved, just as our lives were in full swing, I was diagnosed with a life-threatening brain tumor. Our world seemed to stop spinning, and dusk set in. It was an overwhelming, scary and sad time, and I secretly wondered whether night was closer than I cared to imagine.

The surgery to remove the tumor took my hearing on one side, but there were no other complications. I not only recovered quickly, but became pregnant with our fifth child just over a year later. We were thrilled and easily slipped back into a happy existence. Yet we were soon once again reminded that while windows provide openings to the outside world, they also let the outside world

When Bridget was born with Down syndrome, none of us knew what to think, or how to feel. We had no experience with Down syndrome. We only knew the stereotypes, which brought sadness and concern. We grieved the loss of the happy time it should have been, and the loss of the baby we thought we were going to meet. But when we saw Bridget in the NICU for the first time, Chris and I both felt the heaviness and uncertainty begin to fade. We’d come around the corner from the nurses’ station to see her laying on a tiny hospital bed, covered in strong, unforgiving light from the warming lamps above. The lighting reminded me of a museum display featuring a rare and valuable piece of jewelry. As Bridget lay beneath it, nearly naked and fully illuminated, our hearts and lives were also laid bare. The light forced us to look at her, at ourselves, and our future. We watched her sleep peacefully, deserving and needing to be loved—just as any other baby. In that moment we realized Bridget is whole. We began to see her not as a child with a disability, but as a person, who would grow to express her own interests, talents, hopes and dreams—just as any other person. We began to understand her potential.

When the warming lights were turned off, there was still a glow that surrounded Bridget. She was radiant. It was unexpected, and we were both moved to tears when we realized that
she was the light.

The little girl with wispy ponytails who plays by my feet today does not yet know that I am writing about her. I’ve spent many hours these past few years telling our story, trying to show others that Down syndrome is not something to fear.

Down syndrome does not define Bridget. It is a part of her genetic make-up that is distinctly hers, but it is not her—and it doesn’t even begin to explain who she is. Bridget is a little masterpiece, with texture and depth and richness to spare. She gives freely of her effort and love. She is spirited and vibrant, content without being complacent. Others may feel that she has much to overcome, but Bridget doesn't seem to see it that way. In her we see honesty, lack of pretense, and uninhibited determination as she goes about her life with vigor and jubilance.

It’s interesting how a small amount of extra genetic material in Bridget translates into so much extra in all of our lives. Every day she encourages us to accept our own unique timelines for growth, and reminds us that what matters most isn’t what we achieve and when, but how true to ourselves we remain through the process of becoming. We’ve learned to accept that life is not always neat and tidy (or easy), and that plans can change mid-flight. We’ve also learned that situations we didn’t ask for or want often provide something we need.

A world turned upside-down reveals much about our perspective—it forces us to evaluate ourselves, the assumptions we make about one another, and our beliefs about ideals like success, beauty and perfection. And while Bridget has taught us significant life lessons, it is the small moments in everyday living with her—the countless little bursts—that fill our lives with meaning and joy. We spend our days together reflecting and accepting, learning, laughing, and loving. As a family, we’ve realized that we are not uncomfortable with disability; that we are not afraid of the darkness; and that everything seems better with more windows—and with Bridget in our lives. She has restored our sense of buoyancy.

Since our current home has natural light in abundance, it’s easy to forget that we once lived in a house with very little light. Likewise, it’s difficult to remember life before Bridget. What began with the bright light above her hospital bed and continued as her inner radiance has now developed into a substantial force of its own. Sometimes Bridget’s light is a high beam that illuminates clearly and at great range; at other times, it’s a gentle glow. But it is constant. With Bridget in our lives, our many-windowed home is luminous and vibrant once again. And even after night falls, sparkles are everywhere, filling every room and glittering with tiny flashes of light.



  1. Amazing! It gave me chills to read your story. I think it's says everything we all feel as moms of children with special needs. I am so glad this story is in Gifts so that hopefully new parents all around the world will be able to read this story and feel the hope and happiness that truly awaits their family.

  2. What a beautiful way to express the changes that have come over you and your family. And you are right, Down syndrome is not something to fear and there are some very amazing things about people with extra chromosomes.

  3. That was really beautiful, Lisa. So amazing how you tied it all together like that...Ah, You have such a talent for writing...
    Thanks so much for sharing this - I have yet to get Gifts 2, so I hadn't seen this yet.

  4. So generous of you to share that with us. I love the way you express this and Bridget is a true light.Our daughters with DS epitomize the saying that the whole is greater than the sum of it's parts!

  5. Lisa,
    Your writing is so real I can feel it. A year ago I never thought I would feel joy or happiness again... because my daughter was born with Down Syndrome. I am ashamed to say that,but it is true. When I found your blog and met you, I thought there was no way I could ever feel at peace with her diagnoses or this path in life. YOU gave me hope and a year later I "see the light"! Your writing is so beautiful, I am so glad you speaks to my heart! Andrea

  6. I cried and smiled when watching the video! What a treasure!

  7. This is one of the most beautiful pieces of writing I have ever read. You brought tears to my eyes...and I can easily put myself in your shoes with the way I feel for Colin. Thank you for contributing your story...

  8. Just wonderful!!!!
    Lisa, thank you so much for stopping by and dropping me these beautiful lines that made my day!!!! Please please please come again!!! :)
    P. S. Bridget is ADORABLE!!!!!! ♥

  9. Bridget is a beautiful girl {{{HUGS}}}}

  10. This is beautiful. It reminds me of when my Riley was born. We too were concerned, saddened, and scared, but the moment we saw her in NICU, she was ours and she was perfect. She has brightened our lives and the lives of everyone she meets and taught us so many wonderful lessons as well. THANK YOU for showing such a positive side to having a child with DS.

  11. Absolutely beautiful! I'm serious when I say I'm going to get the book and have you sign it!

  12. What a beautiful, beautiful girl you have, nestled amongst the rest of her gorgeous siblings. I love it.