A New Year

And some new pictures to go with it :).

She's from Ukraine alright :), this girl loves high heels!
And can walk in them!

Alina is obsessed with Alphie the Learning Robot
(she dresses him with any clothing that is laying around and loves
to put stretchy headbands with big bows on him!)

Doctor Alina listening to the robot's chest (in backwards
footy sleeper and hot pink cowboy boots)

Bridget talking to her dollies

Sisters, enjoying popsicles in bright afternoon sunlight

I have no idea what was so interesting out there,
but look at those cute little bodies :)

Two little girls, not feeling well, but laughing anyway :)

Living in the Light, Explained

When we merged Bridget's Light and Loving Alina, there was little question whether our new blog title would include the word light.  Our whole story revolves around it.

We couldn't have predicted how Bridget's arrival would change us, would enrich us.  Or how Bridget's light would lead us to Alina--and how Alina herself would further enrich us.  But it did, and they did.  Bridget and Alina have brought a special warmth and clarity to our family that we didn't know we were missing.  

With open eyes and open hearts, we now live a new truth.  We are keenly aware that all people are the same within.  Though none of us is "perfect", we are all perfectly made. 

We all have challenges...and gifts.  And each one of us adds to the whole.  Our youngest girls add in so many ways.  Above all, they've multiplied the goodness in our lives...in spades.

We've gained perspective--we see Life through a new lens.  We waste little time worrying about the superficial, and our home is filled with laughter and warmth.  Our two littlest girls are a huge part of that--they shine.

Things aren't always easy, or sparkly, at our house.  We're not exceptionally virtuous, though we try our best to live right and to be grateful for each day.  We're living an ordinary life, but we're aware, joyful and appreciative.  

We are Living in the Light.

 

These two little girls have blessed us beyond belief.  They're vibrant, beautiful people who are so very loved and enjoyed.

Please join us as our family story continues to unfold.  Day or night, you are welcome to come visit here.  Come laugh with us and learn with us, and be empowered.

There's a whole lot of darkness out there.  Let the light in...

Love, Lisa

*Alina was named by her birth parents...her name means light.

Flashback

There is a specific reason this story is posted today.  Check back tomorrow to learn the significance...

A Regular Baby (Bridget’s Arrival)

Written by big sister Sara on her 11th birthday (10.22.07)

Bridget looked just like a regular baby. She didn’t look any different than I thought she would. She was really beautiful and sweet, but I was worried about her health and what her life would be like. I was sad about all the things she might not be able to do. When I first saw her, I remember exploding into tears. I don’t know exactly why—I just did. I felt a mix of emotions. I was excited that she was born, but I was also a little disappointed. I was just hoping for a regular baby that we could take home in a couple of days.

I’m 11 and the oldest of five now that Bridget is here. I thought our family was big enough already with my two little brothers and one sister. When my mom told me she was pregnant with number five, I cried. I was happy—and surprised—and a little worried about the added responsibility of having another younger sibling. I had no idea how all of our lives would change the day she was born.

We were all supposed to wear pink t-shirts to the hospital to meet our new baby sister. But, she was almost six weeks early and the shirts we ordered had not arrived yet. My dad came to pick us up, and we had to hurry because Bridget needed surgery and was being moved to a different hospital. When we got there, I could tell my mom had been crying. She said Bridget would be fine, but that there was something other than the surgery that we needed to know about. “Bridget has Down syndrome,” she said quietly. We talked about what that meant as a family for only a few minutes before the nurses brought our new baby sister to see us.

As I looked at her, I felt sad that she couldn’t come home with us. I didn’t like seeing her in that plastic bed with all the tubes and wires attached to her. I wondered how long she would be in the hospital and what life would be like once she came home. I did not know what to expect.

After her surgery, I spent many hours at the hospital with Bridget. As I got to know her, I discovered that my baby sister was just a regular baby after all.

I realized that she was absolutely perfect. She was warm and soft and she smelled sweet. She even looked a lot like I did when I was a baby. I ached when I had to leave without her. I slept with clothes she had worn that we brought home to wash. I couldn’t wait to have her home with the rest of us.

We had all been so sad when Bridget was born needing surgery. And then there was the Down syndrome part. I didn’t know when we would be happy again, or if we would even be celebrating her birth. But, when she was finally able to leave the hospital--after a month-long stay--our whole family walked around her hospital floor like we were in a parade. My mom carried Bridget. We were all smiling and waving and proudly wearing our pink t-shirts. The nurses were clapping. It was a great celebration.

I know now that you can’t just hear an explanation of Down syndrome, or go on the computer and research it. The way to learn about Down Syndrome is to know someone with it.

Before Bridget was born, I never thought much about people with disabilities. I didn’t really pay attention. Now, when I see people with handicaps or disabilities, I pay more attention. I know they sometimes have to try harder to do the things most of us take for granted. I see people with disabilities as regular people who are just trying to learn and to enjoy life like everyone else--and I think of the families that love them.

To me, Bridget is the most beautiful baby in the world. She’s adorable and funny and she likes for me to hold her against my chest. I know she loves me because she smiles at me. I feel like we are going to be really close. I think Bridget was made especially for our family. She’s like a puzzle piece that fits perfectly and makes us complete. We didn’t know it, but we were waiting for her all along.

Darkness and Light, Revisited

I will love the light for it shows me the way.

Yet I will endure the darkness for it shows me the stars.

~Og Mandino

It is hard not to be hopeful when you've "seen the light"--when you have learned that the darkest moments illuminate.

I've covered it before on this blog, how we came through the darkness of early diagnosis into the light...Bridget's Light, Alina's Hope...

When Bridget was born and I was in the phase of trying to figure it all out, I was unsure of many things. I felt off-balance, and a little scared. I spent the first 24 hours after Bridget's birth without her. She needed surgery and was taken to another hospital. I don't like thinking about that first day, there was so much sadness.

But an epiphany came despite the darkness--or more likely, because of it. I can tell you the moment it all started to swing, the moment I felt awe instead of fear about our new life with Bridget. She was sleeping peacefully, recovering from her surgery. Chris and I were standing together, studying her, completely absorbed in her and in that moment. We'd been so quiet following her birth, not knowing how to console each other or how to sort it all out. I've said it before, how it occurred to us at the same time, how we looked at each other and smiled. We had the same realization at the same time:  Bridget is ours, she is whole and she is perfect. There are no mistakes, we are all perfectly made.

We are all perfect and imperfect at the same time. Bridget has given us the gift of seeing both our own potential and our own limits, and of seeing people without distinction by side-stepping artificial boundaries which separate and belittle. She's given us a lesson in reverence, in understanding that there is something greater while celebrating the life that is ours.

Begin challenging your own assumptions. 

Your assumptions are
your windows on the world. 

Scrub them off every once in a while,

or the light won't come in.

~Alan Alda

Sunday Morning Sunshine

 

Please Come Visit

...our new blog:  LIVING IN THE LIGHT

"Hi, Shadow!"

Bridget has always loved her shadow. We're at the beach, and she discovered it on our deck today. She was captivated by the way her shadow looked when she swung a frisbee from side-to-side. "Hi, Shadow!," she would shout from time to time.



Bridget is loving the beach. She keeps saying, "Mommy, shoes. Beach!"

She is our honorary and official flip-flop washer. She's got complete control of the foot shower by our deck. Got sand on your shoes? Bridget is your gal :).

Here she is watching Max & Ruby and eating her snack of Goldfish in the late afternoon sunshine:

Stay tuned for more from the beach...

Take My Hand--Isle of Capri

Isle of Capri
(For Kelle and Nella)

Take my hand
the both of you
There is something
I want you to see

There is a little girl dancing
with her big sister
and her momma and her daddy
on Isle of Capri

See the light
coming from over there
in the distance?
It is not the sun

There is a family whose love
has opened many hearts
and minds, whose light shines
so others may see

The littlest one dances
her feet in the sand
her heart soaring above
(Their hearts soaring above)

For they know the secret to happiness
That beauty is within
and that Love dissolves fear
(Love is big: there is nothing to fear)

There is no other way
This is the life meant for them
so they live it, fulfilled
knowing that they are blessed

They have learned
that each moment is precious
that each human is precious
and that neither should be taken for granted

They dance because they are the lucky ones
and because they know
that each unique footprint in the sand
is the mark of Goodness

***

This is your life. Grab it. Love it. Roll in it. Own it. Be grateful for it.

You sparkle, and we're all a little better for knowing you.


**This post was written for a family with a new Ds diagnosis. Follow the links in the title above to visit their blog and to read the incredibly moving birth story of Nella Cordelia.

We're Expecting...

...a toddler!

Anyone who knows us will not be particularly surprised to learn that we are adding once again to our family, even though we thought that Bridget would be our last. We really were not looking to grow our already fairly large family--but then a little girl came into our view and into our hearts, and changed all of that.

Just over a week ago, I visited the website for Reece's Rainbow (an organization which promotes the international adoption of children with Down syndrome) via a link on another blog. I had no idea at the time that the click of a button would change the course of our lives forever.

Chris and I had been talking with the kids about charitable giving and had decided to donate to Reece's Rainbow through the Angel Tree fundraiser. We love that all donations go directly to a particular child's adoption fund, thereby increasing the chances that he or she will be adopted.

(Unfortunately, in many parts of the world, orphans with Down syndrome are living on borrowed time. Between the ages of three to five, the paperwork is started and they are soon transferred to an institution, where care is very poor and chance of survival past one year is slim.)

While all of the children on the site pulled at our heartstrings, we could not stop thinking about one little girl in particular. Her name is Alina, and she is about nine months younger than Bridget. (She looks quite a bit like Bridget from the one picture we have seen of her.) The picture on the Reece's Rainbow website is not great, though. Her head is shaved (which apparently is common practice during the warmer months in many orphanages) and her little lips are chapped. She is not looking at the camera in the grainy photo.

Still, we see a beautiful little girl with great potential, and much to offer--who needs a family willing to love her, care for her and give her a chance at life. Chris and I did not decide immediately to adopt her ourselves, but agreed that we would help to raise money for her adoption fund.

We barely spoke about Alina after that first night, but she weighed heavily on our hearts for the next several days. Though busy with the details of everyday life, we could think of little else. Finally, one morning when the kids were all at school, I approached Chris--although to hear him tell it, I "ambushed" him :).

That little girl...is there any way..., I began. I couldn't even get the words out.

He paused briefly (though I think he knew the question was coming, so much for his ambush theory). It wouldn't be easy, he started. He was nodding yes, but not making any sound.

We both knew we needed some time to process what was happening. Were we making the decision to pursue adopting her? We both knew the answer was yes, if the kids were on board.

That night at dinner we talked with our children about Alina, her need for a family and how they would feel about bringing her here. We had our laptop at the kitchen table with her picture pulled up. I asked Bridget, What do you think about this baby? Looking at the picture on the computer screen, she signed and said, Baby. Sad.

Do you want to bring her to our house?, I asked. DO!, she said (which means yes).

We asked for a show of hands, Who would like to make Alina part of our family? Hands shot up quickly (even Bridget). Emmy was the only one who wasn't teary-eyed at this point. She looked up from her plate, then side-to-side. Wait, we're talking about ADOPTING A BABY?

Yes, Emmy, said Chris. How do you feel about that?

As long as she doesn't wake me up at night...

Kyle jumped in, Geez, Emmy! Emmy mouthed (with a grin), What?!

We should adopt her because she needs love and support to have a better future, said Brian.

We would be giving her a chance at life, added Sara.

Bridget was saying and signing, Mommy. Daddy. Baby. Mommy. Daddy. Baby. (We're not exactly sure why, but she must have had an idea of what we were talking about.)

Do you all realize that Alina has Down syndrome? asked Chris. It would mean that you would have two little sisters with Down syndrome.

That would be good, Kyle offered. I love Bridget and I like having lots of siblings. I think it would be good for Bridget, too. Alina needs a family and we are the perfect family for her.

One by one, the kids left the table to finish homework or to get ready for bed until just Chris and I were left at the table with Bridget. We sat across from one another, teary-eyed and tired, but feeling incredibly blessed and completely at peace with our decision and our new journey.

So within a week of seeing Alina's picture, we went from hoping to raise money for her adoption fund, to making a commitment to be her forever family. The decision wasn't really a tough one. We know there will be challenges, but we also know there will be untold rewards.

We move forward with hope and joyful anticipation of Alina's arrival (this summer, if all goes as planned).

Please keep us in your thoughts. Prayers and good wishes are welcome and appreciated for Alina: for her continued health, safety and comfort; and for us: for energy as we work through the details of her adoption, and for patience in waiting to bring her home.

We invite you to follow along and share in our joy as we become a family of eight:

Loving Alina

We're Expecting...

...a toddler!

Anyone who knows us will not be particularly surprised to learn that we are adding once again to our family, even though we thought that Bridget would be our last. We really were not looking to grow our already fairly large family--but then a little girl came into our view and into our hearts, and changed all of that.

Just over a week ago, I visited the website for Reece's Rainbow (an organization which promotes the international adoption of children with Down syndrome) via a link on another blog. I had no idea at the time that the click of a button would change the course of our lives forever.

Chris and I had been talking with the kids about charitable giving and had decided to donate to Reece's Rainbow through the Angel Tree fundraiser. We love that all donations go directly to a particular child's adoption fund, thereby increasing the chances that he or she will be adopted.

(Unfortunately, in many parts of the world, orphans with Down syndrome are living on borrowed time. Between the ages of three to five, the paperwork is started and they are soon transferred to an institution, where care is very poor and chance of survival past one year is slim.)

While all of the children on the site pulled at our heartstrings, we could not stop thinking about one little girl in particular. Her name is Alina, and she is about nine months younger than Bridget. (She looks quite a bit like Bridget from the one picture we have seen of her.) The picture on the Reece's Rainbow website is not great, though. Her head is shaved (which apparently is common practice during the warmer months in many orphanages) and her little lips are chapped. She is not looking at the camera in the grainy photo.

Still, we see a beautiful little girl with great potential, and much to offer--who needs a family willing to love her, care for her and give her a chance at life. Chris and I did not decide immediately to adopt her ourselves, but agreed that we would help to raise money for her adoption fund.

We barely spoke about Alina after that first night, but she weighed heavily on our hearts for the next several days. Though busy with the details of everyday life, we could think of little else. Finally, one morning when the kids were all at school, I approached Chris--although to hear him tell it, I "ambushed" him :).

That little girl...is there any way..., I began. I couldn't even get the words out.

He paused briefly (though I think he knew the question was coming, so much for his ambush theory). It wouldn't be easy, he started. He was nodding yes, but not making any sound.

We both knew we needed some time to process what was happening. Were we making the decision to pursue adopting her? We both knew the answer was yes, if the kids were on board.

That night at dinner we talked with our children about Alina, her need for a family and how they would feel about bringing her here. We had our laptop at the kitchen table with her picture pulled up. I asked Bridget, What do you think about this baby? Looking at the picture on the computer screen, she signed and said, Baby. Sad.

Do you want to bring her to our house?, I asked. DO!, she said (which means yes).

We asked for a show of hands, Who would like to make Alina part of our family? Hands shot up quickly (even Bridget). Emmy was the only one who wasn't teary-eyed at this point. She looked up from her plate, then side-to-side. Wait, we're talking about ADOPTING A BABY?

Yes, Emmy, said Chris. How do you feel about that?

As long as she doesn't wake me up at night...

Kyle jumped in, Geez, Emmy! Emmy mouthed (with a grin), What?!

We should adopt her because she needs love and support to have a better future, said Brian.

We would be giving her a chance at life, added Sara.

Bridget was saying and signing, Mommy. Daddy. Baby. Mommy. Daddy. Baby. (We're not exactly sure why, but she must have had an idea of what we were talking about.)

Do you all realize that Alina has Down syndrome? asked Chris. It would mean that you would have two little sisters with Down syndrome.

That would be good, Kyle offered. I love Bridget and I like having lots of siblings. I think it would be good for Bridget, too. Alina needs a family and we are the perfect family for her.

One by one, the kids left the table to finish homework or to get ready for bed until just Chris and I were left at the table with Bridget. We sat across from one another, teary-eyed and tired, but feeling incredibly blessed and completely at peace with our decision and our new journey.

So within a week of seeing Alina's picture, we went from hoping to raise money for her adoption fund, to making a commitment to be her forever family. The decision wasn't really a tough one. We know there will be challenges, but we also know there will be untold rewards.

We move forward with hope and joyful anticipation of Alina's arrival (this summer, if all goes as planned).

Please keep us in your thoughts. Prayers and good wishes are welcome and appreciated for Alina: for her continued health, safety and comfort; and for us: for energy as we work through the details of her adoption, and for patience in waiting to bring her home.

We invite you to follow along and share in our joy as we become a family of eight:

Loving Alina

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Bridget - A Beautiful Life

Welcome to anyone who is just finding us through the Respect Life materials!

I was contacted earlier this year by the United States Conference of Catholic Bishops for our permission to use Bridget's image (specifically, this picture I took of Chris and Bridget one relaxed and happy morning in the spring of 2008) in the Respect Life materials for this year. For those of Catholic faith, this--the first Sunday in October--is Respect Life Sunday.

Though we are not Catholic--and don't discuss our religious or political beliefs here--we do feel that Life itself is precious and that every life has value.

I've written here about my own philosophy on the inherent goodness in the world, and in people, and about my feelings on gratitude and "reverence". I don't discuss the moral and ethical considerations of prenatal testing or termination, and I try to stay out of debates about those issues. Bridget's Light is meant to educate, comfort and inspire. It is where I advocate for Bridget and for other people and families living with Down syndrome.

I will say openly that we did not have prenatal testing with any of our children because we felt we were prepared to handle and embrace whatever came our way. We feel that Life is a gift, and that Bridget is a gift.

We see the merit in many different religions and spiritual (or personal) belief systems, and we are honored that Bridget's picture was selected to represent the value, worth and dignity of all people.

Today, as every other day, we are celebrating Bridget and celebrating Life. We are grateful for Bridget--for her smile, for her presence in our lives, for everything about her.

***

Coming up this week on Bridget's Light: Describing Bridget--Thoughts from Her Siblings

Bridget - A Beautiful Life

Welcome to anyone who is just finding us through the Respect Life materials!

I was contacted earlier this year by the United States Conference of Catholic Bishops for our permission to use Bridget's image (specifically, this picture I took of Chris and Bridget one relaxed and happy morning in the spring of 2008) in the Respect Life materials for this year. For those of Catholic faith, this--the first Sunday in October--is Respect Life Sunday.

Though we are not Catholic--and don't discuss our religious or political beliefs here--we do feel that Life itself is precious and that every life has value.

I've written here about my own philosophy on the inherent goodness in the world, and in people, and about my feelings on gratitude and "reverence". I don't discuss the moral and ethical considerations of prenatal testing or termination, and I try to stay out of debates about those issues. Bridget's Light is meant to educate, comfort and inspire. It is where I advocate for Bridget and for other people and families living with Down syndrome.

I will say openly that we did not have prenatal testing with any of our children because we felt we were prepared to handle and embrace whatever came our way. We feel that Life is a gift, and that Bridget is a gift.

We see the merit in many different religions and spiritual (or personal) belief systems, and we are honored that Bridget's picture was selected to represent the value, worth and dignity of all people.

Today, as every other day, we are celebrating Bridget and celebrating Life. We are grateful for Bridget--for her smile, for her presence in our lives, for everything about her.

***

Coming up this week on Bridget's Light: Describing Bridget--Thoughts from Her Siblings

Precious Baby Bridget

~A look back to over three years ago~

Look at this little pumpkin! We'd been home from the hospital for just a few weeks when I snapped this photo. Bridget was five pounds when she was born, but was already starting to put on some weight. When I see this picture, I realize that I am falling in love all over again. I also realize what my youngest daughter has been trying to tell me all along: "Mom, I am going to be okay!" Today, when Bridget coughs or trips, she shouts, "OH KAY!" She's started to anticipate me asking, "Are you okay?" (which I do every. single. time. she coughs, trips, clears her throat, etc.). When she was tiny, I worried about her health, how much she was eating, what she was hearing, seeing, learning. At every turn, she reassured me. I just needed to listen a little more closely...

Precious Baby Bridget

~A look back to over three years ago~

Look at this little pumpkin! We'd been home from the hospital for just a few weeks when I snapped this photo. Bridget was five pounds when she was born, but was already starting to put on some weight. When I see this picture, I realize that I am falling in love all over again. I also realize what my youngest daughter has been trying to tell me all along: "Mom, I am going to be okay!" Today, when Bridget coughs or trips, she shouts, "OH KAY!" She's started to anticipate me asking, "Are you okay?" (which I do every. single. time. she coughs, trips, clears her throat, etc.). When she was tiny, I worried about her health, how much she was eating, what she was hearing, seeing, learning. At every turn, she reassured me. I just needed to listen a little more closely...

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 in.

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.

***

Make photo slide shows at
www.OneTrueMedia.com

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 in.

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.

***

Make photo slide shows at
www.OneTrueMedia.com

Just your average preschooler

...enjoying a book while wearing a tutu.