Pathways, Paintings and Memories

So Saturday was my birthday, and Chris surprised me with a new painting (this one, of the pathway) by B.J. Stapen, an artist we met in Santa Barbara, CA, about five years ago. Her paintings are timeless. I can see myself walking down this path, quietly drawing in the power and beauty of the place.

We're not art collectors, and I don't have much on my walls besides family pictures, but I fell in love with B.J.'s work as soon as we saw her booth at the weekly Sunday art show by the beach. (It was the summer of '04, the day we spent in and around Santa Barbara before my surgery.) We now have about a dozen of her paintings, including this newest one. If I could, I'd have one in every room.

I lived in Santa Barbara when I was little and my dad was in graduate school at UCSB. I have vivid memories of running around married student housing barefoot with a huge pack of kids (mostly preschool to early school age). We still keep in touch with several of the families.

None of us had any extra money at the time, so life wasn't extravagant in terms of stuff. But boy was it luxurious in other ways--like an absolutely perfect climate and lush, captivating views everywhere you'd look. For a treat on Saturday mornings, my parents would fill a thermos with coffee, pick up some donuts and take us to the playground at the beach. They say those were some of the best days.

Back to this past Saturday...when everyone was singing Happy Birthday, Bridget began dancing in the middle of the group. She was twirling with her hands high in the air. She was singing her own version of the birthday song and enjoying it. When the song finished, she clapped and yelled, "Day Day! Yea!" What a Day Day it was...

Pathways, Paintings and Memories

So Saturday was my birthday, and Chris surprised me with a new painting (this one, of the pathway) by B.J. Stapen, an artist we met in Santa Barbara, CA, about five years ago. Her paintings are timeless. I can see myself walking down this path, quietly drawing in the power and beauty of the place.

We're not art collectors, and I don't have much on my walls besides family pictures, but I fell in love with B.J.'s work as soon as we saw her booth at the weekly Sunday art show by the beach. (It was the summer of '04, the day we spent in and around Santa Barbara before my surgery.) We now have about a dozen of her paintings, including this newest one. If I could, I'd have one in every room.

I lived in Santa Barbara when I was little and my dad was in graduate school at UCSB. I have vivid memories of running around married student housing barefoot with a huge pack of kids (mostly preschool to early school age). We still keep in touch with several of the families.

None of us had any extra money at the time, so life wasn't extravagant in terms of stuff. But boy was it luxurious in other ways--like an absolutely perfect climate and lush, captivating views everywhere you'd look. For a treat on Saturday mornings, my parents would fill a thermos with coffee, pick up some donuts and take us to the playground at the beach. They say those were some of the best days.

Back to this past Saturday...when everyone was singing Happy Birthday, Bridget began dancing in the middle of the group. She was twirling with her hands high in the air. She was singing her own version of the birthday song and enjoying it. When the song finished, she clapped and yelled, "Day Day! Yea!" What a Day Day it was...

Left with Love

The world is filled with people that don’t fit the mold of what society says is perfect, smart, worthwhile, etc. Once you have seen the light in someone that the world may reject, you see that light everywhere. The detritus of life falls away and you’re left with love.

- Ann at Three Little Birds from her post yin and yang

And that, my friends, is the straight-up truth.


*From Merriam-Webster: detritus: noun, pronounced \di-ˈtrī-təs\

1: loose material (as rock fragments or organic particles) that results directly from disintegration 2 a: a product of disintegration, destruction, or wearing away : DEBRIS b: miscellaneous remnants : ODDS AND ENDS- sifting through the detritus of his childhood -Michael Tomasky

Left with Love

The world is filled with people that don’t fit the mold of what society says is perfect, smart, worthwhile, etc. Once you have seen the light in someone that the world may reject, you see that light everywhere. The detritus of life falls away and you’re left with love.

- Ann at Three Little Birds from her post yin and yang

And that, my friends, is the straight-up truth.


*From Merriam-Webster: detritus: noun, pronounced \di-ˈtrī-təs\

1: loose material (as rock fragments or organic particles) that results directly from disintegration 2 a: a product of disintegration, destruction, or wearing away : DEBRIS b: miscellaneous remnants : ODDS AND ENDS- sifting through the detritus of his childhood -Michael Tomasky

The Light at the Beach, Part III...

The Light at the Beach, Part III...

The Light at the Beach, Part II...

The Light at the Beach, Part II...

The Light at the Beach...

I wish I could bottle it and bring it back home. I wouldn't say that envy is a feeling I have very often, but I have to admit I am a little bit jealous of people who live near the coast, where the quantity and quality of sunlight is unparalleled. I'm not talking about mid-day sun. It's the gentle light in the morning and late afternoon-evening that makes my heart sing.

We've been on vacation and I've had some time to put it all aside--to touch, breathe, listen--to stop moving so fast. And I've loved every minute of it. I took a lot of pictures (I plan to share more here soon) so I could remember it all.

I don't know the first thing about photography, but I know I love what I see through the lens of my camera. Time flies by. Capturing a moment in time on film is priceless.

I looked out onto our deck one day last week to see Bridget sitting happily in her Daddy's lap. They were nose-to-nose, then hugging, then laughing. The look on her face was the sweetest thing I've seen in a long time. She was so completely captivated by him and the time they were spending together. He never stopped smiling. They played pat-a-cake many times over and then he began to swing her high in the air. What a life...

The Light at the Beach...

I wish I could bottle it and bring it back home. I wouldn't say that envy is a feeling I have very often, but I have to admit I am a little bit jealous of people who live near the coast, where the quantity and quality of sunlight is unparalleled. I'm not talking about mid-day sun. It's the gentle light in the morning and late afternoon-evening that makes my heart sing.

We've been on vacation and I've had some time to put it all aside--to touch, breathe, listen--to stop moving so fast. And I've loved every minute of it. I took a lot of pictures (I plan to share more here soon) so I could remember it all.

I don't know the first thing about photography, but I know I love what I see through the lens of my camera. Time flies by. Capturing a moment in time on film is priceless.

I looked out onto our deck one day last week to see Bridget sitting happily in her Daddy's lap. They were nose-to-nose, then hugging, then laughing. The look on her face was the sweetest thing I've seen in a long time. She was so completely captivated by him and the time they were spending together. He never stopped smiling. They played pat-a-cake many times over and then he began to swing her high in the air. What a life...

In Honor of 3/21, World Down Syndrome Day

Another Thoreau quote...this one just seems to fit today:

It is only when we forget all our learning that we begin to know.

In Honor of 3/21, World Down Syndrome Day

Another Thoreau quote...this one just seems to fit today:

It is only when we forget all our learning that we begin to know.

Bring an Open Heart and Mind

I'm at the beach, briefly checking email and browsing my favorite blogs. (I've been trying to keep up-to-date on my blogging friends in need of positive energy.)

It has been a relaxed and sunny morning, and although I wasn't planning on blogging today, I didn't want to forget to pass along some of what I came across this morning.

If you haven't already found Candee Basford's World of Possibility (formerly Art of Possibility), please spend some time browsing her blog--I promise you will come away from it feeling empowered, and wondering why we aren't all talking and thinking about disability, community, belonging, connectedness, & possibility the way Candee does. (I've linked to Candee before. Find that here.)

Like most of us who are actively advocating for our children with disabilities, I often find myself trying to assess the way the rest of the world perceives Ds and disability in general. I try to find words to express what we see in Bridget and what we have experienced with and through her. I've discovered that there is a huge disconnect between what I knew and thought (or what I thought I knew) about Down syndrome before Bridget came along and what I feel compelled to share now that she's here.

I think people are uncomfortable with disability when they haven't consciously lived with it. (We all have disabilities, we just don't always realize it.) "Different" isn't so scary when we realize that "different" doesn't mean "less"--and "typical" doesn't necessarily mean "desired".

I've recently reconnected with many old friends (via facebook) who were unaware that Bridget was born with Down syndrome and were unsure of what that meant for her, and for us. What I've discovered is that despite an increase in public discourse and media attention in the past few years, Down syndrome itself is still largely misunderstood by the general public. Worse yet, I think misconceptions and inaccuracies abound within the medical community.

Several people have asked recently whether or not we knew about Bridget's diagnosis before she was born--we didn't--but the question has allowed me to talk a little bit about prenatal counseling and all the improvements that need to be made in this area. Expectant parents deserve up-to-date, unbiased information about the condition, although many are still offered inaccurate information which paints a dim picture of the life and potential of people with Ds.

People are shocked to hear of the incredibly high termination rates of Ds pregnancies. I believe that many parents are making choices based on limited information and stereotypes which unfairly highlight potential challenges in the life of a person with Down syndrome rather than highlighting the potential in the person. That's why so many of our children are stowaways, their "imperfections" undetected until arrival. What got me thinking about all this was the link Candee recently posted to an article called Airbrushing Away Diversity, which originally appeared in The Ottowa Citizen in March, 2008. The article, which tells the story of a couple coming to terms with their daughter's Ds diagnosis, discusses specifically the high termination rates of Ds pregnancies and the consequences of outdated views on Ds and biased prenatal counseling. I was struck by Candee's comment on this article:

To their surprise, Michael and Leslie had Sydney - and within their relationship and love for Sydney, came to realize something new, something they were totally unaware of before Sydney. As it turns out, Sydney transformed the way they view the world and the way they see themselves. I've had a similar experience - it is heart-wrenching and heart-opening when one becomes aware that much of what we have learned in our society is just plain wrong. It all begs the question of what happens to us that makes us so closed to newness and possibility.

So what do you think...how can we open others to "newness and possibility"--to see our children not in the shadow of disability, but in the light of potential? The discussion is an important one. Let's keep the dialogue open. Feel free to talk amongst yourselves, or write here...

Bring an Open Heart and Mind

I'm at the beach, briefly checking email and browsing my favorite blogs. (I've been trying to keep up-to-date on my blogging friends in need of positive energy.)

It has been a relaxed and sunny morning, and although I wasn't planning on blogging today, I didn't want to forget to pass along some of what I came across this morning.

If you haven't already found Candee Basford's World of Possibility (formerly Art of Possibility), please spend some time browsing her blog--I promise you will come away from it feeling empowered, and wondering why we aren't all talking and thinking about disability, community, belonging, connectedness, & possibility the way Candee does. (I've linked to Candee before. Find that here.)

Like most of us who are actively advocating for our children with disabilities, I often find myself trying to assess the way the rest of the world perceives Ds and disability in general. I try to find words to express what we see in Bridget and what we have experienced with and through her. I've discovered that there is a huge disconnect between what I knew and thought (or what I thought I knew) about Down syndrome before Bridget came along and what I feel compelled to share now that she's here.

I think people are uncomfortable with disability when they haven't consciously lived with it. (We all have disabilities, we just don't always realize it.) "Different" isn't so scary when we realize that "different" doesn't mean "less"--and "typical" doesn't necessarily mean "desired".

I've recently reconnected with many old friends (via facebook) who were unaware that Bridget was born with Down syndrome and were unsure of what that meant for her, and for us. What I've discovered is that despite an increase in public discourse and media attention in the past few years, Down syndrome itself is still largely misunderstood by the general public. Worse yet, I think misconceptions and inaccuracies abound within the medical community.

Several people have asked recently whether or not we knew about Bridget's diagnosis before she was born--we didn't--but the question has allowed me to talk a little bit about prenatal counseling and all the improvements that need to be made in this area. Expectant parents deserve up-to-date, unbiased information about the condition, although many are still offered inaccurate information which paints a dim picture of the life and potential of people with Ds.

People are shocked to hear of the incredibly high termination rates of Ds pregnancies. I believe that many parents are making choices based on limited information and stereotypes which unfairly highlight potential challenges in the life of a person with Down syndrome rather than highlighting the potential in the person. That's why so many of our children are stowaways, their "imperfections" undetected until arrival. What got me thinking about all this was the link Candee recently posted to an article called Airbrushing Away Diversity, which originally appeared in The Ottowa Citizen in March, 2008. The article, which tells the story of a couple coming to terms with their daughter's Ds diagnosis, discusses specifically the high termination rates of Ds pregnancies and the consequences of outdated views on Ds and biased prenatal counseling. I was struck by Candee's comment on this article:

To their surprise, Michael and Leslie had Sydney - and within their relationship and love for Sydney, came to realize something new, something they were totally unaware of before Sydney. As it turns out, Sydney transformed the way they view the world and the way they see themselves. I've had a similar experience - it is heart-wrenching and heart-opening when one becomes aware that much of what we have learned in our society is just plain wrong. It all begs the question of what happens to us that makes us so closed to newness and possibility.

So what do you think...how can we open others to "newness and possibility"--to see our children not in the shadow of disability, but in the light of potential? The discussion is an important one. Let's keep the dialogue open. Feel free to talk amongst yourselves, or write here...

A Thought for Today...

It's not what you look at that matters, it's what you see.

-Thoreau

A Thought for Today...

It's not what you look at that matters, it's what you see.

-Thoreau

From Fear to Awe, Part II

From An Altar in the World:

"Reverence stands in awe of something--something that dwarfs the self, that allows human beings to sense the full extent of our limits--so that we can begin to see one another more reverently as well."

Living in awe means many things. The phrase is not inextricably tied to religion, although it certainly implies an understanding of something greater than the self.

Living in awe means paying attention (or noticing), appreciating, and accepting that we do not have ultimate control (although we can impact how our lives play out).

I've always sought more--deep connections, meaningful experiences. And I've found these things in expected, comfortable places. But I've also found them in darker places, where I never thought I wanted to be.

I've learned that to live in awe, we need to recognize greatness and beauty in everyday life while understanding the limits of what we can do (or know). We shouldn't be complacent, but should respect and celebrate the life that we have.

I learned to breathe--to feel the power of my own breath--the day before my brain surgery. As I sat in a beautiful rose garden near the mission in Santa Barbara, an older gentleman caught my attention. He was exercising...barefoot, wearing only running shorts and a smile. He was lunging, very slowly and with purpose, from one foot to the other. He was taking deep breaths, obviously loving what he was doing. I'd guess this was his daily ritual and routine. It was a physical and spiritual activity, this lunging and breathing. He seemed to be drawing on the power of the earth itself, and I felt it, too. I knew immediately that I was meant to see him, to notice.

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 another 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.

From Fear to Awe, Part II

From An Altar in the World:

"Reverence stands in awe of something--something that dwarfs the self, that allows human beings to sense the full extent of our limits--so that we can begin to see one another more reverently as well."

Living in awe means many things. The phrase is not inextricably tied to religion, although it certainly implies an understanding of something greater than the self.

Living in awe means paying attention (or noticing), appreciating, and accepting that we do not have ultimate control (although we can impact how our lives play out).

I've always sought more--deep connections, meaningful experiences. And I've found these things in expected, comfortable places. But I've also found them in darker places, where I never thought I wanted to be.

I've learned that to live in awe, we need to recognize greatness and beauty in everyday life while understanding the limits of what we can do (or know). We shouldn't be complacent, but should respect and celebrate the life that we have.

I learned to breathe--to feel the power of my own breath--the day before my brain surgery. As I sat in a beautiful rose garden near the mission in Santa Barbara, an older gentleman caught my attention. He was exercising...barefoot, wearing only running shorts and a smile. He was lunging, very slowly and with purpose, from one foot to the other. He was taking deep breaths, obviously loving what he was doing. I'd guess this was his daily ritual and routine. It was a physical and spiritual activity, this lunging and breathing. He seemed to be drawing on the power of the earth itself, and I felt it, too. I knew immediately that I was meant to see him, to notice.

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 another 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.

From Fear to Awe

I've been reading the book An Altar in the World by Barbara Brown Taylor. Many things I've read in it have resonated with me, but there is one particular phrase that keeps replaying in my head.

In a chapter on reverence--the recognition of something greater than the self--she writes about "making the passage from fear to awe".

Making the passage from fear to awe describes so perfectly what happens at the exact moment we realize that Down syndrome is not going to wreck our lives.

Most of us wouldn't want to re-live the initial diagnosis or the months following. But somewhere along the way, the person that is your child begins to emerge and the words "Down syndrome" begin to have less and less importance.

The fear of what life will be like fades as that life unfolds.

And then there is this person, who is so much more than a diagnosis, who you begin to see as such.

And you stand in awe...

From Fear to Awe

I've been reading the book An Altar in the World by Barbara Brown Taylor. Many things I've read in it have resonated with me, but there is one particular phrase that keeps replaying in my head.

In a chapter on reverence--the recognition of something greater than the self--she writes about "making the passage from fear to awe".

Making the passage from fear to awe describes so perfectly what happens at the exact moment we realize that Down syndrome is not going to wreck our lives.

Most of us wouldn't want to re-live the initial diagnosis or the months following. But somewhere along the way, the person that is your child begins to emerge and the words "Down syndrome" begin to have less and less importance.

The fear of what life will be like fades as that life unfolds.

And then there is this person, who is so much more than a diagnosis, who you begin to see as such.

And you stand in awe...