Family Picture Part II, The Unfolding

In the early days with Bridget, my mind never stopped racing. I talked to doctors, ate and slept with my mind clicking along. I was constantly thinking about what life was going to be like once we brought Bridget home and how I was going to manage. I'd thought baby #5 was going to be a breeze. Mmm, slight change in plans.

If you've seen our blog or website before, you already know that I had a pretty strong feeling while I was pregnant that Bridget had Down syndrome. I did not, however, go there...except in my mind. Being a planning-type, you'd think I would have learned all sorts of things to prepare, just in case my intuition was right.

But I'm also a realist, and we had no definitive information that she was anything other than a perfectly "healthy" baby. The odds were heavily in our favor for just that. So I made the decision to keep my hunch to myself, and to hope like you-know-what that I was wrong.

I had no idea what a life with Down syndrome meant. Of all the things we envision and want for our children, Down syndrome is not usually on the list. In my last post, I mentioned some of the things I thought about when I looked at the Christmas picture of the kids and tried to imagine our new baby in the mix.

When our ultrasound revealed that we were expecting a little girl, my thoughts shifted to things like room-sharing, hand-me-downs, dance recitals (or maybe soccer games), prom dresses, driving, boyfriends, college, more shoes, another wedding.

And all that is a huge part of my stumbling when Bridget was new. Was life going to be vastly different than what we'd anticipated? How would Ds affect Bridget's life, and our lives? I just couldn't get my mind around what it actually meant for any of us.

Knowing that we don't always get to choose our paths, Chris and I quickly accepted Bridget's diagnosis. We know we have to play the hand we're dealt, whether we asked for it or not.

Many times in those first few weeks, we discussed how deeply we already loved Bridget, and that we'd learn whatever we needed to learn, do whatever it took to be the best parents and advocates we could be for her. Our daily trips to the hospital did more than keep Tim Horton's in business--during our car rides together, we also solved a few of life's greatest mysteries...well, at least in part.

In one of our deeper discussions, we decided that we really don't know what the future holds for any of us, and that the things we envisioned may or may not be part of any of our children's lives--and we'd have to be okay with that.

We also came to realize that any sense of sadness or loss at that point had more to do with us, and the loss of a future that never really existed (what we anticipated, what's typical), than with Bridget.

We decided we'd have to wait for the unfolding of Bridget and her life--for her to grow and become and write her own story--before we knew how it would all play out. We had every reason to think we'd be as awed by her as we are by each of our other children. It is an incredible privilege to see a person grow and become--to see a person unfold.

There were many times in those first few weeks that I felt proud, confident and strong. At other times I slipped far out of my comfort zone, feeling vulnerable, very tired and a little scared. There's so much to learn, I kept thinking. How am I going to advocate for Bridget when I'm still not sure what her having Down syndrome really means?

My head would fill with questions and images of some of the things we'd read or had been told, and I struggled to tell myself that we would find a way to be okay, that Bridget would be okay. I didn't know that for sure, but it is what I wanted to believe. I wanted to have hope.

Bridget was in the hospital for one month. She gained weight, and strength, and showed time and again her strong will and determination. Over a few weeks time, my mind gradually began to shift from frantic thoughts about mothering her to optimistic thoughts about the future. Instead of fearing what she would have trouble doing, or what I didn't know, I began looking forward to learning about her, what she would like and what she would bring to our family. I began to understand that Bridget, and Down syndrome, would be woven seamlessly into our lives. When I realized it was happening already, I started to let go of my fears about the future.

Fast forward two-and-a-half years...to the little girl who talked me into macaroni and cheese for breakfast today, whose giggle will melt your heart. She's the center of attention wherever she goes--not dancing on tables yet, but I can't say it would surprise me in a few years. She's added more to our family than we could ever have imagined, in more ways than we could have known. She's a perfect combination of sweet & spicy, and she doesn't miss a trick. Plus, she's just plain funny.

Brian says it best, "Without Bridget, life would be pretty boring."

Who is to say that "typical" is what we should all be striving for? In many ways, Life is easier when things are predictable, but sometimes we all need a push into the unfamiliar...


**Coming soon : I wish I would have known then what I know now...

Family Picture Part II, The Unfolding

In the early days with Bridget, my mind never stopped racing. I talked to doctors, ate and slept with my mind clicking along. I was constantly thinking about what life was going to be like once we brought Bridget home and how I was going to manage. I'd thought baby #5 was going to be a breeze. Mmm, slight change in plans.

If you've seen our blog or website before, you already know that I had a pretty strong feeling while I was pregnant that Bridget had Down syndrome. I did not, however, go there...except in my mind. Being a planning-type, you'd think I would have learned all sorts of things to prepare, just in case my intuition was right.

But I'm also a realist, and we had no definitive information that she was anything other than a perfectly "healthy" baby. The odds were heavily in our favor for just that. So I made the decision to keep my hunch to myself, and to hope like you-know-what that I was wrong.

I had no idea what a life with Down syndrome meant. Of all the things we envision and want for our children, Down syndrome is not usually on the list. In my last post, I mentioned some of the things I thought about when I looked at the Christmas picture of the kids and tried to imagine our new baby in the mix.

When our ultrasound revealed that we were expecting a little girl, my thoughts shifted to things like room-sharing, hand-me-downs, dance recitals (or maybe soccer games), prom dresses, driving, boyfriends, college, more shoes, another wedding.

And all that is a huge part of my stumbling when Bridget was new. Was life going to be vastly different than what we'd anticipated? How would Ds affect Bridget's life, and our lives? I just couldn't get my mind around what it actually meant for any of us.

Knowing that we don't always get to choose our paths, Chris and I quickly accepted Bridget's diagnosis. We know we have to play the hand we're dealt, whether we asked for it or not.

Many times in those first few weeks, we discussed how deeply we already loved Bridget, and that we'd learn whatever we needed to learn, do whatever it took to be the best parents and advocates we could be for her. Our daily trips to the hospital did more than keep Tim Horton's in business--during our car rides together, we also solved a few of life's greatest mysteries...well, at least in part.

In one of our deeper discussions, we decided that we really don't know what the future holds for any of us, and that the things we envisioned may or may not be part of any of our children's lives--and we'd have to be okay with that.

We also came to realize that any sense of sadness or loss at that point had more to do with us, and the loss of a future that never really existed (what we anticipated, what's typical), than with Bridget.

We decided we'd have to wait for the unfolding of Bridget and her life--for her to grow and become and write her own story--before we knew how it would all play out. We had every reason to think we'd be as awed by her as we are by each of our other children. It is an incredible privilege to see a person grow and become--to see a person unfold.

There were many times in those first few weeks that I felt proud, confident and strong. At other times I slipped far out of my comfort zone, feeling vulnerable, very tired and a little scared. There's so much to learn, I kept thinking. How am I going to advocate for Bridget when I'm still not sure what her having Down syndrome really means?

My head would fill with questions and images of some of the things we'd read or had been told, and I struggled to tell myself that we would find a way to be okay, that Bridget would be okay. I didn't know that for sure, but it is what I wanted to believe. I wanted to have hope.

Bridget was in the hospital for one month. She gained weight, and strength, and showed time and again her strong will and determination. Over a few weeks time, my mind gradually began to shift from frantic thoughts about mothering her to optimistic thoughts about the future. Instead of fearing what she would have trouble doing, or what I didn't know, I began looking forward to learning about her, what she would like and what she would bring to our family. I began to understand that Bridget, and Down syndrome, would be woven seamlessly into our lives. When I realized it was happening already, I started to let go of my fears about the future.

Fast forward two-and-a-half years...to the little girl who talked me into macaroni and cheese for breakfast today, whose giggle will melt your heart. She's the center of attention wherever she goes--not dancing on tables yet, but I can't say it would surprise me in a few years. She's added more to our family than we could ever have imagined, in more ways than we could have known. She's a perfect combination of sweet & spicy, and she doesn't miss a trick. Plus, she's just plain funny.

Brian says it best, "Without Bridget, life would be pretty boring."

Who is to say that "typical" is what we should all be striving for? In many ways, Life is easier when things are predictable, but sometimes we all need a push into the unfamiliar...


**Coming soon : I wish I would have known then what I know now...

Family Picture

2005

I took this photo for our holiday cards in late November, 2005, just a few weeks before I became pregnant with Bridget. It was a happy time in our lives. I had recovered fully from the surgery to remove my brain tumor, and was feeling deeply appreciative of the chance to see my children grow.

This particular day was pretty typical of late fall in Ohio, cloudy and crisp--and a little bit cool--but perfect for taking pictures.

I knew as soon as I took this picture that it was the one. Looking through the lens of my camera, everything fell into place in that one moment. I had asked them all to lean into one another and to try to get their little faces as close as possible. The wind picked up a bit, Brian brought his knees to his chest, and Emmy tilted her head toward Brian. The way they look in this picture is exactly what I wanted to capture. It is so them. And it was so us at the time. Everything was easy, in order--not necessarily predictable, but easy and in order, and we were enjoying life and being together. We were all happy, and healthy, and looking forward to the future.

I had just finished mailing our Christmas cards when we found out we'd be adding another member to our family. I still had extra cards and pictures on the kitchen counter. I distinctly remember picking up this picture and studying it closely. I thought about how much I loved the picture and the people in it...each one of them equally...and more than I could ever have imagined.

What would next year's picture look like with another little face right in the middle?, I wondered. Would our new baby be a boy or a girl? What would the older kids think about having a new sibling? What would our new baby bring to the group (in terms of personality, interests, etc.)?

I imagined that this new little one would be the center of attention. The youngest of five, four years younger than Emmy...that meant he or she would be everyone's baby. Aren't youngest children always the ones dancing on tables or getting called into the principal's office? The performers, right? I laughed as I wondered if that's how it would be. I did the math (I was an English major, so this is quite an accomplishment for me) and realized that it would be just Chris and I at home when our new baby hit high school. Just the three of us.

Wow...I'm sure our child will love that, I thought, both parents in his or her business 24/7. On the flip side, Chris and I will both be able to attend this child's concerts or sporting events or awards banquets (instead of dividing and conquering, which is how we'll have to handle those things for everyone else), and he or she will get our undivided attention in times of celebration or struggle.

Fast forward 8 months...On a stifling July afternoon soon after Bridget was born, I was busy packing up items to take to Children's Hospital to place near her bed in the NICU. I grabbed a blanket (that I bought the day we found out we were having a girl), a sweet bunny that played "You are My Sunshine", and black and white pictures of all of us. I had the picture from our Christmas card in my hand as I walked out the door.

The drive down to the hospital was about 30 minutes, and was already wearing on me five minutes into the trip--and Chris was on a conference call. I was still trying to adjust to Bridget's diagnosis, and felt like a foreigner in my own skin. I glanced first at my still-round stomach, then down at the picture, which was still in my hand. I pulled it closer and took off my sunglasses. Thinking about it makes me teary even now. I flashed back to the day I took the picture...how happy I felt...how secure and how grateful. And how I found out just a few weeks later that we would be adding one more child to our family. I closed my eyes as I thought about everything that ran through my head when I'd tried to imagine our new baby right in the middle of the group.

The baby I saw did not have Down syndrome. The baby I saw looked like all of our other kids as babies. I saw a child, loved and wanted, in the center of the picture being clearly adored by his or her siblings. I saw a child who was one of us, who would add his or her own unique spark to the group. I saw a child who would increase the depth and width of our family, who would be loved and cherished, who would contribute in his or her own way to our family and to the world.

I thought about the beautiful little girl who was laying in a tiny hospital bed, recovering from surgery, deserving every chance for a full and happy life, and needing us. I thought about the little girl who looked just like Sara did as a baby, the little girl who was most definitely one of us, who was already deeply loved, who would increase the depth and width of our family in ways too numerous to list, who would bring much more than her own unique spark to our family and to the world.

It's perfect, I thought. She is perfect for us. I couldn't imagine a more beautiful family picture than one with her in it...

2006

2007
2008
**To see a photo montage of our first two years with Bridget, go here.

***Stay tuned for Part II of this story...

Family Picture

2005

I took this photo for our holiday cards in late November, 2005, just a few weeks before I became pregnant with Bridget. It was a happy time in our lives. I had recovered fully from the surgery to remove my brain tumor, and was feeling deeply appreciative of the chance to see my children grow.

This particular day was pretty typical of late fall in Ohio, cloudy and crisp--and a little bit cool--but perfect for taking pictures.

I knew as soon as I took this picture that it was the one. Looking through the lens of my camera, everything fell into place in that one moment. I had asked them all to lean into one another and to try to get their little faces as close as possible. The wind picked up a bit, Brian brought his knees to his chest, and Emmy tilted her head toward Brian. The way they look in this picture is exactly what I wanted to capture. It is so them. And it was so us at the time. Everything was easy, in order--not necessarily predictable, but easy and in order, and we were enjoying life and being together. We were all happy, and healthy, and looking forward to the future.

I had just finished mailing our Christmas cards when we found out we'd be adding another member to our family. I still had extra cards and pictures on the kitchen counter. I distinctly remember picking up this picture and studying it closely. I thought about how much I loved the picture and the people in it...each one of them equally...and more than I could ever have imagined.

What would next year's picture look like with another little face right in the middle?, I wondered. Would our new baby be a boy or a girl? What would the older kids think about having a new sibling? What would our new baby bring to the group (in terms of personality, interests, etc.)?

I imagined that this new little one would be the center of attention. The youngest of five, four years younger than Emmy...that meant he or she would be everyone's baby. Aren't youngest children always the ones dancing on tables or getting called into the principal's office? The performers, right? I laughed as I wondered if that's how it would be. I did the math (I was an English major, so this is quite an accomplishment for me) and realized that it would be just Chris and I at home when our new baby hit high school. Just the three of us.

Wow...I'm sure our child will love that, I thought, both parents in his or her business 24/7. On the flip side, Chris and I will both be able to attend this child's concerts or sporting events or awards banquets (instead of dividing and conquering, which is how we'll have to handle those things for everyone else), and he or she will get our undivided attention in times of celebration or struggle.

Fast forward 8 months...On a stifling July afternoon soon after Bridget was born, I was busy packing up items to take to Children's Hospital to place near her bed in the NICU. I grabbed a blanket (that I bought the day we found out we were having a girl), a sweet bunny that played "You are My Sunshine", and black and white pictures of all of us. I had the picture from our Christmas card in my hand as I walked out the door.

The drive down to the hospital was about 30 minutes, and was already wearing on me five minutes into the trip--and Chris was on a conference call. I was still trying to adjust to Bridget's diagnosis, and felt like a foreigner in my own skin. I glanced first at my still-round stomach, then down at the picture, which was still in my hand. I pulled it closer and took off my sunglasses. Thinking about it makes me teary even now. I flashed back to the day I took the picture...how happy I felt...how secure and how grateful. And how I found out just a few weeks later that we would be adding one more child to our family. I closed my eyes as I thought about everything that ran through my head when I'd tried to imagine our new baby right in the middle of the group.

The baby I saw did not have Down syndrome. The baby I saw looked like all of our other kids as babies. I saw a child, loved and wanted, in the center of the picture being clearly adored by his or her siblings. I saw a child who was one of us, who would add his or her own unique spark to the group. I saw a child who would increase the depth and width of our family, who would be loved and cherished, who would contribute in his or her own way to our family and to the world.

I thought about the beautiful little girl who was laying in a tiny hospital bed, recovering from surgery, deserving every chance for a full and happy life, and needing us. I thought about the little girl who looked just like Sara did as a baby, the little girl who was most definitely one of us, who was already deeply loved, who would increase the depth and width of our family in ways too numerous to list, who would bring much more than her own unique spark to our family and to the world.

It's perfect, I thought. She is perfect for us. I couldn't imagine a more beautiful family picture than one with her in it...

2006

2007
2008
**To see a photo montage of our first two years with Bridget, go here.

***Stay tuned for Part II of this story...

I am Overwhelmed

...that so many people took the time to read and comment here yesterday.

For a tiny little blog like mine to get three or four times my usual daily number of visitors in just one day is...well...just a bit overwhelming.

Thank you to Jennifer and Pinwheels for sending folks our way.

Just like the tough times, waves of gratitude come unexpectedly. (I wrote about this in response to the tremendous amount of support we received through my brain surgery in '04 and during our first Buddy Walk last year. You can find that here.)

I started this blog and continue to post writing and pictures to show just how much we love and celebrate Bridget, and to help others see that a diagnosis of Down syndrome is far from the worst thing in the world. (I could keep it all for myself, but I feel selfish not sharing Bridget and all we have learned through knowing and loving her.)

I hoped that someone, somewhere would find this blog at a time when they really needed a boost.

I hoped that people who did not know someone with Ds would visit here and see my daughter--our love--and understand that she has potential and value just like everyone else.

I hoped that people in the "special needs" community would come here for information about Bridget's development and our experiences with her--as well as for support.

What I didn't expect was the incredible sense of connection I would develop with other parents traveling the same path. I didn't expect that I would be reading, almost daily, about other children and families who are working their way through so many of the same issues we're dealing with--that I'd be so invested in their lives and gaining so much myself. Thank you to everyone else who is searching, writing, learning, loving & sharing.

I am grateful for all of it...

I am Overwhelmed

...that so many people took the time to read and comment here yesterday.

For a tiny little blog like mine to get three or four times my usual daily number of visitors in just one day is...well...just a bit overwhelming.

Thank you to Jennifer and Pinwheels for sending folks our way.

Just like the tough times, waves of gratitude come unexpectedly. (I wrote about this in response to the tremendous amount of support we received through my brain surgery in '04 and during our first Buddy Walk last year. You can find that here.)

I started this blog and continue to post writing and pictures to show just how much we love and celebrate Bridget, and to help others see that a diagnosis of Down syndrome is far from the worst thing in the world. (I could keep it all for myself, but I feel selfish not sharing Bridget and all we have learned through knowing and loving her.)

I hoped that someone, somewhere would find this blog at a time when they really needed a boost.

I hoped that people who did not know someone with Ds would visit here and see my daughter--our love--and understand that she has potential and value just like everyone else.

I hoped that people in the "special needs" community would come here for information about Bridget's development and our experiences with her--as well as for support.

What I didn't expect was the incredible sense of connection I would develop with other parents traveling the same path. I didn't expect that I would be reading, almost daily, about other children and families who are working their way through so many of the same issues we're dealing with--that I'd be so invested in their lives and gaining so much myself. Thank you to everyone else who is searching, writing, learning, loving & sharing.

I am grateful for all of it...

Best Friends Photo Shoot--Conny Wenk

In case you haven't had a chance to visit photographer Conny Wenk's blog recently, she's moved here. RUN, don't walk :)...to check out these incredible photos of best friends Tamara & Giuliana (both in 7th grade, both have Ds). These pictures highlight each girl's individual personality (or depth of dimension) & also their connectedness.

Conny has such a talent for capturing the sweetness of LIFE in her photos. They are vibrant and interesting and full of information about the subjects.

In the pictures of Tamara and Giuliana, we see two hip, fun-loving girls who happen to have Down syndrome. Both girls are stylish, love cell phones, laptop computers and listening to music on their IPods. In a few of the shots, the girls are in Starbucks hanging out and genuinely enjoying each other's company. Talk about blasting stereotypes...

Best Friends Photo Shoot--Conny Wenk

In case you haven't had a chance to visit photographer Conny Wenk's blog recently, she's moved here. RUN, don't walk :)...to check out these incredible photos of best friends Tamara & Giuliana (both in 7th grade, both have Ds). These pictures highlight each girl's individual personality (or depth of dimension) & also their connectedness.

Conny has such a talent for capturing the sweetness of LIFE in her photos. They are vibrant and interesting and full of information about the subjects.

In the pictures of Tamara and Giuliana, we see two hip, fun-loving girls who happen to have Down syndrome. Both girls are stylish, love cell phones, laptop computers and listening to music on their IPods. In a few of the shots, the girls are in Starbucks hanging out and genuinely enjoying each other's company. Talk about blasting stereotypes...

Living in a World of Possibility

In the past few days, I've seen several posts on other blogs which center around two basic issues many of us are dealing with: (1) finding the difficult balance between getting our children the help they need while never underestimating their potential, and (2) not being sad about the differences in our children or in our lives as the parents of a child with a disability. It's hard sometimes to be realistic and hopeful at the same time.

I've read about Amy making the decision to apply for handicapped parking permission for her daughter Larkin, how Ellen struggled with her application for a MR waiver for Nichole, and how Lisa ponders her son Finn's future and Ds stereotypes in response to the "Johnny the Bagger" story.

Parents protect their children fiercely. This is not unique to parenting a child with a disability. What is different is that our children are universally perceived as different--and as such, we feel the need to protect, even more fiercely, from the very beginning. Most of us are sensitive to images, language, and perspectives that have real power to limit our children (and to stomp on our hearts at the same time).

We are in a unique position. We do live in a "different world" in many ways. And although it's a world of many, many, untold blessings, it is also a world where questions, fears and soul-searching are part of the everyday landscape.

You might not see it often on Bridget's Light, but I have my tough days, too. We all have our moments when things seem out of control, overwhelming or filled with with uncertainty. It comes in waves. The waves were much bigger and flattened me a few times when Bridget was tiny. Today I'm finding that I don't have to jump nearly as high or as often to make it over them. As a family, we have found our center of balance, and have learned to accept and celebrate our lives as they are today. Jumping waves is much easier when you're holding hands with someone you love.

My goal with this blog has always been to share Bridget--and our experiences with her--with friends, family and anyone else who might benefit. I'm committed to finding ways of highlighting the importance of advocacy, keeping perspective and seeing possibility. To that end, I want to share the following:

Bridget was very small when we were first introduced to the Buddy Walk. We chose not to participate in the Buddy Walk that fall, but a friend brought us a bag with pamphlets, stickers, magnets and brochures that were given out that day. In it, I found a bright pink sheet of paper. Printed on it was the following story, which had great impact on me at the time. I found this again recently while I was re-organizing my file box for Bridget, and it still resonates with me deeply...

_________________________________________________

A Story about My Two Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

*Candee Basford is an author, artist, facilitator and independent consultant. She is president of Ohio TASH and active in capacity building approaches. She holds a Masters degree in adult education. Learn more about her and her daughter Katie here.

**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .

***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.

Living in a World of Possibility

In the past few days, I've seen several posts on other blogs which center around two basic issues many of us are dealing with: (1) finding the difficult balance between getting our children the help they need while never underestimating their potential, and (2) not being sad about the differences in our children or in our lives as the parents of a child with a disability. It's hard sometimes to be realistic and hopeful at the same time.

I've read about Amy making the decision to apply for handicapped parking permission for her daughter Larkin, how Ellen struggled with her application for a MR waiver for Nichole, and how Lisa ponders her son Finn's future and Ds stereotypes in response to the "Johnny the Bagger" story.

Parents protect their children fiercely. This is not unique to parenting a child with a disability. What is different is that our children are universally perceived as different--and as such, we feel the need to protect, even more fiercely, from the very beginning. Most of us are sensitive to images, language, and perspectives that have real power to limit our children (and to stomp on our hearts at the same time).

We are in a unique position. We do live in a "different world" in many ways. And although it's a world of many, many, untold blessings, it is also a world where questions, fears and soul-searching are part of the everyday landscape.

You might not see it often on Bridget's Light, but I have my tough days, too. We all have our moments when things seem out of control, overwhelming or filled with with uncertainty. It comes in waves. The waves were much bigger and flattened me a few times when Bridget was tiny. Today I'm finding that I don't have to jump nearly as high or as often to make it over them. As a family, we have found our center of balance, and have learned to accept and celebrate our lives as they are today. Jumping waves is much easier when you're holding hands with someone you love.

My goal with this blog has always been to share Bridget--and our experiences with her--with friends, family and anyone else who might benefit. I'm committed to finding ways of highlighting the importance of advocacy, keeping perspective and seeing possibility. To that end, I want to share the following:

Bridget was very small when we were first introduced to the Buddy Walk. We chose not to participate in the Buddy Walk that fall, but a friend brought us a bag with pamphlets, stickers, magnets and brochures that were given out that day. In it, I found a bright pink sheet of paper. Printed on it was the following story, which had great impact on me at the time. I found this again recently while I was re-organizing my file box for Bridget, and it still resonates with me deeply...

_________________________________________________

A Story about My Two Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

*Candee Basford is an author, artist, facilitator and independent consultant. She is president of Ohio TASH and active in capacity building approaches. She holds a Masters degree in adult education. Learn more about her and her daughter Katie here.

**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .

***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.

Sleeping Beauty...is sick

Our sweet little girl has been under the weather with a cold-type virus and a really bad ear infection.





She's been pretty miserable, but is starting to feel better. After days of existing on applesauce, Motrin and Hi-5 (and resisting naps/sleeping restlessly at night), she finally fell asleep...with me...on my bed.

She'd insisted on laying on me all afternoon...patting my arm (and cheek and leg) to say: "You just stay right here, please". After 3 hours, she fell asleep at last (I did, too). I woke up and grabbed my camera...she was just too cute all snuggled in our fuzzy throw blanket. Just FYI, I did not wake her up taking pics :), the phone rang :(. Notice the one eye open in the picture below.


We have another snow day today. It's beautiful outside and there's nowhere we have to go, so we are settling in together for an afternoon of movies and games (and probably more applesauce, Motrin and Hi-5)...

Sleeping Beauty...is sick

Our sweet little girl has been under the weather with a cold-type virus and a really bad ear infection.





She's been pretty miserable, but is starting to feel better. After days of existing on applesauce, Motrin and Hi-5 (and resisting naps/sleeping restlessly at night), she finally fell asleep...with me...on my bed.

She'd insisted on laying on me all afternoon...patting my arm (and cheek and leg) to say: "You just stay right here, please". After 3 hours, she fell asleep at last (I did, too). I woke up and grabbed my camera...she was just too cute all snuggled in our fuzzy throw blanket. Just FYI, I did not wake her up taking pics :), the phone rang :(. Notice the one eye open in the picture below.


We have another snow day today. It's beautiful outside and there's nowhere we have to go, so we are settling in together for an afternoon of movies and games (and probably more applesauce, Motrin and Hi-5)...

A New Year

We're still here...

My sister-in-law, Jennie, took these pictures of me & Bridget last week in Missouri (where we were visiting my parents for the holidays). I love this little girl SO MUCH! I need to pick one of these to submit for publication, and can't choose a favorite. Anyone else have thoughts or comments?

Happy 2009!

**Thanks to everyone who posted here or emailed me with feedback on the pictures. We selected the one on the top (of me brushing Bridget's hair out of her face), which is also our new header :).

A New Year

We're still here...

My sister-in-law, Jennie, took these pictures of me & Bridget last week in Missouri (where we were visiting my parents for the holidays). I love this little girl SO MUCH! I need to pick one of these to submit for publication, and can't choose a favorite. Anyone else have thoughts or comments?

Happy 2009!

**Thanks to everyone who posted here or emailed me with feedback on the pictures. We selected the one on the top (of me brushing Bridget's hair out of her face), which is also our new header :).

Thankful

It seems to be the way of the world these days: Be the best, brightest, biggest (whatever you're trying to be). I've often wondered...how does Down syndrome fit into a society so obsessed with beauty, success and perfection?

I don't have the answer to that question, but I have my own theory: knowing and loving Bridget keeps me from getting in the way of myself.

As Bridget's mom, I've stopped looking to others to help me gauge my own worth. I am no longer concerned with what others might be thinking about me. I am not self-conscious.

If I take my daughter's lead, I live Life jubilantly. I trust. I try. I love. I don't rush. I don't judge. I don't miss a thing.

Bridget is so full of Life and beauty--and Life with Bridget, in turn, is full of dimension and meaning.

Bridget embodies goodness and honesty. She is light and truth, and she reminds me daily--this is it--this is what Life is all about.

This love,
this joy~~
that arrived with Bridget.
The significance,
and brilliance
in our days.
The moments of discovery,
and reflection.
Moments of peace~~
and laughter~~
and light.

I am so thankful for this little girl, and for this beautiful journey...

Thankful

It seems to be the way of the world these days: Be the best, brightest, biggest (whatever you're trying to be). I've often wondered...how does Down syndrome fit into a society so obsessed with beauty, success and perfection?

I don't have the answer to that question, but I have my own theory: knowing and loving Bridget keeps me from getting in the way of myself.

As Bridget's mom, I've stopped looking to others to help me gauge my own worth. I am no longer concerned with what others might be thinking about me. I am not self-conscious.

If I take my daughter's lead, I live Life jubilantly. I trust. I try. I love. I don't rush. I don't judge. I don't miss a thing.

Bridget is so full of Life and beauty--and Life with Bridget, in turn, is full of dimension and meaning.

Bridget embodies goodness and honesty. She is light and truth, and she reminds me daily--this is it--this is what Life is all about.

This love,
this joy~~
that arrived with Bridget.
The significance,
and brilliance
in our days.
The moments of discovery,
and reflection.
Moments of peace~~
and laughter~~
and light.

I am so thankful for this little girl, and for this beautiful journey...

Ending one day and starting another...

I haven't posted yet in November, and the month is almost over. With the Buddy Walk in September and blogging each day of October for Ds awareness month, the three-week break was more than a little needed. I have been visiting other blogs when there has been a free moment, and I've loved having a chance to catch up on some good reading and inspiring dialogue.

My own advocacy efforts will be growing in scope over the upcoming year. I will share more as plans are finalized...

This past three weeks have been a bit of a blur. We've all been sick at one point or another with a variety of beginning-of-the-winter bugs (postponing our playdate with the Elliott's), and Chris has been out of town on business more than usual. The boys' basketball season started and school conferences have come and gone. Late at night, when the house has been quiet, I've started and finished my holiday shopping on-line. And now, more boxes are arriving than I can find space for.

Anyway, when Chris was gone recently, Sara slept in his spot. All the kids stay in the room with me when he's away, and the girls take turns sleeping next to me. The boys have an air bed on the floor, and there is another single bed on the floor for Emmy or Sara, whichever one is not with me.

There is a pack-n-play right next to my bed for Bridget, but she likes to snuggle as she falls asleep. I pulled her into bed with me and Sara the other night. She was sandwiched between us, all of our cheeks in a row. The three of us took up only the space in the middle of the bed. We fell asleep like that, together, with Sara's arms around Bridget, and my arms around Sara. Sometime in the middle of the night, I lifted Bridget from Sara's arms and laid her in the pack-n-play next to me.

In the morning, Bridget was the first to wake. I heard her tiny voice before daylight: "Mom Mom". I pulled her back into bed just as Sara's alarm sounded. Sara's eyes were still closed, but she sighed when she felt Bridget next to her. "What a great way to fall asleep and wake up...with this little girl beside me," she whispered.

Ending one day and starting another...

I haven't posted yet in November, and the month is almost over. With the Buddy Walk in September and blogging each day of October for Ds awareness month, the three-week break was more than a little needed. I have been visiting other blogs when there has been a free moment, and I've loved having a chance to catch up on some good reading and inspiring dialogue.

My own advocacy efforts will be growing in scope over the upcoming year. I will share more as plans are finalized...

This past three weeks have been a bit of a blur. We've all been sick at one point or another with a variety of beginning-of-the-winter bugs (postponing our playdate with the Elliott's), and Chris has been out of town on business more than usual. The boys' basketball season started and school conferences have come and gone. Late at night, when the house has been quiet, I've started and finished my holiday shopping on-line. And now, more boxes are arriving than I can find space for.

Anyway, when Chris was gone recently, Sara slept in his spot. All the kids stay in the room with me when he's away, and the girls take turns sleeping next to me. The boys have an air bed on the floor, and there is another single bed on the floor for Emmy or Sara, whichever one is not with me.

There is a pack-n-play right next to my bed for Bridget, but she likes to snuggle as she falls asleep. I pulled her into bed with me and Sara the other night. She was sandwiched between us, all of our cheeks in a row. The three of us took up only the space in the middle of the bed. We fell asleep like that, together, with Sara's arms around Bridget, and my arms around Sara. Sometime in the middle of the night, I lifted Bridget from Sara's arms and laid her in the pack-n-play next to me.

In the morning, Bridget was the first to wake. I heard her tiny voice before daylight: "Mom Mom". I pulled her back into bed just as Sara's alarm sounded. Sara's eyes were still closed, but she sighed when she felt Bridget next to her. "What a great way to fall asleep and wake up...with this little girl beside me," she whispered.