Sunday, October 26, 2008

Doing the Dreaming for Herself

When Bridget was born, Chris and I talked a lot about what her diagnosis meant in the scope of her life and in all of our lives. We knew things would be "different" than we'd anticipated, but we wondered, how different?

We were concerned foremost with her health. We decided we would learn whatever we could to advocate for her in every way we could. We agreed that we would focus on getting her well enough to come home. We discussed large issues like education, driving, and marriage.
Would Bridget be able to attend a regular school? Would she ever drive? Was marriage out of the question for her?

We also wondered about everyday life. Would she be sick often? How would raising her be different from raising the other kids? How would their lives be impacted? Would we be able to take family vacations? What about leaving the kids with a babysitter? Would we always be worried about Bridget?

The questions were endless at first, and the process is one we needed to go through to realize: things are not much different than what we anticipated when we found out we would be adding a new member to our family. The truth is, we never know what a child will be like, what he or she will require, achieve or struggle with. We never know if a child will be healthy, independent, happy, and so on. Who's to say if any of our children will drive, go to college, get married, or live independently. We really don't know at this point. We're not consumed by the need to know how it will all play out. And, honestly, the future for our children is not for us to plan out.

Once we'd talked through all these issues, Chris and I realized that many of these things are outside of our control, and what's most important to us is that our children are happy & able to contribute to the world in some way. Each one of us has a unique personality. We all have our issues and our strengths. We will all go through times when we require more attention or more support than usual. We all have something valuable to contribute.

With Bridget, we are learning to be hopeful without expectations. We have plans and goals to help Bridget in her growth and development, and while those plans are necessary and important--we cannot be tied to them. Bridget is on her own path, and will develop in her own ways on her own time. We can provide her experiences and exposure to things which may influence her development, but her own personality and abilities will dictate what she accomplishes and when.

We don’t want others to judge her against an arbitrary standard of development or of what’s acceptable. We’ve learned that we can’t do that either. There is a fine line between wanting the best for our children, and asking that they meet our ideal. Typical, healthy or not…we cannot dream for our children.

Just as we cannot control the development and interests of any of our other children, Bridget will become who she is. We’ll give her every type of support and encouragement to be as happy, healthy and independent as she can be, but we’ll let her do the dreaming for herself.

Doing the Dreaming for Herself

When Bridget was born, Chris and I talked a lot about what her diagnosis meant in the scope of her life and in all of our lives. We knew things would be "different" than we'd anticipated, but we wondered, how different?

We were concerned foremost with her health. We decided we would learn whatever we could to advocate for her in every way we could. We agreed that we would focus on getting her well enough to come home. We discussed large issues like education, driving, and marriage.
Would Bridget be able to attend a regular school? Would she ever drive? Was marriage out of the question for her?

We also wondered about everyday life. Would she be sick often? How would raising her be different from raising the other kids? How would their lives be impacted? Would we be able to take family vacations? What about leaving the kids with a babysitter? Would we always be worried about Bridget?

The questions were endless at first, and the process is one we needed to go through to realize: things are not much different than what we anticipated when we found out we would be adding a new member to our family. The truth is, we never know what a child will be like, what he or she will require, achieve or struggle with. We never know if a child will be healthy, independent, happy, and so on. Who's to say if any of our children will drive, go to college, get married, or live independently. We really don't know at this point. We're not consumed by the need to know how it will all play out. And, honestly, the future for our children is not for us to plan out.

Once we'd talked through all these issues, Chris and I realized that many of these things are outside of our control, and what's most important to us is that our children are happy & able to contribute to the world in some way. Each one of us has a unique personality. We all have our issues and our strengths. We will all go through times when we require more attention or more support than usual. We all have something valuable to contribute.

With Bridget, we are learning to be hopeful without expectations. We have plans and goals to help Bridget in her growth and development, and while those plans are necessary and important--we cannot be tied to them. Bridget is on her own path, and will develop in her own ways on her own time. We can provide her experiences and exposure to things which may influence her development, but her own personality and abilities will dictate what she accomplishes and when.

We don’t want others to judge her against an arbitrary standard of development or of what’s acceptable. We’ve learned that we can’t do that either. There is a fine line between wanting the best for our children, and asking that they meet our ideal. Typical, healthy or not…we cannot dream for our children.

Just as we cannot control the development and interests of any of our other children, Bridget will become who she is. We’ll give her every type of support and encouragement to be as happy, healthy and independent as she can be, but we’ll let her do the dreaming for herself.

Saturday, October 25, 2008

Audiences Across the Country Get the Message a Second Time

Sara is a dancer, and wanted desperately to see So You Think You Can Dance Live (on tour, and here in Columbus on the exact day of her 13th birthday). We surprised her with tickets.

A little surprise awaited us, also. As the show began, a video played on a large screen above the stage. SYTYCD co-creator Nigel Lythgoe introduced the top five most memorable auditions for the 2008 season. I started to tear up as soon as the clip started for memorable audition #4, which I immediately recognized as the Brett Banford audition. Most of us in the Ds community have seen it, but for anyone who hasn't, please click on the link here and watch the video of Banford's segment on the Disability News site (along with a partial transcript of the judges' comments).

In May, 25-year-old Banford appeared on national t.v. during prime time with the show's recap of the Salt Lake City auditions. He grooved on stage, and was clearly enjoying his time in the spotlight. With great composure and with a goal to "represent" for people with disabilities, Banford said after his performance, “I’m just here to prove to people that people with disabilities can actually have a normal life and live it. And that’s what I’m here to represent.” Amidst the whooping and hollering of the audience, he continued, “It’s not about winning or losing. It’s about having fun.”

I was completely thrilled--and more than a little overwhelmed--that his audition (and message) was getting another round of play to audiences around the country. Last Wednesday night, at the Jerome Schottenstein Center on the Ohio State campus, around 10,000 people watched Banford's clip. He got lots of applause while it played--and when it was over, the woman next to me leaned to her friend and said, "That was awesome." It truly was.

Big, big kudos to SYTYCD for highlighting Banford and his message once again. And big, big kudos to Brett. You make us all proud!

p.s. The live show was AWESOME. For fans, it was well worth the cost of tickets and being out late on a school night :).

Audiences Across the Country Get the Message a Second Time

Sara is a dancer, and wanted desperately to see So You Think You Can Dance Live (on tour, and here in Columbus on the exact day of her 13th birthday). We surprised her with tickets.

A little surprise awaited us, also. As the show began, a video played on a large screen above the stage. SYTYCD co-creator Nigel Lythgoe introduced the top five most memorable auditions for the 2008 season. I started to tear up as soon as the clip started for memorable audition #4, which I immediately recognized as the Brett Banford audition. Most of us in the Ds community have seen it, but for anyone who hasn't, please click on the link here and watch the video of Banford's segment on the Disability News site (along with a partial transcript of the judges' comments).

In May, 25-year-old Banford appeared on national t.v. during prime time with the show's recap of the Salt Lake City auditions. He grooved on stage, and was clearly enjoying his time in the spotlight. With great composure and with a goal to "represent" for people with disabilities, Banford said after his performance, “I’m just here to prove to people that people with disabilities can actually have a normal life and live it. And that’s what I’m here to represent.” Amidst the whooping and hollering of the audience, he continued, “It’s not about winning or losing. It’s about having fun.”

I was completely thrilled--and more than a little overwhelmed--that his audition (and message) was getting another round of play to audiences around the country. Last Wednesday night, at the Jerome Schottenstein Center on the Ohio State campus, around 10,000 people watched Banford's clip. He got lots of applause while it played--and when it was over, the woman next to me leaned to her friend and said, "That was awesome." It truly was.

Big, big kudos to SYTYCD for highlighting Banford and his message once again. And big, big kudos to Brett. You make us all proud!

p.s. The live show was AWESOME. For fans, it was well worth the cost of tickets and being out late on a school night :).

The Trouble with Dreams

It’s normal during a pregnancy to wonder what your child may be like (we all have thoughts and ideas, hopes and dreams about what our babies might be like). The trouble with this is, if the child--for whatever reason--doesn't match up to those dreams, are we then disappointed that the child did not fulfill our dream?

The Trouble with Dreams

It’s normal during a pregnancy to wonder what your child may be like (we all have thoughts and ideas, hopes and dreams about what our babies might be like). The trouble with this is, if the child--for whatever reason--doesn't match up to those dreams, are we then disappointed that the child did not fulfill our dream?

Friday, October 24, 2008

Advocacy Starts Early

We had an experience when Bridget was a new baby that made us realize that certain people would always sell her short because of her diagnosis. We sensed very early on that she was capable of far more than what we initially heard, and that--at the very least--she deserved for us to believe in her and to fight for her.

There was a surgical doctor in the NICU that kept referring to generalities in babies with Down syndrome when managing Bridget's hospital care. He was full of doubt, and had a general unwillingness to look at Bridget as an individual.

This particular doctor was certain that Bridget would struggle eating on her own. (My instincts told me the opposite. She sent me every signal she could that she was very interested in eating by mouth.)

When Bridget was less than two weeks old (35 1/2 weeks gestational age), the surgeon delivered a huge blow to our optimism as he said flatly, "These kids tend not to do well eating by mouth. I'd like your permission to pop a G-tube in her, and send her home."

This doctor wanted to surgically implant a feeding tube in her stomach based on trends and generalities--and stereotypes. I understood that his desire to release her from the hospital was due--at least in part--to both the high cost of intensive care, and risk of infection in the hospital setting. She had almost completely recovered from her surgery, and since she was no longer a "surgical patient", he felt she should be released. He was ready to give up on her, we were not.

Chris and I felt that Bridget needed--and deserved--at least a little more time in the monitored hospital environment to grow and to work on feeding. She was a preemie, who was having brief spells of Bradycardia (decreased heart rate) and was still over a week away from being considered full-term. Still, she was showing promising signs, and her due date was not for another month.

The sucking reflex, as well as her stamina and alertness, would all likely improve as we got closer to the full-term mark.

We did not give the surgeon permission to insert the G-tube. Instead, we laid out a plan for increasing Bridget's feeds by mouth and began working with the Nutritionist and Occupational Therapists at the hospital to accomplish this. We were moved to a family-centered unit where I could room-in with Bridget and be there to feed her every time. She and I worked tirelessly for two and a half weeks, making steady progress all along. Our combined love and determination paid off. We left the hospital just over a week before Bridget's original due date on full feeds by mouth, and without tubes or monitors of any kind.


**Not all health care professionals were negative about Bridget's prognosis. We received encouragement from multiple doctors, nurses and therapists while at the hospital. We were blessed with a neonatologist who delivered Bridget's diagnosis thoroughly, and with great care and concern. We also have a wonderful pediatrician, a treasured and trusted friend and doctor, who approaches her job with compassion and creativity. She has always believed in Bridget, and in us.

**A major factor in determining when Bridget could be released from the hospital was that she needed take at least 1 1/2 ounce per feeding and show that she was gaining weight. Since she was expending so much energy just to eat, the surgeon mentioned above was convinced that even if she could take the required amount--by mouth--each time, that there was virtually no way she would gain weight.

I nursed all of our children and had tried nursing Bridget. Her swallow was not fully developed and we had to thicken her feeds, so she could not nurse directly from me. I was expressing my milk for her. I researched her nutritional requirements and found out that we could use hindmilk (rather than NeoSure) to boost her caloric intake. Basically, this is where the milk is collected in two parts (the beginning until just about two minutes after let-down, when most of the milk is emptied, and the end, when the milk is richest). The baby is then fed the latter portion, and the "foremilk" is stored for later use. I think this made a big difference in meeting the weight-gaining goal.

Advocacy Starts Early

We had an experience when Bridget was a new baby that made us realize that certain people would always sell her short because of her diagnosis. We sensed very early on that she was capable of far more than what we initially heard, and that--at the very least--she deserved for us to believe in her and to fight for her.

There was a surgical doctor in the NICU that kept referring to generalities in babies with Down syndrome when managing Bridget's hospital care. He was full of doubt, and had a general unwillingness to look at Bridget as an individual.

This particular doctor was certain that Bridget would struggle eating on her own. (My instincts told me the opposite. She sent me every signal she could that she was very interested in eating by mouth.)

When Bridget was less than two weeks old (35 1/2 weeks gestational age), the surgeon delivered a huge blow to our optimism as he said flatly, "These kids tend not to do well eating by mouth. I'd like your permission to pop a G-tube in her, and send her home."

This doctor wanted to surgically implant a feeding tube in her stomach based on trends and generalities--and stereotypes. I understood that his desire to release her from the hospital was due--at least in part--to both the high cost of intensive care, and risk of infection in the hospital setting. She had almost completely recovered from her surgery, and since she was no longer a "surgical patient", he felt she should be released. He was ready to give up on her, we were not.

Chris and I felt that Bridget needed--and deserved--at least a little more time in the monitored hospital environment to grow and to work on feeding. She was a preemie, who was having brief spells of Bradycardia (decreased heart rate) and was still over a week away from being considered full-term. Still, she was showing promising signs, and her due date was not for another month.

The sucking reflex, as well as her stamina and alertness, would all likely improve as we got closer to the full-term mark.

We did not give the surgeon permission to insert the G-tube. Instead, we laid out a plan for increasing Bridget's feeds by mouth and began working with the Nutritionist and Occupational Therapists at the hospital to accomplish this. We were moved to a family-centered unit where I could room-in with Bridget and be there to feed her every time. She and I worked tirelessly for two and a half weeks, making steady progress all along. Our combined love and determination paid off. We left the hospital just over a week before Bridget's original due date on full feeds by mouth, and without tubes or monitors of any kind.


**Not all health care professionals were negative about Bridget's prognosis. We received encouragement from multiple doctors, nurses and therapists while at the hospital. We were blessed with a neonatologist who delivered Bridget's diagnosis thoroughly, and with great care and concern. We also have a wonderful pediatrician, a treasured and trusted friend and doctor, who approaches her job with compassion and creativity. She has always believed in Bridget, and in us.

**A major factor in determining when Bridget could be released from the hospital was that she needed take at least 1 1/2 ounce per feeding and show that she was gaining weight. Since she was expending so much energy just to eat, the surgeon mentioned above was convinced that even if she could take the required amount--by mouth--each time, that there was virtually no way she would gain weight.

I nursed all of our children and had tried nursing Bridget. Her swallow was not fully developed and we had to thicken her feeds, so she could not nurse directly from me. I was expressing my milk for her. I researched her nutritional requirements and found out that we could use hindmilk (rather than NeoSure) to boost her caloric intake. Basically, this is where the milk is collected in two parts (the beginning until just about two minutes after let-down, when most of the milk is emptied, and the end, when the milk is richest). The baby is then fed the latter portion, and the "foremilk" is stored for later use. I think this made a big difference in meeting the weight-gaining goal.

Thursday, October 23, 2008

Perfect

"Perfect" is subjective, not objective. It is not one arbitrary standard—what’s perfect depends on the viewer and the view.

Perfect

"Perfect" is subjective, not objective. It is not one arbitrary standard—what’s perfect depends on the viewer and the view.

Wednesday, October 22, 2008

Sara's Birthday

I looked at Sara leaving for school the other day--all put together, like she always is--and saw her walking straight out of my arms.

Today, Sara is thirteen--a teenager. How? I remember holding her in my arms for the first time like it was yesterday. She's in 7th grade--a young lady now--responsible, creative, ambitious, and honest. She's grown tall enough to look me in the eye and has already grown out of my shoes. I can feel her slipping out of my reach (we'll both cry when we read this).

She left today and Bridget was in my arms with her nose against mine. She was smiling sweetly and patting my back as if to say, Its going to be okay, mom. I pulled her closer and held on tight...for a long time.

Bridget is our last, and her taking longer to grow up has been a surprise gift. We're seeing steady progress--and the same stages of development in her that all the other kids went through--its just that some of the phases are elongated. She's two now, and most two-year-olds are already full-blown toddlers beginning to stretch away clearly from the "baby" phase. Bridget still smells like a baby. She's soft and warm and sweet. She gets everywhere she wants to go and has an independent streak, but she is not really walking yet. I know it won't be long before she is off and running. I've had her in my arms a little longer than the others, and truthfully, I'm enjoying this time.

Sara is fully entrenched in adolescence and all the ups and downs of teenage life. She's starting to build a life of her own. And one day, she'll leave to pursue that life on her own. And the rest of the kids will, in turn, leave on their own schedule and in their own ways. Bridget, too, I'm betting...but not for a while still. For now, she's my Lovebug, my Band-Aid, my tiny companion.

My precious oldest, my precious youngest--looking at the two of them today, I realized that I'm being eased into the gradual leaving process, and I have Bridget to soothe and comfort me throughout.

My thoughts today are a little bittersweet, but mostly I'm thinking of how much I love these children of mine--all of them--forever & ever.


p.s. Happy Birthday and lots of love also to Uncle Sid, Sally & Pops!

Sara's Birthday

I looked at Sara leaving for school the other day--all put together, like she always is--and saw her walking straight out of my arms.

Today, Sara is thirteen--a teenager. How? I remember holding her in my arms for the first time like it was yesterday. She's in 7th grade--a young lady now--responsible, creative, ambitious, and honest. She's grown tall enough to look me in the eye and has already grown out of my shoes. I can feel her slipping out of my reach (we'll both cry when we read this).

She left today and Bridget was in my arms with her nose against mine. She was smiling sweetly and patting my back as if to say, Its going to be okay, mom. I pulled her closer and held on tight...for a long time.

Bridget is our last, and her taking longer to grow up has been a surprise gift. We're seeing steady progress--and the same stages of development in her that all the other kids went through--its just that some of the phases are elongated. She's two now, and most two-year-olds are already full-blown toddlers beginning to stretch away clearly from the "baby" phase. Bridget still smells like a baby. She's soft and warm and sweet. She gets everywhere she wants to go and has an independent streak, but she is not really walking yet. I know it won't be long before she is off and running. I've had her in my arms a little longer than the others, and truthfully, I'm enjoying this time.

Sara is fully entrenched in adolescence and all the ups and downs of teenage life. She's starting to build a life of her own. And one day, she'll leave to pursue that life on her own. And the rest of the kids will, in turn, leave on their own schedule and in their own ways. Bridget, too, I'm betting...but not for a while still. For now, she's my Lovebug, my Band-Aid, my tiny companion.

My precious oldest, my precious youngest--looking at the two of them today, I realized that I'm being eased into the gradual leaving process, and I have Bridget to soothe and comfort me throughout.

My thoughts today are a little bittersweet, but mostly I'm thinking of how much I love these children of mine--all of them--forever & ever.


p.s. Happy Birthday and lots of love also to Uncle Sid, Sally & Pops!

Tuesday, October 21, 2008

I Can Bring Home the Bacon...

Columnist and speaker Lori Borgman is hilarious. Her commentary on contemporary life is not only funny, it is directly on point.

Borgman's article "Give us a break, Supersarah" begins, "Sarah Palin exhausts me. Watching her on the tube makes me certain I have iron-poor blood. Staring at all that abounding confidence and endless energy, I grow weaker by the moment." She later adds, "If I find out she bakes her own bread, I may hurt myself."

Politics aside, this article is just plain funny. And, in the end, there's a little plug for the "special needs parents" among us. Check it out.

***

Sarah Palin has been criticized for being on the campaign trail. People across the country have taken it upon themselves to comment and pass judgement on her for everything from her hairstyle to her job as a mother, as well as on many other topics which have little to do with the political landscape of this country. I assume she is a woman who cares about her family and has help with the kids. She has a job, and a family, and is serving this country.

***

Remember the 70's Enjoli perfume commercial with it's catchy theme song "I can bring home the bacon, fry it up in a pan, and never, never let you forget you're a man...'cause I'm a woman..." It was the height of feminism, and the song was a rally cry for women everywhere to understand: yes, we can be it all, do it all, & have it all.

Women, men and kids alike are pressed to do (and be) more than ever now. We all do the best we can with what we have, but the challenge to "do it all" flawlessly is larger than ever--for all of us.


**Lori Borgman also wrote "Some Mothers Get Babies with Something More", which is widely circulated among parents of children with a disability diagnosis.

For more, visit Lori Borgman's blog.

I Can Bring Home the Bacon...

Columnist and speaker Lori Borgman is hilarious. Her commentary on contemporary life is not only funny, it is directly on point.

Borgman's article "Give us a break, Supersarah" begins, "Sarah Palin exhausts me. Watching her on the tube makes me certain I have iron-poor blood. Staring at all that abounding confidence and endless energy, I grow weaker by the moment." She later adds, "If I find out she bakes her own bread, I may hurt myself."

Politics aside, this article is just plain funny. And, in the end, there's a little plug for the "special needs parents" among us. Check it out.

***

Sarah Palin has been criticized for being on the campaign trail. People across the country have taken it upon themselves to comment and pass judgement on her for everything from her hairstyle to her job as a mother, as well as on many other topics which have little to do with the political landscape of this country. I assume she is a woman who cares about her family and has help with the kids. She has a job, and a family, and is serving this country.

***

Remember the 70's Enjoli perfume commercial with it's catchy theme song "I can bring home the bacon, fry it up in a pan, and never, never let you forget you're a man...'cause I'm a woman..." It was the height of feminism, and the song was a rally cry for women everywhere to understand: yes, we can be it all, do it all, & have it all.

Women, men and kids alike are pressed to do (and be) more than ever now. We all do the best we can with what we have, but the challenge to "do it all" flawlessly is larger than ever--for all of us.


**Lori Borgman also wrote "Some Mothers Get Babies with Something More", which is widely circulated among parents of children with a disability diagnosis.

For more, visit Lori Borgman's blog.

Monday, October 20, 2008

More to Love

Bridget's extra chromosome translates into so much extra in all of our lives. We were talking yesterday afternoon about all the cute and funny things she does that make us smile. Adding to the previous list, here are 21 more things we love about Bridget:

1. She does a great "shoulder shimmy"--what two-year-old does this ? It's hilarious. :)

2. She "ROCKS OUT". (When she likes a song, she pumps her fists in the air, nods her head and makes "pouty lips"). Again...hilarious!

3. She likes to lay on her tummy to watch t.v., with her elbows on the floor resting her little face in her hands.

4. She sits in the stairwell and shouts for Daddy, "Da! Da!"

5. She's super enthusiastic about ice cream. She signs "ice cream" and "more" the whole time she's eating it.

6. When we ask her, "Would you like this?" (She signs "yes"). We ask, "You do?" She answers with the sweetest little, "Dooo!"

7. She can be "quiet as a mouse" (with her index finger to her lips "SHHH!"). This doesn't usually last for long.

8. She claps and yells when the crowd cheers at Kyle's football games.

9. I love it when I walk around the corner into the family room and see Bridget and one of the kids sitting on the couch listening to an iPod--each with one earbud, smiling and bopping to the music.

10. Bridget signs "banana" for her Nana :).

11. Anyone sitting at our house should prepare to have Bridget on their lap. She assumes no one minds if she climbs up and straddles them, or backs into their lap.

12. She tries to throw ping pong balls into the basketball hoop in our basement. Ping pong balls are lighter than air and Bridget is super short, so her shots go up about 12-18 inches. That doesn't stop her from trying, though. Good luck with that, Bridget :)!

13. She will remove hats or sunglasses from anyone within reach. She will immediately give them back, but will take them off again if given a chance.

14. She loves to take turns.

15. She always wakes up happy, and wants to snuggle before she gets going.

16. She likes to close any cupboard, drawer or door left open...that includes the trash compactor.

17. She goes to the front door every morning to wave good-bye to the kids before they get on the bus. Recently, she has started standing in the doorway. I love the look on the kids' faces when they look back to see her smiling and waving.

18. She's the clean-up crew/choking hazard police. She finds small objects or crumbs on the floor and hands them over. It's like, "Here, I'm not supposed to have this" or "This is not supposed to be on the floor". She'll come all the way across the first floor to hand me a speck-sized pencil shaving or a piece of dried macaroni :).

19. She always burps when asked. If I'm ever not sure where she's gone, I'll say, "Bridget can you burp?" It's so loud, there is no question as to her location...and I am hard of hearing :). If she burps for real and on accident, she clasps her hands at her chest then leans forward and giggles before unleashing another contrived belch. I thought only 8 year old boys found burps to be so funny.

20. She does everything else we ask her to do only when she wants to.

21. She hums while she plays.

More to Love

Bridget's extra chromosome translates into so much extra in all of our lives. We were talking yesterday afternoon about all the cute and funny things she does that make us smile. Adding to the previous list, here are 21 more things we love about Bridget:

1. She does a great "shoulder shimmy"--what two-year-old does this ? It's hilarious. :)

2. She "ROCKS OUT". (When she likes a song, she pumps her fists in the air, nods her head and makes "pouty lips"). Again...hilarious!

3. She likes to lay on her tummy to watch t.v., with her elbows on the floor resting her little face in her hands.

4. She sits in the stairwell and shouts for Daddy, "Da! Da!"

5. She's super enthusiastic about ice cream. She signs "ice cream" and "more" the whole time she's eating it.

6. When we ask her, "Would you like this?" (She signs "yes"). We ask, "You do?" She answers with the sweetest little, "Dooo!"

7. She can be "quiet as a mouse" (with her index finger to her lips "SHHH!"). This doesn't usually last for long.

8. She claps and yells when the crowd cheers at Kyle's football games.

9. I love it when I walk around the corner into the family room and see Bridget and one of the kids sitting on the couch listening to an iPod--each with one earbud, smiling and bopping to the music.

10. Bridget signs "banana" for her Nana :).

11. Anyone sitting at our house should prepare to have Bridget on their lap. She assumes no one minds if she climbs up and straddles them, or backs into their lap.

12. She tries to throw ping pong balls into the basketball hoop in our basement. Ping pong balls are lighter than air and Bridget is super short, so her shots go up about 12-18 inches. That doesn't stop her from trying, though. Good luck with that, Bridget :)!

13. She will remove hats or sunglasses from anyone within reach. She will immediately give them back, but will take them off again if given a chance.

14. She loves to take turns.

15. She always wakes up happy, and wants to snuggle before she gets going.

16. She likes to close any cupboard, drawer or door left open...that includes the trash compactor.

17. She goes to the front door every morning to wave good-bye to the kids before they get on the bus. Recently, she has started standing in the doorway. I love the look on the kids' faces when they look back to see her smiling and waving.

18. She's the clean-up crew/choking hazard police. She finds small objects or crumbs on the floor and hands them over. It's like, "Here, I'm not supposed to have this" or "This is not supposed to be on the floor". She'll come all the way across the first floor to hand me a speck-sized pencil shaving or a piece of dried macaroni :).

19. She always burps when asked. If I'm ever not sure where she's gone, I'll say, "Bridget can you burp?" It's so loud, there is no question as to her location...and I am hard of hearing :). If she burps for real and on accident, she clasps her hands at her chest then leans forward and giggles before unleashing another contrived belch. I thought only 8 year old boys found burps to be so funny.

20. She does everything else we ask her to do only when she wants to.

21. She hums while she plays.

Sunday, October 19, 2008

Important Reading for New Parents and Beyond


For anyone who hasn't seen this from the National Down Syndrome Congress...it is well worth reading:


A Baby is a Baby First


Important Reading for New Parents and Beyond


For anyone who hasn't seen this from the National Down Syndrome Congress...it is well worth reading:


A Baby is a Baby First


Saturday, October 18, 2008

What Not to Say

One day last fall, Bridget and I went shopping while the kids were at school. She was extra loud in her stroller that day--not fussy, just making all kinds of noise. The store was virtually empty, so I was sure we weren't bothering anyone.

I wasn't surprised when we went up to check out and the clerk said with a smile, "Boy, someone sure has a lot to say today!" I smiled back, "Yes, she does." Without missing a beat, she replied, "My uncle was a Down's. He died."

I was more than stunned, and I'm pretty sure my mouth was hanging wide open because she continued quickly, "Oh, he was like 65 years old when he died a few years ago. We all loved him a lot."

I've seen this woman many times at the same store. She's always friendly, and I know she didn't intend to seem insensitive...more likely the opposite.

I'm always amazed to hear things like "He was a Down's"--and I hear variations of that statement often. It always stings a little, but not like it did when Bridget was small, and when I wasn't sure what to make of many things people said about her.

The woman in the store probably had no idea how her statement made me feel, as most people who use "outdated language" do not realize what they are really saying.

I 'd love for others to begin to understand that disability is natural, and that all people (regardless of appearance or ability) should be treated with respect and dignity.

Down syndrome is a medical diagnosis--a condition--that is part of a person at conception. Referring to Bridget as "a Down's," or as "a Down syndrome child," is loaded with stereotype and inherent discrimination, even if not intended. It suggests that Ds is the most important part of Bridget, that somehow she is Down syndrome.

Down syndrome is not a disease. Bridget does not "suffer" from it. She is not a "Down's", a "Down's baby", or a "Down syndrome child". She is a child...a beautiful and amazing little girl with an extra chromosome. She has Down syndrome.

The current thought in the United States is that "Down syndrome", or "Ds" (both with a lowercase /s/ in syndrome), is correct. "Down's syndrome" is not. To shorten, I've heard some people say "She has Down". I don't know if that is considered "correct" or not...but I think it sounds strange.

Here's a link to Kids Together, Inc., a non-profit organization which provides information and resources for children and adults with disabilities--where you can find information on People First Language among other important topics.

What Not to Say

One day last fall, Bridget and I went shopping while the kids were at school. She was extra loud in her stroller that day--not fussy, just making all kinds of noise. The store was virtually empty, so I was sure we weren't bothering anyone.

I wasn't surprised when we went up to check out and the clerk said with a smile, "Boy, someone sure has a lot to say today!" I smiled back, "Yes, she does." Without missing a beat, she replied, "My uncle was a Down's. He died."

I was more than stunned, and I'm pretty sure my mouth was hanging wide open because she continued quickly, "Oh, he was like 65 years old when he died a few years ago. We all loved him a lot."

I've seen this woman many times at the same store. She's always friendly, and I know she didn't intend to seem insensitive...more likely the opposite.

I'm always amazed to hear things like "He was a Down's"--and I hear variations of that statement often. It always stings a little, but not like it did when Bridget was small, and when I wasn't sure what to make of many things people said about her.

The woman in the store probably had no idea how her statement made me feel, as most people who use "outdated language" do not realize what they are really saying.

I 'd love for others to begin to understand that disability is natural, and that all people (regardless of appearance or ability) should be treated with respect and dignity.

Down syndrome is a medical diagnosis--a condition--that is part of a person at conception. Referring to Bridget as "a Down's," or as "a Down syndrome child," is loaded with stereotype and inherent discrimination, even if not intended. It suggests that Ds is the most important part of Bridget, that somehow she is Down syndrome.

Down syndrome is not a disease. Bridget does not "suffer" from it. She is not a "Down's", a "Down's baby", or a "Down syndrome child". She is a child...a beautiful and amazing little girl with an extra chromosome. She has Down syndrome.

The current thought in the United States is that "Down syndrome", or "Ds" (both with a lowercase /s/ in syndrome), is correct. "Down's syndrome" is not. To shorten, I've heard some people say "She has Down". I don't know if that is considered "correct" or not...but I think it sounds strange.

Here's a link to Kids Together, Inc., a non-profit organization which provides information and resources for children and adults with disabilities--where you can find information on People First Language among other important topics.