I've Been Hit...by a Prize Dart

Cheri at Raising Reid has given me a Premios Dardos blog award. It is my first blog award. Thank you, Cheri!

Premios Dardos means “prize darts” in Italian. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

And in the spirit of passing along the love, here's how it works:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: tag - eight other bloggers to do the same, remembering to contact each of them to let them know they have been selected for this award.

1) What are you wearing right now?

This question is a little creepy. I'm changing it to: What is your favorite thing to wear?

Pajamas.

2) What is your biggest fear?

Choking, me or anyone else.

3) Do you nap a lot?

Seriously?

4) Who is the last person you hugged?

Chris. Yesterday was our 16th wedding anniversary. (We hug on regular days, too.)

5) What websites do you visit when you go online?

All of the blogs I love! Other drop-downs on my address bar right now: The Columbus Metropolitan Library, Picnik, Merriam-Webster online, Sephora.

6) What was the last item you bought?

Groceries, honestly. It's the story of my life. Keeping this group fed is a full-time job. Personal item: A few days ago I ordered a LORAC Eye Shadow Palette from Sephora. I don't even really wear eye shadow, but Sara talked me into it. She talks me into a lot of things she'd like to "borrow" (permanently).

7) If you could go anywhere in the world, where would you go?

There are so many places around the world I'd love to visit someday (Greece, Italy, Laos, Costa Rica). But there's this little cove across from the Harbor Town Lighthouse in Hilton Head, S.C. where we go to find seashells and watch the dolphins play. It is our secret spot, and it is heaven on earth as far as I'm concerned. (Cheri, we honeymooned in Carmel, CA...it is beautiful!)

8) If you could go to the Oscars, who would you want to sit next to?

Someone quiet and preferably not drunk. I also wouldn't mind sitting between a dateless George Clooney and a dateless Brad Pitt :).

9) Has a celebrity's hair cut ever influenced your own hairstyle?

I have no idea why anyone would care to know this, but in the mid '90s, I tried to wear my hair in a short bob like Teri Hatcher's when she was in Lois & Clark: The New Adventures of Superman. Not a particularly good look for me.

10) I'm reinstating this question because I have so many to choose from: What is your most embarrassing moment?

The first day of spring quarter my freshman year in college, my roommate and I attended our first meeting for a class called Physics 101.1, Vibrations and Waves. (That in itself is not embarrassing, although my final grade in the course might have been.) For some reason, the professor showed a video that first day, and needed someone to turn the lights off. I knew he was going to call on me, since I'd purposefully taken a seat at the back of the room where I could sit without being noticed. You, in the pink shirt, could you please turn the lights off? he called out. I'd swear every single person in the room glanced over. I was seriously re-thinking my decision to wear that clingy white cotton mini-skirt (yeah, with white Reebok high-top tennies and an off-the-shoulder-shirt...gotta love the '80s). I smiled and stood up to get the lights, but I had a sinking feeling something was a little off. When I sat back down, my roommate leaned over and whispered, Your entire mini-skirt is stuck in your butt crack.

11) What was the last movie you watched?

In a theater: Gran Torino (awesome). In reality: That new Nickelodeon movie/musical Spectacular (not awesome).

12) What is the luckiest thing that ever happened to you?

That's easy. Meeting Chris.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do?

Again, seriously? I wouldn't know what to do with myself. I know that I wouldn't want to spend the whole day alone (maybe a few hours, though). My dream day would be to spend a whole 24 hours with people I love, but with no responsibilities (i.e., no dishes, no laundry, no cutting out Box Tops for Education, etc.).

14) Is there a major goal you have that you haven't yet achieved?

Singing & dancing on Broadway.

15) Drinks are on the house!! What do you order?

Dark beer. For real. There's only one frou-frou drink I like and it's called an Amazon Monkey or a Midori Splice...it's Midori, coconut rum and pineapple juice.

16) If you were in a terrible accident and your doctors told you they could save either your hearing or your sight (but not both), which would you choose and why?

It would be very hard to live without hearing the voices and laughter of my children, and without music. Not being able to see would be scary, but the way things look aren't as important to me as they way they sound, smell or feel. (I actually asked someone this question just a few weeks before I was diagnosed with a very large brain tumor. The surgery to remove the tumor was successful, but the tumor wasn't the only thing gone when I awoke. The surgery also took my hearing on the right side. Thankfully, I can still hear perfectly out of my left.)

17) What is something that those in blogland might not know about you?

I once gave a speech on catalytic converters and the pollution factor...in German. However, in case Conny Wenk sees this, I can no longer speak fluent German (you lose it when you don't use it!), but my reading comprehension is still pretty good :).

There are so many blogs out there that I truly enjoy for a variety of reasons. The following bloggers possess distinctive voices, and their blogs make me think, laugh, cry or nod in agreement. (I’m passing the award on to others I feel deserve it. If this is a duplicate award, consider yourself extra awesome. If you do not participate in memes, or similar activities--or if you aren’t comfortable acknowledging or passing it on--I won't mind at all, just know that I appreciate your efforts & your thoughts...)

Now for the love, in no particular order...

Anne at Archie's Room
Amy at Larkin's Place
Amy at One Day at a Time
Dan at Daniel Drinker
Will at Daniel Drinker
Mary at Everyday Elliott
Chrystal at One More, More Than One
Linda at Lila's Miracle Life

I've Been Hit...by a Prize Dart

Cheri at Raising Reid has given me a Premios Dardos blog award. It is my first blog award. Thank you, Cheri!

Premios Dardos means “prize darts” in Italian. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

And in the spirit of passing along the love, here's how it works:

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: tag - eight other bloggers to do the same, remembering to contact each of them to let them know they have been selected for this award.

1) What are you wearing right now?

This question is a little creepy. I'm changing it to: What is your favorite thing to wear?

Pajamas.

2) What is your biggest fear?

Choking, me or anyone else.

3) Do you nap a lot?

Seriously?

4) Who is the last person you hugged?

Chris. Yesterday was our 16th wedding anniversary. (We hug on regular days, too.)

5) What websites do you visit when you go online?

All of the blogs I love! Other drop-downs on my address bar right now: The Columbus Metropolitan Library, Picnik, Merriam-Webster online, Sephora.

6) What was the last item you bought?

Groceries, honestly. It's the story of my life. Keeping this group fed is a full-time job. Personal item: A few days ago I ordered a LORAC Eye Shadow Palette from Sephora. I don't even really wear eye shadow, but Sara talked me into it. She talks me into a lot of things she'd like to "borrow" (permanently).

7) If you could go anywhere in the world, where would you go?

There are so many places around the world I'd love to visit someday (Greece, Italy, Laos, Costa Rica). But there's this little cove across from the Harbor Town Lighthouse in Hilton Head, S.C. where we go to find seashells and watch the dolphins play. It is our secret spot, and it is heaven on earth as far as I'm concerned. (Cheri, we honeymooned in Carmel, CA...it is beautiful!)

8) If you could go to the Oscars, who would you want to sit next to?

Someone quiet and preferably not drunk. I also wouldn't mind sitting between a dateless George Clooney and a dateless Brad Pitt :).

9) Has a celebrity's hair cut ever influenced your own hairstyle?

I have no idea why anyone would care to know this, but in the mid '90s, I tried to wear my hair in a short bob like Teri Hatcher's when she was in Lois & Clark: The New Adventures of Superman. Not a particularly good look for me.

10) I'm reinstating this question because I have so many to choose from: What is your most embarrassing moment?

The first day of spring quarter my freshman year in college, my roommate and I attended our first meeting for a class called Physics 101.1, Vibrations and Waves. (That in itself is not embarrassing, although my final grade in the course might have been.) For some reason, the professor showed a video that first day, and needed someone to turn the lights off. I knew he was going to call on me, since I'd purposefully taken a seat at the back of the room where I could sit without being noticed. You, in the pink shirt, could you please turn the lights off? he called out. I'd swear every single person in the room glanced over. I was seriously re-thinking my decision to wear that clingy white cotton mini-skirt (yeah, with white Reebok high-top tennies and an off-the-shoulder-shirt...gotta love the '80s). I smiled and stood up to get the lights, but I had a sinking feeling something was a little off. When I sat back down, my roommate leaned over and whispered, Your entire mini-skirt is stuck in your butt crack.

11) What was the last movie you watched?

In a theater: Gran Torino (awesome). In reality: That new Nickelodeon movie/musical Spectacular (not awesome).

12) What is the luckiest thing that ever happened to you?

That's easy. Meeting Chris.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do?

Again, seriously? I wouldn't know what to do with myself. I know that I wouldn't want to spend the whole day alone (maybe a few hours, though). My dream day would be to spend a whole 24 hours with people I love, but with no responsibilities (i.e., no dishes, no laundry, no cutting out Box Tops for Education, etc.).

14) Is there a major goal you have that you haven't yet achieved?

Singing & dancing on Broadway.

15) Drinks are on the house!! What do you order?

Dark beer. For real. There's only one frou-frou drink I like and it's called an Amazon Monkey or a Midori Splice...it's Midori, coconut rum and pineapple juice.

16) If you were in a terrible accident and your doctors told you they could save either your hearing or your sight (but not both), which would you choose and why?

It would be very hard to live without hearing the voices and laughter of my children, and without music. Not being able to see would be scary, but the way things look aren't as important to me as they way they sound, smell or feel. (I actually asked someone this question just a few weeks before I was diagnosed with a very large brain tumor. The surgery to remove the tumor was successful, but the tumor wasn't the only thing gone when I awoke. The surgery also took my hearing on the right side. Thankfully, I can still hear perfectly out of my left.)

17) What is something that those in blogland might not know about you?

I once gave a speech on catalytic converters and the pollution factor...in German. However, in case Conny Wenk sees this, I can no longer speak fluent German (you lose it when you don't use it!), but my reading comprehension is still pretty good :).

There are so many blogs out there that I truly enjoy for a variety of reasons. The following bloggers possess distinctive voices, and their blogs make me think, laugh, cry or nod in agreement. (I’m passing the award on to others I feel deserve it. If this is a duplicate award, consider yourself extra awesome. If you do not participate in memes, or similar activities--or if you aren’t comfortable acknowledging or passing it on--I won't mind at all, just know that I appreciate your efforts & your thoughts...)

Now for the love, in no particular order...

Anne at Archie's Room
Amy at Larkin's Place
Amy at One Day at a Time
Dan at Daniel Drinker
Will at Daniel Drinker
Mary at Everyday Elliott
Chrystal at One More, More Than One
Linda at Lila's Miracle Life

Dancing Queen

Bridget loves the Mamma Mia! soundtrack. Emmy left her CD player on the floor behind the family room couch, and guess where I found Bridget yesterday morning? She had pushed the play button, so I heard the music (and her singing ooh bop bop) before I actually saw her dancing to "Honey, Honey". Go Bridget! I *heart* this little girl so much!

Dancing Queen

Bridget loves the Mamma Mia! soundtrack. Emmy left her CD player on the floor behind the family room couch, and guess where I found Bridget yesterday morning? She had pushed the play button, so I heard the music (and her singing ooh bop bop) before I actually saw her dancing to "Honey, Honey". Go Bridget! I *heart* this little girl so much!

Pictures of Bridget at 30 Months

Late afternoon sunshine and a sweet little girl ...

Pictures of Bridget at 30 Months

Late afternoon sunshine and a sweet little girl ...

Bridget at 30 Months

Bridget is two and a half. She is 32 inches tall and weighs 23 pounds (which puts her at about the 25% mark for both height and weight on the adjusted scale). Her small size shouldn't fool anyone...this child can put away the food, and she's as strong as an ox (well, maybe not quite, but anyone who has tried to wrangle her in for a diaper change knows exactly what I'm talking about).

She's also making steady--though not always speedy--progress. She has moved out of her highchair and into a booster seat at the kitchen table for meals, and can now climb easily out of her pack-n-play (which means no "down time" for mommy during the day!). She is walking independently (when she wants to...she still prefers to crawl). She has 10-15 distinguishable words and lots of signs (50-60).

Bridget’s “total communication” has exploded recently. She has somehow figured out how to communicate most of her needs and wants with the words “mom”, “da” (daddy), “dis” (this), “dat” (that), “dere” (there), “moe” (more),“moe dis”, “moe dat”, “ouch”, “yep”, “NO”, “DO”, “hup” (cup), “eat”, and “hug” (hungry)…in combination with a handful of signs. For example, she says, “dere” (points to the basement), signs “play” and says, “DO!” She means, “I want to play in the basement”. She says “hup!”, points to the juice on the counter and says, “DO!” She wants her cup of juice. She sees me leave, points to the door and says, “Mom, dere. DO!” She means, “My mom went out that door and I want her. I do!

Also of note, she:

- takes 10-15 steps at a time without help, walks with fingertip support up to 100 steps (depending on mood)

- bounces while standing, likes to dance while holding hands with someone (especially to "Single Ladies" by Beyonce)

- new signs: eat, coffee, thirsty (she does not drink coffee!)

-makes lots of different kinds of sounds, loves to pretend to talk on the phone and carries on in-depth “conversations” (she answers, “Hehwo?”)

-likes to put on headbands, hats and sunglasses, tries to put clothes over head. Takes pants and shirts off.

- responds to the following: "Please stand up and walk”, “Can you bounce?”, “Can you kick?”, "Be a ballerina?", "Sing opera?", “Your baby is crying” (she pats the baby doll) or “Your baby is hungry” (she gets a spoon and feeds the doll), “Go get a book”.

**We are beginning the process to transition Bridget out of Early Intervention and into the local school system. I'm nervous about all the changes, and about moving out of our comfortable "therapy" routine. I know she'll be evaluated by a whole new set of people, and that I'll have to learn to navigate a whole new system. Please, if anyone has tips or thoughts about this phase, do let me know...

Bridget at 30 Months

Bridget is two and a half. She is 32 inches tall and weighs 23 pounds (which puts her at about the 25% mark for both height and weight on the adjusted scale). Her small size shouldn't fool anyone...this child can put away the food, and she's as strong as an ox (well, maybe not quite, but anyone who has tried to wrangle her in for a diaper change knows exactly what I'm talking about).

She's also making steady--though not always speedy--progress. She has moved out of her highchair and into a booster seat at the kitchen table for meals, and can now climb easily out of her pack-n-play (which means no "down time" for mommy during the day!). She is walking independently (when she wants to...she still prefers to crawl). She has 10-15 distinguishable words and lots of signs (50-60).

Bridget’s “total communication” has exploded recently. She has somehow figured out how to communicate most of her needs and wants with the words “mom”, “da” (daddy), “dis” (this), “dat” (that), “dere” (there), “moe” (more),“moe dis”, “moe dat”, “ouch”, “yep”, “NO”, “DO”, “hup” (cup), “eat”, and “hug” (hungry)…in combination with a handful of signs. For example, she says, “dere” (points to the basement), signs “play” and says, “DO!” She means, “I want to play in the basement”. She says “hup!”, points to the juice on the counter and says, “DO!” She wants her cup of juice. She sees me leave, points to the door and says, “Mom, dere. DO!” She means, “My mom went out that door and I want her. I do!

Also of note, she:

- takes 10-15 steps at a time without help, walks with fingertip support up to 100 steps (depending on mood)

- bounces while standing, likes to dance while holding hands with someone (especially to "Single Ladies" by Beyonce)

- new signs: eat, coffee, thirsty (she does not drink coffee!)

-makes lots of different kinds of sounds, loves to pretend to talk on the phone and carries on in-depth “conversations” (she answers, “Hehwo?”)

-likes to put on headbands, hats and sunglasses, tries to put clothes over head. Takes pants and shirts off.

- responds to the following: "Please stand up and walk”, “Can you bounce?”, “Can you kick?”, "Be a ballerina?", "Sing opera?", “Your baby is crying” (she pats the baby doll) or “Your baby is hungry” (she gets a spoon and feeds the doll), “Go get a book”.

**We are beginning the process to transition Bridget out of Early Intervention and into the local school system. I'm nervous about all the changes, and about moving out of our comfortable "therapy" routine. I know she'll be evaluated by a whole new set of people, and that I'll have to learn to navigate a whole new system. Please, if anyone has tips or thoughts about this phase, do let me know...

Our Beautiful Life

...is covered in snot. I can't wait for Spring.

In the past month, I've seen every episode of Hi-5 ever made, ten times each. We've gone through 5 huge boxes of Kleenex (thank God for the kind with lotion), three bottles of calming bath foam, and more Tylenol & cough drops than you'd think possible.

I've cleaned our three humidifiers six times each, washed enough sheets and pillowcases to cover our entire neighborhood, and neglected the dishes almost every night.

I've been out of the house only to go to the doctor, the grocery store and to drive Sara to dance class. A woman can only be trapped in her house for so long. Lack of light and air is a serious problem. I feel like a cat trying to find the sunny spots in the house.

I spent yesterday afternoon on the family room couch with my box of Kleenex and a bag of Spicy Sweet Chili Doritos (which are addictive, and the only thing I am interested in eating right now) watching, yep, Hi-5. Someone save me.

All this reminds me of a post I read at Unringing the Bell. I can so relate...

Our Beautiful Life

...is covered in snot. I can't wait for Spring.

In the past month, I've seen every episode of Hi-5 ever made, ten times each. We've gone through 5 huge boxes of Kleenex (thank God for the kind with lotion), three bottles of calming bath foam, and more Tylenol & cough drops than you'd think possible.

I've cleaned our three humidifiers six times each, washed enough sheets and pillowcases to cover our entire neighborhood, and neglected the dishes almost every night.

I've been out of the house only to go to the doctor, the grocery store and to drive Sara to dance class. A woman can only be trapped in her house for so long. Lack of light and air is a serious problem. I feel like a cat trying to find the sunny spots in the house.

I spent yesterday afternoon on the family room couch with my box of Kleenex and a bag of Spicy Sweet Chili Doritos (which are addictive, and the only thing I am interested in eating right now) watching, yep, Hi-5. Someone save me.

All this reminds me of a post I read at Unringing the Bell. I can so relate...

I Wish I Would Have Known

...how quickly I'd come to see Bridget as perfect, and the rest of the world as a little flawed.

Right after Bridget was born, there was a sense of concern and uncertainty about her future (see "Living in the Light" on the sidebar to the right for more on this) that seemed to hover around us even though we were trying desperately to find our way out of it. Acquaintances were sad for us. Family and friends were supportive and kind, but you could just feel the elephant in the room. I understand now that the heaviness was the unknown.

Health concerns aside, it kills me that there was any sadness surrounding Bridget. We couldn't have known anything different, but I wish we would have. I wish we would have been able to see that we would all be more than fine, and that Bridget would thrive. As time has passed, and as Bridget has grown, we have come to see that there was no reason to be sad or scared.

I write now almost with a sense of rebellion. I keep thinking, Is this what all the fuss was about?

I wish we could have known--could have seen into the future--how things would be today...that we would feel as though we could not live without this child; that she brightens our every day and brings meaning to our lives in ways we could never have imagined.

Far from the images we envisioned the day she was born, we’ve come to know Bridget as a healthy and expressive little girl who is reaching milestones on her own terms. She does not give up on anything, and we delight in her tenacity and determination.

Just look at this picture. You can't look at Bridget and be sad. She does not see herself as challenged. She is just a kid--being, and doing. Like everyone else, Bridget has her own set of skills and challenges. Like everyone else, she's also full of layers--full of dimension--and potential.

Thank you, Bridgey, for all you bring to our lives. I look forward to every day we get to spend together! Happy Valentine's Day, my beautiful little girl...

I Wish I Would Have Known

...how quickly I'd come to see Bridget as perfect, and the rest of the world as a little flawed.

Right after Bridget was born, there was a sense of concern and uncertainty about her future (see "Living in the Light" on the sidebar to the right for more on this) that seemed to hover around us even though we were trying desperately to find our way out of it. Acquaintances were sad for us. Family and friends were supportive and kind, but you could just feel the elephant in the room. I understand now that the heaviness was the unknown.

Health concerns aside, it kills me that there was any sadness surrounding Bridget. We couldn't have known anything different, but I wish we would have. I wish we would have been able to see that we would all be more than fine, and that Bridget would thrive. As time has passed, and as Bridget has grown, we have come to see that there was no reason to be sad or scared.

I write now almost with a sense of rebellion. I keep thinking, Is this what all the fuss was about?

I wish we could have known--could have seen into the future--how things would be today...that we would feel as though we could not live without this child; that she brightens our every day and brings meaning to our lives in ways we could never have imagined.

Far from the images we envisioned the day she was born, we’ve come to know Bridget as a healthy and expressive little girl who is reaching milestones on her own terms. She does not give up on anything, and we delight in her tenacity and determination.

Just look at this picture. You can't look at Bridget and be sad. She does not see herself as challenged. She is just a kid--being, and doing. Like everyone else, Bridget has her own set of skills and challenges. Like everyone else, she's also full of layers--full of dimension--and potential.

Thank you, Bridgey, for all you bring to our lives. I look forward to every day we get to spend together! Happy Valentine's Day, my beautiful little girl...

Coming to Terms, Martha Beck, & the "R" word

I read Expecting Adam when Bridget was about four months old. A friend of my mom's had read it and sent it to me, knowing that it would be of particular interest given Bridget's diagnosis and my love of literature.

You might see the book listed as a "must-read" on the sidebar of many Ds blogs, and notice the mysterious, blurred image of a woman standing alone on the front cover. It is a beautiful story with mystical and otherworldly elements, but it is not a book for the faint of heart, and may or may not be suitable for those with a brand-new diagnosis (depending on the person).

While filled with lovely imagery and deep awareness, Expecting Adam also deals with some of the more heartbreaking aspects of raising a child with Down syndrome. Beck does not mince words, which I like. While making it clear that she adores her son, Adam--she actually sees him as an angel--Beck is straightforward (blunt, really) in her use of the "R" word and unapologetic for it. She uses the term in a clinical way, not to put Adam down, and I think also to address directly the close association of the word "retarded" with the words "Down syndrome". It is a difficult topic, but one we all come across at some point. This might be tough for readers who are too early in the journey, too new to the diagnosis.

I read the whole book in a matter of hours and--though I kept feeling confronted by words and images I couldn't yet reconcile--came to appreciate Beck's honesty. I knew she was addressing issues that I, too, had either already considered or would face in the future. It was a challenging read in some ways, but the book (and Beck's perspective) helped me work through my own thoughts and feelings on parenting Bridget and on Ds, disability and developmental delays.

Today, despite still feeling slightly out of my comfort zone sometimes, I'm less caught up in semantics. (I'm not quite as sensitive, though I know well the importance of language and the words we choose to use. I still have a hard time with the "R" word because of the connotations, but developmental delays are a major part of Ds. In fact, that aspect might be the only thing all of our children have in common other than the extra chromosome itself.)

I don't let what other people say affect me as much as I used to, because I see Bridget for the person she is. I'm very much of the it-is-what-it-is mindset. Bridget is awesome and she is developmentally delayed. I'm very sure about both.

On a side note, I recently read an interesting interview with Beck. (Read the whole interview here.)

I'm curious...does anyone else have thoughts or comments on Expecting Adam, or on coming to terms with their child's Down syndrome diagnosis/developmental delays?


*Expecting Adam was written in the late '90s, before "people first" language and campaigns to end use of the "R'' word came to the forefront of the disability rights movement.

Coming to Terms, Martha Beck, & the "R" word

I read Expecting Adam when Bridget was about four months old. A friend of my mom's had read it and sent it to me, knowing that it would be of particular interest given Bridget's diagnosis and my love of literature.

You might see the book listed as a "must-read" on the sidebar of many Ds blogs, and notice the mysterious, blurred image of a woman standing alone on the front cover. It is a beautiful story with mystical and otherworldly elements, but it is not a book for the faint of heart, and may or may not be suitable for those with a brand-new diagnosis (depending on the person).

While filled with lovely imagery and deep awareness, Expecting Adam also deals with some of the more heartbreaking aspects of raising a child with Down syndrome. Beck does not mince words, which I like. While making it clear that she adores her son, Adam--she actually sees him as an angel--Beck is straightforward (blunt, really) in her use of the "R" word and unapologetic for it. She uses the term in a clinical way, not to put Adam down, and I think also to address directly the close association of the word "retarded" with the words "Down syndrome". It is a difficult topic, but one we all come across at some point. This might be tough for readers who are too early in the journey, too new to the diagnosis.

I read the whole book in a matter of hours and--though I kept feeling confronted by words and images I couldn't yet reconcile--came to appreciate Beck's honesty. I knew she was addressing issues that I, too, had either already considered or would face in the future. It was a challenging read in some ways, but the book (and Beck's perspective) helped me work through my own thoughts and feelings on parenting Bridget and on Ds, disability and developmental delays.

Today, despite still feeling slightly out of my comfort zone sometimes, I'm less caught up in semantics. (I'm not quite as sensitive, though I know well the importance of language and the words we choose to use. I still have a hard time with the "R" word because of the connotations, but developmental delays are a major part of Ds. In fact, that aspect might be the only thing all of our children have in common other than the extra chromosome itself.)

I don't let what other people say affect me as much as I used to, because I see Bridget for the person she is. I'm very much of the it-is-what-it-is mindset. Bridget is awesome and she is developmentally delayed. I'm very sure about both.

On a side note, I recently read an interesting interview with Beck. (Read the whole interview here.)

I'm curious...does anyone else have thoughts or comments on Expecting Adam, or on coming to terms with their child's Down syndrome diagnosis/developmental delays?


*Expecting Adam was written in the late '90s, before "people first" language and campaigns to end use of the "R'' word came to the forefront of the disability rights movement.

Take Your Coat Off & Stay Awhile...

If you visit our house, you are welcome to kick your shoes off by the front door, or leave them on--whichever is most comfortable for you. The same applies when you visit here.

You should feel free to stop by often or sporadically. Leave comments whenever you'd like, but don't feel obligated (I'll always answer questions or entertain topics for new posts. Just email me or leave a comment if there's something you'd like me to address or know. And I'll keep writing even if everyone out there is silent...but if everyone out there leaves feedback, I'll have much more to write about!)

If you knock on my door and I'm in my pj's, I may or may not answer (I always assume it's the Fed Ex guy, anyway). But that is part of the beauty of blogland...you can pop in here, without warning, at any time day or night. You can slip quietly away, or take up residence. Since there's no chance of waking a sleeping baby--or encountering unflushed toilets--you can also go anywhere you please on this blog at your leisure.

This is all to say that however you got here, and whatever shape you came in, I'm glad you stopped by. Feel free to stay awhile and look around...

Take Your Coat Off & Stay Awhile...

If you visit our house, you are welcome to kick your shoes off by the front door, or leave them on--whichever is most comfortable for you. The same applies when you visit here.

You should feel free to stop by often or sporadically. Leave comments whenever you'd like, but don't feel obligated (I'll always answer questions or entertain topics for new posts. Just email me or leave a comment if there's something you'd like me to address or know. And I'll keep writing even if everyone out there is silent...but if everyone out there leaves feedback, I'll have much more to write about!)

If you knock on my door and I'm in my pj's, I may or may not answer (I always assume it's the Fed Ex guy, anyway). But that is part of the beauty of blogland...you can pop in here, without warning, at any time day or night. You can slip quietly away, or take up residence. Since there's no chance of waking a sleeping baby--or encountering unflushed toilets--you can also go anywhere you please on this blog at your leisure.

This is all to say that however you got here, and whatever shape you came in, I'm glad you stopped by. Feel free to stay awhile and look around...

Beauty Isn't the Only Thing in the Eye of the Beholder

Concepts like
PERFECTION,
LUCK,
BURDEN,
WORTH and
POTENTIAL
are just as subjective--
their definition
depends on the viewer
as well as the view....

Beauty Isn't the Only Thing in the Eye of the Beholder

Concepts like
PERFECTION,
LUCK,
BURDEN,
WORTH and
POTENTIAL
are just as subjective--
their definition
depends on the viewer
as well as the view....

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...