From Fear to Awe

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

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

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

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

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

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

And you stand in awe...

From Fear to Awe

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

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

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

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

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

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

And you stand in awe...

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....