Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:

Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.

And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night
Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...

Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:

Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.

And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night
Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

A Note About Glee

I watch it. I watched it this week with Sara, who asked, Mom, are you going to blog about this? (as I had my face buried in a pillow, sobbing, when Sue went to visit her sister).

I love Sue Sylvester. She is the best character on television. Maybe ever.

I love Mr. Schuester and his mash-ups, Kurt and his dad, sweet Finn, the Cheerios, the hot guy with the mohawk :)...all of it. With the exception of the pregnancy story lines, and the show not being appropriate for young teens--who are watching in large numbers (I have to censor quite a bit with Sara)--there isn't much I don't like.

People have been talking about Glee all fall, and while some people can't get enough of it, others are critical. The show is meant to get people talking...and thinking. The people behind the show know just what they're doing. That became clear in this week's episode. (Click here for a review of the show.)

Regardless of gender, level of ability, social strata, sexual preference, diagnosis, age (and so on), all people are people first, and want to be treated like everyone else.

In life, just as in high school, people form opinions about others without all the information, without truly understanding all the facts. All people want--and deserve--to be seen, and to be treated with compassion.

*This week's show featured two actresses with Down syndrome. I know many people in the Ds community were aware of this prior to the show and watched because of that. Like most everyone else, I was curious how Ds would be portrayed, and how it fit into the story. It was hard for me to see that Sue's sister was in a nursing home, and I didn't love that others (without personal experience with Down syndrome) might assume that all people with Ds end up in nursing homes, or remain child-like and dependent. (The relationship between the sisters was genuine and touching, though, so my emotions were all over the place...hence, the sobbing...hard to process.) The younger character with Ds was a vibrant teenager, perhaps to show another aspect of life with Down syndrome today (I do wish she would have had her own money to buy the darned cupcake). As with everyone else, there is enormous diversity within the Ds population. Both characters are realistic and representative of individuals with Down syndrome. It will be interesting to see where they go with this.

A Note About Glee

I watch it. I watched it this week with Sara, who asked, Mom, are you going to blog about this? (as I had my face buried in a pillow, sobbing, when Sue went to visit her sister).

I love Sue Sylvester. She is the best character on television. Maybe ever.

I love Mr. Schuester and his mash-ups, Kurt and his dad, sweet Finn, the Cheerios, the hot guy with the mohawk :)...all of it. With the exception of the pregnancy story lines, and the show not being appropriate for young teens--who are watching in large numbers (I have to censor quite a bit with Sara)--there isn't much I don't like.

People have been talking about Glee all fall, and while some people can't get enough of it, others are critical. The show is meant to get people talking...and thinking. The people behind the show know just what they're doing. That became clear in this week's episode. (Click here for a review of the show.)

Regardless of gender, level of ability, social strata, sexual preference, diagnosis, age (and so on), all people are people first, and want to be treated like everyone else.

In life, just as in high school, people form opinions about others without all the information, without truly understanding all the facts. All people want--and deserve--to be seen, and to be treated with compassion.

*This week's show featured two actresses with Down syndrome. I know many people in the Ds community were aware of this prior to the show and watched because of that. Like most everyone else, I was curious how Ds would be portrayed, and how it fit into the story. It was hard for me to see that Sue's sister was in a nursing home, and I didn't love that others (without personal experience with Down syndrome) might assume that all people with Ds end up in nursing homes, or remain child-like and dependent. (The relationship between the sisters was genuine and touching, though, so my emotions were all over the place...hence, the sobbing...hard to process.) The younger character with Ds was a vibrant teenager, perhaps to show another aspect of life with Down syndrome today (I do wish she would have had her own money to buy the darned cupcake). As with everyone else, there is enormous diversity within the Ds population. Both characters are realistic and representative of individuals with Down syndrome. It will be interesting to see where they go with this.

Friends & Fun

Look who was here last weekend (it's Leah from Everyday Elliott!):





We had a lovely visit with the Elliott family (Mary, Eric, Greg & Leah) last Sunday night. Bridget and Leah are close in age (Bridget is about 6 months older than Leah), and are close in size. Leah is almost as tall, but much lighter than Bridget. And, for such a tiny thing, she puts away the food :).

The girls were sweet together. They both like baby dolls, phones, music and coloring. All of the other kids enjoyed one another, too!

A sweet and funny moment of the night: Leah's big brother, Greg, was delighted to find that we have a Captain America costume (and coloring book). He also discovered the big t.v. in our theater room and wanted to stay and watch a movie (of course, just as it was time for them to leave)...which brought about some tears...from Greg (genuine) and then from Leah (sympathetic) and then from Bridget (sympathetic). Greg was sprawled out in a bean bag, in the Captain America costume, in tears, with Bridget and Leah both fake-crying and also trying to console Greg and each other. Aside from Greg's tears, it was h-i-l-a-r-i-o-u-s.

We had a great time. Please come back soon, friends.


*Excuse the quality of the photos...my big camera is out for repair :(. We'll get more shots of the girls together next time!

Attention: Parents of Children with Ds

Are you interested in making a difference? Here's a terrific chance to do just that.

Lisa at Genetically Enhanced is working with the Centers for Disease Control (CDC) to re-create their web page on Down syndrome, and she's asking for detailed feedback from families of children with Ds. There's much work for her to do in a short period of time, so head on over and give some input....

Attention: Parents of Children with Ds

Are you interested in making a difference? Here's a terrific chance to do just that.

Lisa at Genetically Enhanced is working with the Centers for Disease Control (CDC) to re-create their web page on Down syndrome, and she's asking for detailed feedback from families of children with Ds. There's much work for her to do in a short period of time, so head on over and give some input....

"Germ Warfare"

So all this week, Chris kept asking, Is Bridget coming down with something?

No, I explained, her preschool class is learning about germs...what they are, how they spread, and how to practice healthy habits.

It must have made a big impact on her, because she was sneezing and coughing (in a very contrived, exaggerated way) every other minute this past week. (With all the crud going around, we are all a little bit on edge when we hear coughing!).

Bridget has known how to cough into her elbow for about a year now. She loves to practice covering her sneezes and coughs.

She's such a little actress. And her big break came this week, when she was asked by her teacher to demonstrate the "covering your cough" technique to the class during circle time.

Yea, Bridget. You go girl.

I wish I had pictures of that!