From her blog today:

The Incredible, Edible Nella

From Babycenter.com:

At about three months, when she's placed on her stomach, your baby will lift her head and shoulders high...at this point she may amaze you by flipping from her back to her front, or vice versa.

From Downsyn.com

Your baby will learn to do all the things that other children learn to do but it will take her a little longer and it will take a little more patience on your part.

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At six weeks, check it:

Nella Rolls Over

...and she did it three times today! ...and then slept for five hours.

More at Enjoying the Small Things.

HT: Margaret

Simon Barnes: life with a son with Down's syndrome

My son's function is to be loved, and to love in return. Perhaps that is everyone's real function

Simon Barnes at home in Suffolk with his son Eddie, 5

For some years I shared my house with a tiger. Well, he was only intermittently a tiger, but the times when he was a tiger were profoundly significant for us both. I remember the first time: he was at his grandmother's house and came across a tiger mask. . . . Eddie roared. He made his fingers into claws and roared again. After that, for once Eddie has taken a fancy to a notion that he is reluctant to let go, he spent a great deal of the evening roaring and it seemed likely that we would need to get the tiger mask surgically removed before he went to bed.

Eddie is my second son, and he has Down's syndrome. Animals have been as important in his growing up as they have been for Joe, my first, as they are for every developing human. The signing system of Makaton has been of immense importance to Eddie, and among the first signs that he was able to do (after biscuit) were cat and dog. To sign cat, you draw whiskers on your face with your fingertips; to sign dog, you stab downwards, paw-like, with two fingers on each hand.

Our dog Gabriel, a black labrador bitch, helped to shape Eddie's universe. A deep joy in his life was to curl up alongside Gabriel in her basket. If ever Gabriel causes me passing irritation, I remind myself that she is not so much an angel as a saint, whose generosity to Eddie is worth commemorating on a stained-glass window. She has scarcely uttered a cross word in Eddie's direction, never once snapped: only occasionally, when the ear-pulling and tailtugging became too oppressive, she would sigh and walk into another room. Because of Gabe, Eddie knew that he was living in a world full of kind and generous creatures.

I was rung up the other day by someone I had never met. His wife had just given birth to a girl with Down's, and he was struggling. So I was happy to talk about my own experience: to tell him that, really, it's not something to get too desperate about. It seldom occurs to me that Eddie's life could have been something else: I have never for an instant thought that our family is blighted or even compromised by his existence. The exact opposite is true. Nor am I an angel or a saint: I am just another dad, getting on with things as best he can, trying to emphasise love above exasperation.

We had been told after the scans that there was a 50 per cent chance that Eddie would have Down's. We didn't go for an amniocentesis because that might have killed him, and, in any case, my wife Cind was not considering a termination: not her way, to evade responsibility for anyone or anything put in her charge. Long before he was born, or before Cind knew of his nature or his condition, Eddie was the beneficiary of the most ferocious love: of a loyalty without question or constraint. That's Cind's way. Me, I followed, a poor but enthusiastic second. So Eddie was born and had two holes in his heart, and our immediate concern was not the nature or the fact of his Down's syndrome but whether or not he would live. He had open-heart surgery at four months, and now, aged 8, he is built like a little bull. . . 

. . . .What is Eddie for? A question worth asking, I think. The Nazis sent people with Down's to the ovens, because they polluted the purity of the race. And before we shudder at such barbarity, we should remember that most women pregnant with a baby with Down's syndrome choose to abort. It's clear that many people believe that a child with Down's has no point: that such a being is extraneous to human needs, a mere burden on society and, in particular, on the parents. Best get rid of them.

The reality of Eddie's life contradicts all that. At school, he is held very dear. The headmistress has said that her school is a better place for his presence: because Eddie is there, the school's small society has become more caring, more gentle, more at ease with itself. At the end of the last school year, Eddie won the Peace Prize, voted for annually by the entire class. The prize is given to the kindest, most generous and most helpful child.

Eddie comes with us to shops and restaurants and pubs and cafés, and I have never heard a whisper of distaste. Au contraire: Eddie, when in a sunny mood, becomes an instant favourite, the people he encounters relishing the chance to do small things to make him happy.

Is that enough, though? Shouldn't an individual contribute something to society? Eddie's function is to be loved, and to love in return. Perhaps that is everybody's ultimate function. Eddie enriches the lives of his family and enriches the lives of those he comes into contact with outside. That seems to me to be a life right on the cutting edge of usefulness.

It's some time now since Eddie was last a tiger. He is often a dog, and will fetch sticks and bark; and he is sometimes a cat. His current favourite book is about a dog called Floppy who rescues a litter of puppies from a fire, part of an inspiring series with which he is learning to read. He does, however, still sometimes give a jocular roar when it seems appropriate. Once a tiger, always a tiger.

They say every picture tells a story, and I figured these pictures would tell the story better than the thousands of words I've written in an effort to eliminate the fear of Down syndrome and to share the joy and love these special individuals bring to the lives of their families and their communities.

One of the sweetest things I've heard as a blogger - and I've heard it from several moms - is that through reading MommyLife, they've lost their fear of having a baby with Down syndrome. Because our society does so much to build that fear - promoting abortion rather than acceptance - this means so much to me.

Here is the current slideshow:

Or you can access the photo album with captions written by the moms:

Our Little Extras: Moms Celebrate Down syndrome!

This has always been an open album - that is, moms have continued to send me pictures to add. As of today there are 110. When I receive a new photo I put it on the cover until the next one comes in.

Please send me yours - and if you know a mom who should be included, pass it on!

Check out my Down syndrome category for more articles - or subscribe to my Down syndrome feed.

Hi Barbara,

Below is small glimpse of our story...

On December 16th 2008, I gave birth to my second son, Nicholas Asher (his name was chosen before birth) at Christiana Hospital in Newark, DE. We were surprised to learn he was diagnosed with Trisomy 21, Down syndrome. We had entered a whole new world of medical terminology, additional doctor visits, interviewing hospitals and surgeons for his upcoming open-heart surgery and yet through it all...we also learned a new capacity of love. My husband, Steve, myself and our 4-year old son, Jacob, had our own hearts captivated by this precious angel that, now, completed our family. He is also living proof of his chosen name, Asher. According to Genesis 30:13; Joshua 7:17; Judges 1:31,32; and Luke 2:36 his name means, "happy, blessed."

On Nicholas' two-month birthday we drove to Children's Hospital in Philadelphia and handed him over to the very skilled hands of a leading anesthesiologist who would then lay him on a table for Dr. Tom Spray (top heart surgeon in the country) to repair an AV Canal defect. (Atrioventricular (AV) canal defect is a large hole in the center of the heart. It's located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles)). After a little more than a week in the hospital we were able to bring Nicholas home...what a great and joyous day!

After spending that time in the hospital and meeting so many parents of children who were awaiting a heart and realizing our situation was rather simple...fix the heart and go home...simple! I cannot imagine spending months in the hospital environment knowing that one child must die so that mine may receive the heart needed to live. Hospitals are filled with stories far greater than one can imagine, yet through it all, it is a place full of love, a place of joy and a place of hope.

In December 2009, Nicholas was again driven to CHOP for an additional surgery. Although this time it was not on his heart, it was surgery nonetheless. He was "worked on" by multiple surgeons to remove the tonsils and adenoids, place tubes in his ears, an orchiopexy (surgery to bring down an undescended testicle) was performed, a hernia repair and a circumcision repair was done. Again, through this process we were humbly reminded that we were so lucky...so many stories, so many children.

Nicholas is now one year old and has already changed the lives a hundreds of people and continues to do so today. His heart is working great, thanks to Dr. Tom Spray and his staff at Children's Hospital of Philadelphia. We are a very blessed and very loved family by all. We are the new definition of a "special family."

My prayer is that all mothers find this happiness within each of their children, no matter the diagnosis.

blessings,
Traci LaGanke

Y'all are welcome to send me your own stories for publication. And please check out my 2008 Mother's Day album for 110 pictures of moms with their Little Extras!

As I write this, 71, 627 have signed the pledge to stop using this word. If you do seize this teachable moment with your family, this is a great follow-up.

With all due respect, Barbara, don't forget that Rush Limbaugh is also guilty of using the R word. I don't expect you to post this as a comment. :)

Sara,

I don't know exactly what you mean about not expecting me to "post this as a comment" - but you are right, I am posting this as an entry.

I can't tell you how glad I am that you have given me an opportunity to address this issue, which the media have distorted, leading gullible people to jump on a bogus bandwagon.

I heard the broadcast in which Rush used the "r" word repeatedly and I was jumping up in excitement akin to Henry V's men when they heard his St. Crispin's Day speech.

What Rush did that day was a brilliant piece of Alinsky-style politics - rubbing the face of Rahm Emanuel in his own disgusting character - as revealed in his words. As Rush often says, "Words mean things."

Rahm E's use of the "r" word as an epithet cut through he phony image of liberals as champions of the underdog and to the heart of their elitism, arrogance, and contempt for others. Just like Obama, when he let slip on Letterman the sneer at Special Olympics. Or Al Gore when he referred to Republicans as "that extra-chromosome crowd."

Funny how liberals get a pass on stuff like this.

So Sara, since you obviously didn't hear Rush that day, let me set the record clear.

What Rush was doing was refusing to give Rahm a pass, saying the word over and over to drive the ugliness home to his audience. He was being an advocate for our children. I loved him for that. This was not humor or satire, but holding a mirror up to the source.

Believe me, Sara, as someone who has been listening to Rush daily since 1990 - when the Democrats were trying to destroy Clarence Thomas - I feel like i can vouch for Rush as a respecter of individuals. He would never use the "r' word in the way Rahm Emanuel used it. Rush has great respect for individuals and for life.

But the media - who have a consistent record of taking Rush out of context to vilify him the next day - jumped on his using the word to take the focus off their liberal guy. And a lot of people fell for it.

Sara - and others caught in this misunderstanding - I hope you will listen to the entire broadcast rather than second-hand reports or out-of-context clips.

And thanks again for the opportunity to set the record straight!

Suggested read: What About the "R" Word - Does It Matter?

See also
Children's books on disabilities
Down syndrome - books for parents

It's so ironic that our culture has evolved in compassion and caring towards individuals with Down syndrome even as 90% of babies diagnose prenatally are aborted. In actuality, it couldn't be a better time to have a child with Down syndrome. And believe me, as a mother I will tell you that having one isn't about us helping them reach their potential as much as it's about them helping us reach ours.

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See also
Children's books on Down syndrome
Children's books on disabilities

One thing I've learned since my son Jonny was born 16 years ago is that we all have disabilities. Those whose view is too narrow to see the gifts in every human being have the greatest disability of all - and they are deserving of compassion and prayer too.

Susan M. left this comment on my search for no-tie laces for my sons with Down syndrome whose shoe-tying skills are not keeping pace with their feet which have outgrown most velcro-closure shoes:

I just got an e-mail this morning from Lock Laces. You can use the code "repeat" to get $1 off each pair. That makes them $3.99/pair at www.locklaces.com The e-mail said "Feel free to give this code to your family and friends as well so that they may receive the discount too for knowing such a cool person like you!" lol

I just ordered some for Jesse, Daniel and Justin. Jonny does know how to tie his shoes - he learned when he was about 15, as I recall. What a triumphant moment that was!

She shares her feelings nakedly, but the conclusion is fierce, emphatic love:

I cannot begin to tell you how much I love her. I wouldn't trade her for the world, and y'all can have that heart you let me borrow back. My broken heart has been healed...and if you held her, you'd know what I mean.

God has certainly been providing many windows for people to peek inside the lives we share with loved ones with Down syndrome. The more people understand this is not a tragedy but an amazing challenge with transformative power within your family and community, the more lives will be spared.

Thank you so much to Kelle for this beautiful piece of her heart:

Nella Cordelia: A Birth Story

What About the R-Word? Does It Matter?
Barbara Curtis
Crosswalk.com Contributor

Talk about teachable moments. No matter what our political persuasion, to think of a grown-up White House staffer referring to his fellow travelers as "F***ing retarded" should hit a nerve.

And if it doesn't, or if it's only the F-word and not the R-word that gives you the heebie-jeebies, we need to have a serious talk.

If you haven't realized that the R-word ranks right up there with the N-word in the no-no-not-evers for your children, then let me bring you up-to-speed.

Retard -- and the epithet retarded -- are destructive, hurtful, and damaging words. But unlike other such words, each time they are used - even playfully, they hurt hundreds of thousands of innocent people.

Take Jonny, for instance -- my 17-year-old son with Down syndrome. All his life, Jonny has had to work extra hard to learn the things that come easily to others. With a sister just a year younger, he was blessed to spend his early years with someone like a twin, learning to walk and run and swim at the same time. But this year Maddy will earn her driver's license and while Jonny will be thrilled to ride shotgun, he will probably never be able to take the wheel.

Does that make Jonny less of a person than Maddy?

I guess it all depends on your point of view.

Read the rest at Crosswalk.

hi

i would just like to say that what you have written is so comforting and has made my day feel so much better, im 22 years old and yesterday i was told that my baby growing inside of me is very high chance of having down syndrome- since then every person i have confided in has replied with "how sorry" they are for me, to read what you have written has made me feel so much better that when my baby is born and if it has down syndrome its not a tragedy but a celebration of life just like with any other baby!

meg

I wrote Meg to tell her I was moving this to an entry so other moms could comment and share the other side of the story - the part her friends are missing. Will you leave a comment, please?

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Picture of Angie and Dominic from this photo album:

Our Little Extras: A Mother's Day Down syndrome celebration