Although this was my gift for Mothers Day 2007, the album became an ongoing project, so it's never too late to send me pictures to include. The latest picture is always on the cover until I receive another.

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

Though I started working on the album five years ago, it remains timely considering the unchanged statistics that 90% of mothers receiving a prenatal diagnosis of Down syndrome are aborting their babies.

The following article - Prenatal Test Puts Down Syndrome in Hard Focus - which appeared in the New York Times the same day I published my album, should give us all pause:

What makes a person disposable? Those of us who've had children with Down syndrome - and survived to tell the tale :) - would tell any parent that no matter the grieving process they go through at the loss of their dream of a "perfect" child, it doesn't take long to learn that the child we received was actually a gift in a different-looking package.

Here is what I wrote as a brief introduction to the album:

Our kids have a little extra. A little extra enthusiasm, a little extra innocence, a little extra charm. Oh, and did I mention an extra chromosome? The one on the 21st pair that inspires so much fear in parents-to-be.

I suppose at one time all of us were fearful about Down syndrome. But take a look at our faces. Who knew how much joy lay ahead?

Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." Each of us moms has received a gift we never would have thought to ask for, bringing lessons we never knew we needed to learn. The greatest surprise is this:

Our lives with our children have been less about us helping them reach their potential than about them helping us reach ours. This album was created by Barbara Curtis - mother of four sons with Down syndrome - one by birth, three by adoption. Visit me at www.MommyLife.net. And send a picture of you and your little extra to megamommy12(at)aol(dot)com.

Please visit the album and bookmark it. Share it with your mothers' groups and OB-GYNs. Most importantly, share with anyone receiving the news that her baby has Down syndrome and wondering what lies ahead.

When Jonny was born 20 years ago, there were only a couple books available on Down syndrome. Now look at what's available - the last four all released within the last year:

This has been a great year with many high profile parents of children with Down syndrome making an impact. The abortion rate - once estimated at 90% for prenatally-diagnosed babies - is falling into the 80s. 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.

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

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

To dissociate the child from love is, for our species, a methodological error: contraception, which is to make love without making a child; artificial (in vitro) fertilization, which is to make a child without making love; abortion, which is to unmake the child; and pornography, which is to unmake love: all these, to varying degrees, are incompatible with natural law. ~Dr. Lejeune

This was in 1992, before the Internet had become the blessing it has to parents of children with Down syndrome - helping us network and find information quickly and easily - so the article meant a lot to me. I tore it out and have kept it ever since. Also, probably like many others, I also wrote to George Wills and Jonathan - kind of like leaving a comment today.

Here is the article, now at Daily Beast, part of Newsweek:

Jon Will's Aptitudes May 2, 1993 8:00 PM EDT

Jon Will, the oldest of my four children, turns 21 this week and on this birthday, as on every other workday, he will commute by subway to his job delivering mail and being useful in other ways at the National Institutes of Health. Jon is a taxpayer, which serves him right: he voted for Bill Clinton (although he was partial to Pat Buchanan in the primaries).

The fact that Jon is striding into a productive adulthood with a spring in his step and Baltimore's Orioles on his mind is a consummation that could not have been confidently predicted when he was born. Then a doctor told his parents that their first decision must be whether or not to take Jon home. Surely 21 years later fewer doctors suggest to parents of handicapped newborns that the parental instinct of instant love should be tentative or attenuated, or that their commitment to nurturing is merely a matter of choice, even a question of convenience.

Jon has Down syndrome, a chromosomal defect involving varying degrees of mental retardation and physical abnormalities. Jon lost, at the instant he was conceived, one of life's lotteries, but he also was lucky: his physical abnormalities do not impede his vitality and his retardation is not so severe that it interferes with life's essential joys-- receiving love, returning it, and reading baseball box scores.

One must mind one's language when speaking of people like Jon. He does not "suffer from" Down syndrome. It is an affliction, but he is happy-as happy as the Orioles' stumbling start this season will permit. You may well say that being happy is easy now that ESPN exists. Jon would agree. But happiness is a species of talent, for which some people have superior aptitudes.

Read more at the Daily Beast.

It's May 2 again and today George Will's column honors Jonathan's 40th birthday, just as our family honored our Jonathan's a few weeks ago:

Jon Will's gift By George F. Will, Published: May 2

When Jonathan Frederick Will was born 40 years ago -- on May 4, 1972, his father's 31st birthday -- the life expectancy for people with Down syndrome was about 20 years. That is understandable.

The day after Jon was born, a doctor told Jon's parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect -- an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers' vast sense of entitlement, which encompasses an entitlement to exemption from nature's mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society's complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in "A Streetcar Named Desire," always depend on the kindness of strangers. Judging by Jon's experience, they almost always receive it.

Read more at the Washington Post

A Leap of Love

Barbara Curtis, left, leads a prayer before dinner. To the right

Barbara Curtis, left, leads a prayer before dinner. To the right of her are Jesse, Maddy and Justin, Claire Li, Mark Li, Daniel, Carol Lai and Chloe Li, obscured by her mother. The Curtis family is raising four children, three of them adopted, who have Down syndrome. (Photos By Katherine Frey -- The Washington Post)

By Michael Alison Chandler

Washington Post Staff Writer
Sunday, November 9, 2008

Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.

Looking ahead, Barbara and Tripp Curtis worried that Jonny, who has Down syndrome, would be alone as his siblings grew up and left home. And so they adopted Jesse, Daniel and, finally, Justin. All three have Down syndrome.

Now the four brothers, ages 8 to 16, share a bedroom decorated with posters of SpongeBob SquarePants and a framed picture of Jesus in their sprawling Loudoun County house. They also share a love of the Beatles, the Everly Brothers and Special Olympics basketball.

For many parents, a diagnosis of Down syndrome can be overwhelming as they face the likelihood that the child will struggle to live independently and require intensive medical, financial and social support. Most prenatal diagnoses of Down syndrome lead to abortion.

Read more at The Washington Post

"Prospects for Improving Cognition in People with Down Syndrome." 

Thursday, April 19 at 12:00 PM ET

 Hosted by NDSS. The presentation will be led by Dr. Omar Khwaja, of Roche, a research-focused healthcare company.  The webinar will focus on the neurobiology of cognition in Down syndrome and how pharmaceutical treatments to potentially improve cognition for individuals with Down syndrome are discovered and developed. 

 
There will be time to ask questions of the speaker during the webinar and slides from the presentation will be posted the NDSS website.
 
Feel free to share this email with anyone you feel may be interested in the presentation. Contact Vanessa Quick, Manager of Education and Programs, at vquick@ndss.org or 212-763-4364 with any questions about the webinar
  
To register for the webinar go to this link:  https://www2.gotomeeting.com/register/285569546

HT/Jawan by way of The Works of God

Visit msnbc.com for breaking news, world news, and news about the economy

Did we need another book about Down syndrome?  Compared to 1993, when Jonny was born, there was one book around for parents.  Now there are countless books - including books by parents about their own experience being surprised by a baby with Down syndrome.

So did we need another book?  After reading Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny, I would have to say Yes! Yes! A thousand times Yes!

Beautifully written by a woman whose special daughter has opened her eyes to the world in a new and wonderful way, this book will open yours too.

I'm reminded that when Jonny was a toddler and our family realized how different we were because he was in our lives, my son Matt, then 9 years old, said, "Wouldn't the world be a better place if every family had someone with Down syndrome?

Wouldn't it indeed?

This is a beautiful read because it's by a mother of a child with Down syndrome who also is a professional writer. And finally, what sets this book apart is that Amy Julia Becker is a Christian whose scriptural insights illuminate her experience of mothering Penny.

The title is from James 1:7:  Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

So true.

Masterpiece Quilts

A story of love... A God-given love between a mother and her daughter with Down Syndrome

Knowing Emily is a gift from the Lord, distinctively designed by Him for His glory, Brenda stumbled upon a way to help Emily illuminate her uniqueness.  Thus Masterpiece Quilts was born.

Carefully designed by Emily and sewn together with her mother, each artistically symmetrical baby quilt is a one-of-a-kind keepsake. Together with a commemorative tag, each quilt sports one square that is intentionally aberrant from the rest... will you be able to find it?

Celebrate that special baby in your life with a Masterpiece Quilt!

Every Quilt Has A Story...

Psalm 139:16  tells us that "all the days ordained for me were written in Your book before one of them came to be."  God knows when, where, and how we will be born.  Not only that, but He forms each of us "fearfully and wonderfully."   We are each uniquely created.

Emily designs each quilt to be a one-of-a-kind keepsake to reflect God's creation of His "masterpieces"... who are made in His image.

See the pictures and read the stories of all the quilts created by Emily and sewn by her mom at Masterpiece Quilts (check out the one they created for George W. Bush)

And it has been!

Tripp sent this to everyone in our family on Jonny's 16th birthday:

Dear Family,

Today is a "day of days" in our family...Every one of you is special in God's Eyes and in my heart, but I believe we were all transformed in one way or another by Our God when he sent us Jonathan. I praise Our Heavenly Father for His goodness and thank my wife for being Jonny's Mother and Advocate.

Love to you all!
RoboPop [RoboPop because of his knee replacement :)]

Along with a bunch of pictures - which I can share with you too:

Since Jonny was a baby, this has been my song for him:

Elton John: Your Song

And you can tell everybody
This is your song
It might be quite simple
But now that it's done
I hope you don't mind
I hope you don't mind
That I put down in words
How wonderful life is while you're in the world.

~~~~~~~
See also:

A Little Extra: Lessons in Love from an Unexpected Teacher (an article I wrote that has appeared in nearly 30 publications)

Our Little Extras: Moms celebrate Down syndrome photo album

Also, please visit International Down Syndrome Coalition and appreciate the beauty that God has shared with us!