Indians Are People Too

Our oldest son, Randall, had a story in his reading book today that spotlighted a part of our nation's history which no one is proud to remember.

It reveals a sordid truth about us, however, that must be remembered, painful though it may be.

At the time of the story, in 1879, an Indian was not considered to be a person.

Driven away from their homes in Nebraska, the Ponca Indians fared poorly in the harsh wilderness of Oklahoma with scant provisions for settlement.  Many of them died, including a child of Standing Bear, a Ponca chief.

Wishing to bury his son on ancient burial grounds, Standing Bear made the long trek back to Nebraska only to be arrested upon his arrival.

In the trial that ensued, Standing Bear made an eloquent plea for the recognition of his people:

[My] hand is not the same color as yours, but if I prick it, the blood will flow, and I shall feel pain.  The blood is of the same color as yours.  God made me and I am a man.

Today, it is hard to imagine basing the definition of humanity solely on the color of someone's skin.  "How dreadful!" we say.  "How monstrous! How uncivilized!"

And yet today.....

....it is deemed to be the right of the parent to decide that a baby is not a person because he has an extra chromosome.

I seem to be hearing echoes of the power-hungry pigs in George Orwell's Animal Farm:  "We are all created equal, but some of us are more equal than others."

Or maybe I'm hearing the diatribe of the book-burning Fire Chief in Ray Bradbury's Fahrenheit 451:  "We must all be alike.  Not everyone born free and equal, as the Constitution says, but everyone made equal.  Each man the image of every other; then all are happy, for there are no mountains to make them cower, to judge themselves against."

You may dismiss those as mere stories or as wildly improbable tales of science fiction.  But we cannot dismiss the truth of our past:  at one time we destroyed other human beings simply because they were brown.

Are we regressing into the self-justification that allowed such atrocities?  Will we soon want to seek and destroy those who are autistic, deaf, dyslexic, elderly, red-headed, or sports-impaired?

Have we come so far in 130 years only to be doomed to repeat our mistakes?

Think about it.

Perfect Love

He was a brilliant scholar, an Air Force pilot, an FBI agent.  He accepted nothing less than perfection.  In his eyes, Trisomy 21 was not the picture of perfection.  It was not part of his plan for a perfect life.

Never underestimate the power of love to change lives.

This clip is 14 minutes long, but please take the time to watch it.  I think you'll be glad you did.

It is a story that rings true because I've been there.  I know both the grief and the healing. I've lived the metamorphosis from denial to epiphany, and have been likewise overtaken by the compelling urge to share the journey.

It is a gentle transformation of dynamic proportions in which perfect love arises out of imperfection.

And when I see the tremendous power of feeble human love, I am able to visualize for the first time how very much greater is the power of God the Father's redeeming love for us, His imperfect children.

For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.  For God did not send His Son into the world to condemn the world, but to save the world through Him.

                                                                                                                                          John 3:16-17

I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. 

                                                                                                                                          Romans 8:38

Down Syndrome Awareness Month

It's October.

That means 31 for 21.

Thirty-one days of blogging for awareness of Trisomy 21, otherwise known as Down syndrome.

But this year I'd like to expand that concept.

How about 31 days of blogging for awareness of the Gift of Imperfection?

In a world obsessed with perfection, we struggle as never before to meet the impossible standards the media imposes on us.  How do we raise well-balanced children in a society so distorted in its perceptions of reality?   How do I stay balanced myself?

In pondering (well, ok, worrying) about these questions, I have come to realize that the greatest gift our family has received has been that extra chromosome.

A deviation from normal.

Something gone wrong.

That's what the Knowledgeable People say.

But the wisdom of this world is foolishness with God.

And somehow, I can't think of any better words to describe this concept than in those of Winnie the Pooh.

"Rabbit's clever," said Pooh thoughtfully.

"Yes," said Piglet, "Rabbit's clever."

"And he has Brain."

"Yes," said Piglet, "Rabbit has Brain."

There was a long silence.

"I suppose," said Pooh, "that that's why he never understands anything."

So in the interest of educating all Rabbits (of whom I once was), we welcome October and celebrating the Profound Simplicity of All Poohs.

"I thought she said October was Some Kind of Awareness Month," said Rabbit.

Pooh nodded thoughtfully. "It's the same thing," he said. 

Join us in this wonderful wacky world of letting go and enjoying the moments, both perfect and imperfect.

A Perfect World

I dislike intensely the politics of most groups, secular and religious alike, when it comes to issues like abortion.  Behind the name calling and finger pointing of both sides, somehow in the heat of the argument, we seem to quickly degenerate into the land of the inhumane.  And no one benefits from that.

So, most of the time, I would rather allow this blog to be simply the story of what one family is learning, existing for those who will find it when they need it the most.

But....

....there are times when I feel the urgency of a message that must be heard because it is not only the message of an extra chromosome, but is also the heartfelt cry of us all.

Please don't destroy me because I am not like you.

This week Kurt Kondrich has written a thoughtful article entitled "Eugenics as a Human Right?"  As you read it, can you help but ask yourself, "When will they come for me?"

In the meantime, while you're thinking, take a detour over here "In Honor of Carissa" and just for a moment allow yourself to imagine: What if everyone thought like Carissa?  Would the world be more, or less, perfect?

When Will They Come for Me?

Disability is the only minority that any of us can join in an instant.  And until we build a world that includes everyone, we're all going to miss out.                                                              --Lawrence Carter Long in the documentary Monica and David

This week Time magazine featured an article on Down syndrome concerning the ethical debate that is raging over advances in prenatal testing.  A new blood test from Sequenom, a biotech company based in San Diego, makes the prenatal discovery of Down syndrome a simple process which carries with it the ability to reveal the extra chromosome as early as 10 weeks gestation with nearly 100% accuracy. Similar testing will likely soon be available for other chromosomal deviations.

It is true, that prenatal testing as a means of preparing for the future can be a good thing. Never has there been a world so prepared for a child with Down syndrome.  Early intervention, trained therapists, and myriad resources in the forms of books, blogs, and support groups all are at our fingertips.  Projects like I Have a Voice, cartoons like Punky, and events like the Buddy Walk serve to remind the public that human beings are not made from cookie cutters  For each of us then as individuals, the future would seem to be a bright and exciting place.

But I fear that the main purpose of this early and efficient test is aimed not to prepare for a future of diversity, but to destroy it.

And I wish that I could reach out to everyone who receives the news of that extra chromosome and say...I know.  I know how scared you are.  I know that you wouldn't choose this now.

But I also know that 99% of families love their children with Down syndrome.

I know that 88% of siblings feel that they are better people because of having a sibling with Down syndrome.

I know that 99% of people who have Down syndrome themselves are happy with their lives.*

And I know that there are waiting lists of loving families who are hoping to be able to adopt a child with Down syndrome.

A prenatal test can't tell you that.  A textbook analysis of that extra chromosome is only a biological description.  It can't tell you the personality, the joy, and the unconditional love that seems to come as part of the package.  It also can't predict the fierce love that will overtake you, the strength that will become you, the great and wonderful family of diversity that will join you.

A prenatal diagnosis could never have revealed to me the joy with which Wade greets each day.  It couldn't have whispered the happiness of hearing the words, "Good morning, Mama, good morning!"  It could never have communicated the pure pleasure of the enthusiastic thankgivings that pour forth every day from Wade, no matter whether we have given him a cookie or a chore.  It couldn't have pictured how his eyes curve into happy half-moons when he laughs or how the warmth of his hug makes every homecoming heaven even though I've only been away for 15 minutes.  And it could never have hinted of the aching wistfulness I often feel--not for the life we lived without Down syndrome, but for the life that Wade lives with it.

It is a life lived with a generosity of spirit that I wish could become my own.  For his is a vision that includes a friend behind every door, beauty in a crumpled leaf, and gratitude for a crust of bread.

Naive, you may say.  He just doesn't know enough to know better.

Maybe so, maybe so.

But it is through his naivety that I have been shown the pure goodness of unadulterated love.  And it is because of this innocent example that I am learning what it is to be truly human, truly imperfect, and truly loved.

It is a universal message that we all yearn to hear.

And so I ask you to consider the future--the future of us all--when I say, "Please, please don't kill the messengers."

First they came for the communists,
and I didn't speak out because I was not a communist.
Then they came for the trade unionists,
and I didn't speak out because I was not a trade unionist.
Then they came for the Jews,
and I didn't speak out because I was not a Jew.
Then they came for me,
and there was no one left to speak out for me.

                                                                --Martin Niemoller

 *Statistics based on research by Dr. Brian Skotko published in the American Journal of Medical Genetics

All the Things He'll Never Do

When Wade was born with Down syndrome, we immediately thought of the limitations we imagined would be part of the script of his life.  During that first week as we waited for test results to come back, I tried not to think the long thoughts I was thinking.  And when Wade failed his first, second and third hearing tests I looked at him sleeping soundly and wondered if this was only the beginning of many failures.

But the day the definitive test came back, in the midst of my tears,  I suddenly had another thought:  Wouldn't I rather have him be like this than to be evil?

And then my thoughts took a different road.

Think of all the things he'll never do!


He'll never rob a bank.


He'll never be a threat to anyone.


He'll never hold someone hostage or commandeer a school shooting.


He'll likely never kill someone because he's driving under the influence of alcohol.


He won't embezzle millions from his employer.


He'll never abort innocent babies.


And he'll never, never fly big planes into twin towers.



Now, I humbly realize that I, like Adam and Eve, have lived my life under the delusion that a knowledge of good and evil is desirable.

And I look at Wade and realize that I, too, would really rather not know evil.  But I must, because only to him and to those like him has been given the wonderful Gift of Innocence.

And it is this beautiful Gift that connects me daily to that Better World where, someday once again, we will know only Good.

Wonderful World

The faces of Down syndrome...

*Photography by Coleen Barnhart

Hello, My Name is Wade

I just had a birthday.  I am five years old.

When I was born, my mom wondered what I would be like when I was five.

I could have told her she didn't need to worry.

Because now that I'm five I can do lots of things.

Take a look.

Ah, Mom! You don't need to worry about me!

I can even take pictures with your camera.

Oooops!

Oh well, a fella can't be good at everything.

Wade and Friends

Jesus loves the little children...

Kisses to you....

And Jesus said, " I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.  Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven.  And whoever welcomes a little child like this in my name welcomes Me."

*Photos courtesy of Coleen Barnhart

How Flexible Are You?

Wade's amazing ability to flex with ease has always astounded me.  He's just shy of being one of those people who can sit on their own heads.

And even while we know it is caused by the thing called hypotonia, we're still a little jealous because all we can sit on are other people's heads.

But even though we ordinary people may be limited in our physical range of motion, we still have the potential to learn how to flex in other areas of life.  Scientists have only scratched the surface in their understanding of  the plasticity of the brain and its potential to change and adapt to its circumstances.

Recently, I read a book entitled The Brain That Changes Itself  by Norman Droidge.  This book was fascinating in its stories of the amazing adaptability of the brain which, when injured, is able to allocate adjacent brain matter to take over for the damaged part.  Detailed in the book are the works of dedicated scientists and researchers who are developing programs which exercise the brain in specific ways to enhance performance in damaged areas.

Especially interesting was the story of the first doctor to perform the amputation of a phantom limb, which he did by the use of illusion!  Simply by employing a trick of the mind, the phantom limb no longer itched where it couldn't be scratched.  No drugs involved; no side effects.

The exciting thing about some of these new possibilities is the hope that exists for the restoration and maintenance of brain function not only for those with brain injuries, but also for those of us (everyone) who will lose valuable brain reflex and capacity as we age.

As we learn to flex our brains when we are young, we provide better pathways for adaptability when we are old.  

So don't fight against having to learn new things, walk new roads, and map unfamiliar territory.  It's all part of developing those brainy washboard abs.

Another item of interest involved the rehabilitation of stroke victims.  Insurance companies usually only provide rehab for a certain number of weeks because after that point, the patients seem to plateau and fail to make any more progress.  But current research shows that during the weeks when the patients' achievements appear to have leveled off, the brain is, indeed, still busy working behind the scenes sorting everything out and making the new connections that are needed to support the further transformations that will take place.

It is in the pausing, that the long-term learning takes place.

I like that thought.  Wade has provided me with many opportunities the past four years to pause and think---thoughts about learning and love, about beauty and simplicity, about embracing change and welcoming flexibility.  And there is really no rocket science involved.

But now I know that simple steps can be made simpler.

And I must be more patient to teach than eager to test.

And different is interesting, not frightening.

And the world is friendlier than I thought.

And loving someone unconditionally doesn't eliminate the need to train and to guide.

And there is a network of intertwining lives, past and present, that have provided a rich world for Wade to live in with possibilities that have never been better.

And I realize that the least of these really aren't least at all.

And I know that trying to explain all this is like picking apart the wings of a butterfly--the loveliness I see in my mind only looks awkward and tattered when I try to dissect it.

Because love still can't be explained.  Not at all, not by the most brilliant brain imaging.

And God can't be explained either, but He is closer and I thank Him daily for giving me the opportunity to flex where it matters.

Because in turning my world upside down, He helped me know which way is up.

Come to think of it,  when it comes to mental gymnastics, I might actually be sitting on my own head.

It's Valentine's Day.......Every Day

I love him best when he is asleep......

.....and better still when he is awake.