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

Love Unclenched

Now I know I've got a heart, because it's breaking.

                                                                    --The Tin Woodman in The Wizard of Oz


Last night, on the eve of the holiday dedicated to the celebration of love, I read a wrenching post entitled simply "Alone".  From the torn heart of a dad, comes the cry we hear echoed far too often by those in our local Down syndrome support group:  what do I do when my child with a disability doesn't have friends?

Many of these children are involved in classes and activities in which they have a social life of sorts.  But at 3:00 or 5:00 when the class ends, so does the interaction.

Adults who have proved to be independent enough to live on their own also grapple with this loneliness, going home after work to spend the evening hours in solitude, often sinking into depression before their families discover the cause.

And each time I hear or read of another similar account, I worry about the kind of world we inhabit where this unconcern for others happens with such regularity.  Are we really so shallow that we can only appreciate diversity under threat of the law, or through the coercion of outside forces?  (And who of us would want a friend who was forced to grudgingly spare us an hour?)

Like so many parents caught in this uncertainty, I don't have the answers, only theories.  But I'm going to venture to say that I don't believe most of humanity is that cold.  I think they are only scared.

I remember the fear I had before I became acquainted with Wade.  The fear of meeting others with disabilities, the fear of feeling uncomfortable in an unfamiliar world.  What would I say?  What would I do?  What if I couldn't understand what they were saying?  What if I said something inappropriate?

Now I realize that the sad thing about all of those "what ifs" is that they all were focused on me.  What if I reach out and something happens to me?  What if I get embarrassed/hurt/humiliated?

Perhaps I needed the shaking and cracking of my own heart to realize that real love isn't about me.

For it was then that I discovered the greatest "what if" of all.  What if I were the one eating alone?  What if it were my child?  What would I want others to do?  And then the answers became simpler.  My embarrassment didn't matter at all.  What really mattered was that, even if just for a moment, I made someone else feel valued and loved.

And I am learning that the greatest things I can do are to change myself and then to use that change to influence others.  That's why for story time tonight, I read the post "Alone" to Randall and Chris.  It opened the door to some good questions we might have otherwise missed asking ourselves.

I can't predict the future; I don't know how my children will respond when I am not present.  But I can hope that I am planting seeds of compassion that will grow to influence others.  And I can hope that as you have read this post, you have been influenced as well, and that tomorrow you will go out to greet the world, welcoming and unafraid.

Because you know what it feels to be human and to want love.  And you know that you hold one of the keys to making a difference.


The question, "Why do children suffer?" has no answer, unless it's simply, "To break our hearts."  Once our hearts get broken, they never fully heal.  They always ache.  But perhaps a broken heart is a more loving instrument.  Perhaps only after our hearts have cracked wide open, have finally and totally unclenched, can we truly know love without boundaries.              
                                                                                 --Fred Epstein, M.D., If I Get to Five

Art Worthy

It's a photography exhibition from the United Kingdom whose gentle mission has universal appeal:

"Look at the individual and not the condition."

Every so often I read descriptions which delicately refer to people who "suffer from Down syndrome".  And every time it makes me laugh because I wonder about the people who seem to "suffer from normalcy".

Join us in watching this slideshow where no one seems to be suffering from anything and where the individual is recognized before the label.

Bailey and the other photographers continue to document new images of Down Syndrome through a generous grant from GlaxoSmithKline in the UK.  To find out more information and see the photographs, visit: shiftingperspectives.org.

Putting It All in Perspective

"He's doing so well," people say.

I agree and then look at Wade a little guiltily and think, "What if he weren't doing so well? What if he had more health issues?  What if I didn't have such a loving support system?  What if things were different? Would I still be able to cope?"

But then I think of all the fears of a previous life.  A time when I thought, "What if I have a baby with a disability?  What if I'm not equipped to live in this world?  What if the weights of these new responsibilities crush the joy from life?  What if I forever feel the cuts of fresh wounds as all of my baby's peers surpass him in every way?  What if we join the ranks of those beaten by circumstances, slogging drearily on and on and on and on?"

And I was afraid.

Ironically, though, the baby in my arms--the object of my fear--was not afraid.  He was not afraid of this inadequate mother, this imperfect environment, this disability world.  And as he has grown, he has continued to exhibit a strange and marvelous lack of fear.

He fears not the blackest dark, absolute strangers, deep water, great heights, or things that go bump in the night.

It is as alien to me as falling down a rabbit hole into Wonderland.

This innocence and lack of fear require me to be a bit more watchful of him than I might be otherwise.  Because of the world we inhabit, I must see the danger he doesn't.

But it is becoming a little less foreign as the years go by  to trust first and worry second.

And as I explore his world, I observe the delightful freedom that is his.   It it freeing to be happy with yourself and your limitations as well as with everyone else and their limitations.  It is refreshing to be able to love freely and generously without worrying about what others may read into your motives.  It is lovely to be able to greet each day, each stranger, each opportunity with such enthusiasm.

And in observing his innocent trust, I have realized how much inappropriate fear I have carried with me.

In the life that existed B.W. (Before Wade), I had a secret fear that God would call me to some obscure mission in a part of the world that I would hate.  And I would have to go, dragging my tracks shut in dogged submission to the Divine, getting up every morning and having to slay myself on the altar all over again.  Because wasn't that what God was about?  Saying "Go!" and making you hop to it, asking why it wasn't done already yesterday, and what were you waiting on?

Well, that was my niggling fear anyway.

And then came a baby with slanted eyes (like nobody else) and perfect trust (like nobody else).

Epiphany.


In the past five years, I have learned that this baby was perfectly suited for our family.  I have learned to trust that God looks at each of us as individuals and has a Designer wardrobe for each of us to don with joy!  I have learned that He cares about me and what I like to do and that His pattern is tailored to fit in a way I could never have dreamed.

And I have learned that if, for some reason, the events of Life would bring changes that would seem more difficult, God would be there ahead of us--leading us gently, not driving us with a whip--and that there would still be joy in the journey.

I knew all of that in my head before.

But now I know it in my heart.

And sometimes I wonder--those beautiful slanted eyes of love, the eyes that are alien to our family...

I wonder.....are they the eyes of his Father?

There is no fear in love, but perfect love casts out fear.  I John 4:18

Christian Royal Pottery

Christian Royal is a young adult with Down syndrome who has been making hand-crafted pottery since 2006.

Christian Royal Pottery from Michael Royal on Vimeo.

His pottery is sold in specialty shops in Charleston and Mt. Pleasant, SC with his trademark of a hand print with a single palmar crease.

Take a look at this gallery to see more of his work.

I especially like his slogan:

Stoneware 
              with the charm of things imperfect and simple.  

And, we might add, exquisitely beautiful.

There Is Something I Like about Punky

History is being made with the first animated cartoon featuring a person with a disability.  The show named Punky tells stories from the life of a little six-year-old girl with Down syndrome whose character is voiced by a young adult with Down syndrome from Dublin, Ireland.

Target Entertainment who acquired the global rights to sell Punky has promised to donate half of their global sales commissions to support Down Syndrome Education International's work to improve education for people with Down syndrome.

Come to Think of It...

Once in a rare while in the last five years, while playing with Wade, I have been startled to think, "He looks as if he has Down syndrome."

And then all in the same split second, I remember, "Ah, yes...he does."

It is always with utmost astonishment that I realize I've had such an exchange with my brain. When Wade was born, I thought, never, ever would I be able to forget that extra chromosome. It would, I assumed, be a rain cloud that would hover nearby forever. My own personal weather system with a gloomy extended outlook.

So now, when I experience those flashes of forgetfulness, it makes me laugh with joy. Who knew it would be this way? Who knew life with Down syndrome would become so routine, so part of the ordinary as to be at times only noticed in the same way you would have noticed that fleeting expression of Randall's so much like his cousin Kari, or the way Christopher tells stories with sound effects in the same manner as Uncle Kent.

Some time ago, I read a fascinating true account of a group of people living on Martha's Vineyard who had been affected by a form of hereditary deafness. By the mid 1800's, some of the villages exhibited deafness in as many as one out of four people. Because of this widespread occurrence, the entire community learned Sign language. In some amazing interviews later done by an anthropologist, old acquaintances would talk lovingly of their memories about the former residents without ever mentioning the fact that they were deaf. It was only when asked by the interviewer if these people were not, indeed, deaf that they would stop to think and then say, "Now you come to mention it, yes, Ebenezer was deaf."

I found that account extraordinarily touching.  How lovely to read of a world where people were not identified by their limitations, but were first humans, neighbors, friends, fishermen....whatever anyone else was.  They just happened to have that little quirk of being deaf.  And by learning the language of the deaf, others could enter their world freely and with such understanding as to hardly know who was deaf and who wasn't.

And so, it is with gratitude that I go on learning....about myself.....and about others....and about the bond that connects us all.

And it is in this journey of transformation that I feel with the poet John Magee that "I have slipped the surly bonds of earth,...put out my hand, and touched the face of God."

Clapping While the Heroes Go By

We can't all be heroes because somebody has to sit on the curb and clap as they go by. 

--Will Rogers

Today we celebrated the heroes that don't always get noticed.  We celebrated the ones who so often are willing to let the rest of us shine while they quietly take the backstage.  And we were honored to sit on the curb and clap for some real accomplishments: for hard work, for persistence, for patience, for showing us how to take time to watch the butterflies, for all the things that really matter.

CSRA Buddy Walk 2011

Visit with Horsefeathers the Clown

Castle to decorate

Crafts to paint

Beautiful wreaths made by Lori Bell, a young adult with Down syndrome

We met friends old and new.

It was a perfect day with beautiful weather and over 700 people coming out to join us.

Our little buddy Wade started the walk on his own two feet,

but ended it on David's shoulders.

A kind lady gave Wade a huge dog.  Doesn't it look real?

"The dog's name," said Wade, "is Murphy!"

Good-night, Murphy!  It's been a good day!

Wonderful World

The faces of Down syndrome...

*Photography by Coleen Barnhart

It's October Again...

...Down Syndrome Awareness Month.

Join us every day this month as we celebrate the epiphany of 47 chromosomes.

And as you journey with us,  may our time together become an educational walk that will change our lives forever.

I Am Russell's Voice

There's an elephant in the room.  I've sort of been avoiding him.  It seems that he's talked about, too often, with a sense of anger.

But anger isn't needed.  And Russell has a voice who has spoken gently and well.

Listen.

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.

World Down Syndrome Day

Today is March 21, World Down Syndrome Day.

From the International Down Syndrome Coalition for Life comes this wonderful video which includes a picture of Wade.

As you watch it, celebrate Life with us!

Whoever welcomes one of these little children in My name welcomes Me.    Mark 9:36

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

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

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