How Do You Get to West Egg Village?

In Fitzgerald's classic novel, The Great Gatsby, the protagonist Nick Carraway had recently moved from the Midwest to a fictional village in New York.  As anyone might after such a move, Nick felt a bit alone at first until someone stopped him on the road one day to ask a question.

"How do you get to West Egg Village?" he asked helplessly.

I told him.  And as I walked on I was lonely no longer.  I was a guide, a pathfinder, an original settler.  He had casually conferred on me the freedom of the neighborhood.

In ordinary life, the purpose of questions is to receive help.  But in Nick's case, the question not only provided help for the one asking, but also for the one answering the question.

Most of us arrived in the land of Trisomy 21 with dozens of questions and no answers.  We felt alone.  And frightened.

But as we forged a way, we found others who could help us answer our questions. During the journey, we grew and changed and eventually learned that even we could begin to answer some simple questions for someone else.

And we felt alone no longer.

The best thing, then, about "31 for 21" is that in explaining a few answers to someone else, we are, like Nick, conferred the freedom of neighborhood in a much broader sense than otherwise possible.

Our family belongs to a small Mennonite church.  From the beginning of our journey, the people of our community have listened as we have learned.  They have traveled with us, not because they had to, but because they wanted to, not because they were governed by some constitutional law of equality or by some institutional regulation of the church, but because they were governed by the enduring principles for unconditional love which God has given to us all.

Sometimes I feel an uneasy guilt to be surrounded by so much support while we hear of others who are truly alone.  We are aware that because of the integrity of the people who surround us, we have been cushioned from many of the blows others must take.

And so, every year when October comes, I wish in a small way to broaden the scope of understanding beyond our community.  With the advantages of modern technology, neighborhood need no longer be confined to those in our physical location.  And I hope that by sharing the things we are learning, a greater sense of neighborhood will be conveyed not only to those families with Trisomy 21, but also to those without.

It is, I think, not too far beyond the realms of possibility to dream that once again sharing the way to West Egg Village will be beneficial both to the stranger and to the villager.

Imagine a World without Contrast

The slogan of the National Down Syndrome congress is "We are more alike than different."  In choosing this campaign, the organization wishes to remind us that we are all part of the race called human.  They urge us to find the common thread that connects us all.

We need to be reminded from time to time of the great truth in that statement. America has often been referred to as the melting pot, a place which welcomes and thrives on diversity.  But, we dare not forget that it is also a place with the ugly scars of racism, segregation, and abuse.

As we strive to break down stereotypes and open the gates to understanding, several thoughts keep coming back to me.

Recognition of similarities is not equal to condescension or pity for an inferior people.  We must remember that the darkness of our assumed superior race didn't just exist during the times of atrocities against the early Indians or the African slaves.

The same darkness exists today inside each one of us and must be recognized before we can be truly compassionate.

Compassion is not a relationship between the healer and the wounded.  It's a relationship between equals.  Only when we know our own darkness well can we be present with the darkness of others.  Compassion becomes real when we recognize our shared humanity.

                          --from The Places That Scare You by Pema Chodron 

Elizabeth Elliot has said "I used to say, 'We are all equal in the sight of God; here let me help you up to where I am!'  But now I know, 'We are all equal in the sight of God; God have mercy on us all!"

But I feel a bit uneasy at telling people to "look at how alike we are", when, in reality, many of the things I most admire about Wade are the ways in which he is different from me.

And for this reason, as we aim to see beyond stereotypes to the recognition of a shared humanity, I believe our slogan needs to go farther than just acknowledging that "we are more alike than different".  

We must also learn to appreciate the things that make us different.

Compare these two pictures.  

The first picture is too light; the second is too dark; each has too much sameness to display anything very pleasing to the eye.

 But with a balance of dark and light, the beauty of the true picture emerges.

In other words,

contrast enables us to see.

The things that make you different from me are the very things that I must learn to respect and appreciate. And vice versa.  It is the same principle Steven Covey wrote about in The 7 Habits of Highly Effective People:  

Seek first to understand, then to be understood.

As I seek to understand our differences, I develop better vision for the world as God intended it to be. True humility recognizes that each personality adds a bit of color to a gray world, regardless of your chromosomes.  

Fifty years ago, Madeleine L'Engle wrote about a terrifying planet in A Wrinkle in Time.  At first glimpse, the underlying terror was not apparent.  But as the story moves forward, the reader is gripped with the horror of living in a place of unaltered sameness controlled by the frightening monotony of a mechanical mind.  

It is true that some repetition (sameness) gives us a sense of security whereas confusion tends to disorient us.  But either extreme is terrifying.  Life needs a mixture of likenesses and differences in order to help us better see the whole picture.

A full appreciation of this variety, however, does not come about by demanding that you see our likenesses.  Nor does it flourish if you only see our differences.  

Someone else said it best hundreds of years ago.

Treat others the way you would like to be treated.

And it is only through application of this guideline--God's standard of love for all people--that we can truly have both diversity and unity.

Just for Fun--Old Video

After waiting a long time to hear Wade speak, we were all delighted when he could finally say, "I love you!"

But then he decided he loved the speech therapist better.  And so he would only say, "I Sara!" with her name whispered as if it were sacred.

His brothers decided one evening back then to make him say, "I love Chris!" or "I love Randall!"

It didn't work.  But it did make fine memories.

A Different Kind of Success

This painting is one I would love to hang on my wall.  I find it beautiful for two reasons: because it is lovely and because it was painted by someone with Down syndrome.

I don't need to tell you that Peggy LeAnn Tyler is accomplished.  You can see it in the art she is holding and in the art on the wall behind her.   You can read her success story here.

In recent years, more stories like hers are being picked up by the media and, as we read them, we find ourselves deeply inspired and unusually moved.

All parents have dreams for their children, but for those of us who have given birth to a child with Down syndrome, we may feel that our dreams have been shattered. We read stories like this and we realize that there are still goals to inspire us.  But we also realize, eventually, that for every individual with Down syndrome who becomes a "success" story, there will also be many individuals who will never be noticed, never achieve anything of fame, never be labeled "high functioning".

And what then?  What about "those"?

Culture has ingrained within us the paradigm of being identified by what we do rather than by who we are.  We hear people say, "I'm a doctor, psychiatrist, musician, artist, dancer, etc." and we think that by hearing the title we know who they are.

Sometimes, then, we project these cultural images of success onto our children with disabilities, never realizing the damage we may be doing by putting them into situations that please us rather than them.

Does putting Sandy on the stage with the other dancers make her a success?

Does allowing Johnny to be a model for Target ads make him a success?

Does telling Kayla she can be anything she dreams make her more apt to succeed?

There is nothing wrong with striving for dreams and encouraging children to be the best they can be.

But while we are dreaming, let's not forget the noble things of Every Day that are just as worthy to achieve (or more) as all the accolades of fame.  

Responsibility, good manners, respect, completion of household chores, empathy, encouragement, and genuine love:  these achievements are quiet ones.  But they are also honorable.

Our children do not need a place on the world stage in order to be a success.  

They do need us to allow them to shine at the little things--dusting the house, taking out the garbage, folding the laundry.  We need to let them know that by contributing essential jobs within the family they are just as accomplished as those who command the attention of the crowds.

Wade has a pretty little girl friend at school.  As most girls do, she has a reason for the boy she likes.  She told her mom,

"I like Wade.  He pats my back when I fall down."

Some of us weren't designed with a world stage in mind.  Some of us are here to pat the backs of others when they fall.

If that is the sole legacy of Wade's whole life, I think it will be enough.

Those Who Were Seen Dancing

Melony Stevens Photography did some wonderful volunteer photos for our Buddy Walk yesterday. Melony is one of those people who met an extra chromosome one day and fell in love. She became a nanny to a little girl in our support group and quickly gained an appreciation for the goodness of life with a little extra.  Since then she has volunteered to do free photo sessions for kids in our support group.  She captures our children with great joy and love because of the joy and love within her.  And therefore she sees beauty wherever she goes.

"But what is there to celebrate?" someone asked me not long ago.  Look through Melony's eyes and you'll see.

And those who were seen dancing were thought to be insane 

by those who could not hear the music.

                                                            --Friedrich Nietzsche

Wade's Favorite Day of the Year

Of all celebrations, Wade likes the Buddy Walk best.  He treasures the shirt he gets each year, preferring to wear it above anything else in his closet.  With between 500 and 600 participants, today was a day to be cherished again.

The oldest buddy there was 36.  He loved the face painting and his shirt too.

The youngest buddy was 2 months, a precious bundle all wrapped up for the cold morning.

Wade loved the mascots--USC Aiken's Ace the Pacer and Auggie of the Augusta Green Jackets.  Apparently, we were having too much fun to get many pictures though!

As always we are blessed by the many people who generously donate for the cause, from talented face painters to providers of food  and places to bounce.

Publix even provided hula hoops.

Directions not included.

   

Wade's face painting is still beloved at the day's end...

...right next to a dear dinner roll!

Blessings to all the Buddies who continuously enrich our lives.

Secret Sparkles

They are called Brushfield spots---light-colored speckles within the iris.

About ten to twenty percent of the typical population may have them.

Eighty-six percent of people with Down syndrome have them.

Because Wade's eyes are so dark, his Brushfield spots are not visible except in very bright light.  In the picture above, they were slightly apparent when he was just a few months old.

I like to think of them as hidden sparkles that carry wonderful secrets from God to the People Who Know.

Several years ago, an advertisement  offered contacts with Brushfield spots, so if your eyes didn't naturally have sparkles, you could buy them.

But I don't think the secrets were included.

Recent research suggests that individuals with Down syndrome may hold the key to the mystery of Alzheimer's disease.  The answer to unraveling the mystery and finding treatment or a cure just might be in that extra chromosome.  And that would be a secret all of us would like to know before we get old enough to need it.

Who knows what other secrets there are among the sparkles?

Those who are cynical will belittle, the scorners will mock.

But behind the sparkles, I think God might be winking.

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Hallucinating Again and Seeing Better

"Mom, where is the nutmeg?  I see garlic, ginger, Italian seasoning, marijuana leaves, mustard seed..."

Marijuana leaves?!  Well, that would explain why we've all been feeling so euphoric!

To any concerned authorities, please note the referenced marijuana pictured below:

And please do not ask me why the term marijuana is part of my son's familiar vocabulary, but apparently the word marjoram is not.

And somebody got new glasses today...

...because he needed them!

Now that's much better!

Because They Prayed

"I'm fantastical!" said Wade this morning.

But we kept his afternoon ENT appointment anyway because, with Wade, it can be difficult to tell the difference between fantastical and sick.
                                           
He's been experiencing nasal congestion the last couple of weeks, and with no tubes in his ears at present, we have to keep a close watch out for fluid build-up..  Wade takes Zyrtec and nasal spray at bedtime year round in order to keep his head clear. Because of his tiny Eustachian tubes, any time he gets congested, he ends up with fluid that won't drain on its own.

He has had four tubes in the right ear and two in the left ear (plus adenoid and tonsil removals).   After the second tube came out of the left ear, it left a perforation that grew to encompass 60% of the ear drum.  It was patched temporarily during subsequent surgeries, but the patches never stayed long enough for complete healing to take place.  This had some effect on his hearing because of less surface area for vibration.

And so his brothers prayed faithfully every evening for Wade's ear to heal.  And I prayed without faith (or ceased praying) because I knew it seemed very unlikely that it would heal.

But I am humbled.  Today Dr. Vickery saw no sign of a perforation in the left ear.  The ear drum is functioning as a healthy one and his hearing is normal.  Dr. Vickery said, "I did not think that would happen."

In addition, Wade appears to be fighting off this congestion on his own.  The right eardrum was not moving, but didn't appear to have fluid behind it, so we will wait and watch to see if it will improve without antibiotic. This will only be the second time Wade has ever been able to fight off the fluid on his own.  And his tiny ear canals are growing also.

And I of Little Faith am praying thank-you prayers and apology prayers and please-help-my-unbelief prayers all at the same time.

Which all sound pretty much like this:

Dear God,

You're fantastical!

The Lady

Sometimes It's Difficult...

May I watch Berenstein Bears again, please, ma'am?

Okay!  How about Bob the Builder?

(Oh dear, sometimes I almost have to shut my eyes in order to be able to say no.)

And the strangest thing of all is when I say no and he says happily, "Okay, great!!  Thank you!"

(God probably thinks I should be taking notes.)