Day #082Let me just get this out there right now. I had a really rough time adjusting my attitude last night as I put Julia to bed. I’m not sure if it was the last of the stomach bug she’s been dealing with or the contrarianism that her whimsical toddler brain has developed, but let’s just say she was a hot, crabby mess. Don’t buy all of the angelic pictures of squeaky-clean and smiling kids with Ds that you saw on Facebook last week. They can be just as much of a pill as a typical kid.

I’m glad to say the night ended better than it started, but it was Mom that closed the deal and finally got her chilled out.

I watched all of the publicity and exposure that Down syndrome got on March 21st – World Down Syndrome Day (editor’s note: 3/21 is a play on Trisomy 21 – the genetic condition that is the basis of Down syndrome), and I am still blown away at the number of lives that have been touched in one way or another by these extraordinary people. I read the blogs by writers far more articulate than I calling for change and action – not just awareness.

We spent the day visiting Julia’s cardiologist and endocrinologist for her six month check ups. Everything is good, but now the battle front has shifted from heart valves and thyroid hormone counts to attitudes in schools and workplaces – stuff we weren’t even thinking of two years ago as Julia was recovering from her surgery.

As we have settled into the routine and begun to push into the possibilities of her preschool, I’ve honestly been a little mystified at the latent attitudes that would put my kid in a box in terms of her aggregate potential. At one time or another, sometimes from a well-meaning friend and other times from a school administrator refusing to execute the plain meaning of federal law, we and other parents have been told that we need to adjust our expectations of what our children will be able to accomplish.

Our children are often denied even the most basic physical and occupational therapies by insurance companies because they are deemed to have a developmental delay and will not progress in a way that is economically feasible. There are professional educators that have written off our children in the classroom because they have decided they will spend their adult lives never having regular contact with typical peers.

Some call it coming to terms with reality. I say it ain’t reality yet. There are challenges, to be sure, but my deepest conviction is that we have not even scratched the surface in terms of the contribution to the welfare of a community that any kid with Down syndrome can make. Perhaps we need to start redefining our terms of what those contributions are beyond earning potential and worldly accomplishment.

So one week after World Down Syndrome Day, I offer you one more voice of a parent of a kid with Down syndrome and how you can help turn the tide: We can handle the medical issues our kids have. We can push through the ill-executed policies of the school bureaucracy. We can deal with the realities of their condition as they unfold. In the end, every day is World Down Syndrome Day for us.

However…

What’s the one thing that keeps a parent of a kid with Down syndrome up at night? What has, more than once, jolted this father out of a sound sleep? The thought of Julia living her adult life excluded from the vibrance and rhythm of day-to-day life that the rest of the planet takes for granted. We’re afraid that our culture will not slow down and see the beauty that we see every day and decide to invite them in to stay.

So what do we ask? Meet our kids, look them in the eye, tell them from your heart that they, like every other human being on the planet, are hard-wired for struggle in life. But they are worthy of love and belonging.

Be not only aware of Ds, but act on that awareness. Make space – real, substantive space – in your life and your family’s life to know our kids and everyone with Down syndrome deeply, and gently resist the attitudes and institutions that keep them segregated from the mainstream of life.

I think you’ll find – as many have – the effort has a return on investment that will surprise you.

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Christmas Greetings from the Farm

On December 25, 2012, in Commentary, Life, by Chris

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It’s Christmas Eve at the farm on Willow Road. The house has long fallen asleep as I atone for my procrastination. I had every good intention to bang out this annual greeting in the light of day; but one marvelous distraction after another intervened. Visits with family and neighbors, eating way too much, quiet meadow walks in the first snowfall of the season, gift exchanges and a late night roughhousing session with Julia has its way chipping away at the time.

So here I am, bleary eyed and typing away feverishly next to a window, cracked open to let the chill of the night air keep me awake; but also in hopes that I will hear some spooky night sound that would quicken my pulse in my younger days.

WeatherVane-01Julia has lately come into the habit of waking early, sometimes as early as 5am, and this morning was no exception. I decided to let Jocelyn sleep and took Julia downstairs to snuggle in the cool darkness of the farmhouse in the comfort of her grandfather’s easy chair.

I love the moments of quiet that visits to the farm afford. They give me time and space for contemplations that simply will not deepen and grow in the shallow soil and frenetic pace of my daily life.

But as my daughter dozed on my chest, the thoughts that came to mind were not comforting ones. In the quiet of the pre-dawn light, I finally let myself embrace a taste of the pain to which I had been consciously numbing myself.

I’ve been watching, in horror, over the last several months as this world has seemingly been tearing itself apart. I pondered the empty arms of the parents of twenty Connecticut school children who are still in the throes of their grief. And I’ve watched as our nation – the world, in fact – struggles to right itself in the midst of the shock; our politicians and pundits scrambling for air time to push the “one agenda” that will supposedly be the solution to the mess we find ourselves in.

The tragedy this year has not been limited to people outside my community. I’ve been watching over the past several weeks, sometimes helplessly, as a nearly thirty-year marriage of a couple very close to me has quite simply imploded before my eyes.

In so many domains, in so many hearts, a piece of our collective innocence has been taken from us.

And I wonder what is it about the holiday that brings this melancholia out of me. Never mind. You don’t need to know how deep that rabbit hole goes; and any of you who have been following these over the last few years will know that it ends with more hope than it starts with.

Later in the morning, I read the backstory of an old Christmas carol that a friend had passed along to me the day before. I was surprised to learn that it was adapted from a poem that Henry Wadsworth Longfellow had written in the depths of personal despair. Having lost his wife in 1861 to a horrific and accidental fire that permanently scarred him as well, he would write that Christmas of how “inexpressibly sad are all the holidays.”

But that would not be the only sadness that Longfellow would experience. His eldest son, against Longfellow’s pleading, took a commission as a lieutenant in the Army of the Potomac and sustained a grievous wound in 1863 (he would eventually recover after a long convalescence). A year later, on Christmas Day of 1864, Longfellow penned a poem that began with despair and loss, and the seeming irony of the bells that tolled for peace in war’s midst…

     I heard the bells on Christmas Day
     Their old, familiar carols play,
          and wild and sweet
          The words repeat
Of peace on earth, good-will to men!

     And thought how, as the day had come,
     The belfries of all Christendom
          Had rolled along
          The unbroken song
     Of peace on earth, good-will to men!

     Till ringing, singing on its way,
     The world revolved from night to day,
          A voice, a chime,
          A chant sublime
     Of peace on earth, good-will to men!

     Then from each black, accursed mouth
     The cannon thundered in the South,
          And with the sound
          The carols drowned
     Of peace on earth, good-will to men!

     It was as if an earthquake rent
     The hearth-stones of a continent,
          And made forlorn
          The households born
     Of peace on earth, good-will to men!

     And in despair I bowed my head;
     “There is no peace on earth,” I said;
          “For hate is strong,
          And mocks the song
     Of peace on earth, good-will to men!”

And if Longfellow’s verse had finished there, darkness would have won. And in my moments of despair, it has been scarily easy to let myself give in and be utterly overwhelmed by the hatred, the senselessness, and the crushing grief all around.

But there is so. much. more.

In the midst of the pain, there are reminders of the beauty that will eventually overtake it.

As a whole nation and I were struck dumb by the shootings at Sandy Hook Elementary, while some commentators repeatedly asked if God was, at best, an absentee landlord and other commentators shot back with the standard right wing theo-social talking points, a friend decided that she was going to simply be different. Here is her Facebook post less than a day after the incident:

          This is my “Do Something” in response to my visceral maternal alarm bells.
          Hurting people hurt people. So I will love people. I’m going to be a one woman
          love flash mob. I will make eye contact. I will smile. I will love on my sphere of
          influence and help them love on others. It’s not just a gun control or mental
          health issue. I think its a love issue too. A fear issue. I will not live in fear
          and turn inward. Love always beats evil. Always. It has to. Join me. Share this.
          Smile. Love. Do Something.

I’m embarrassed to tell you that all I could manage at the time was to choke out four words in response:

Bravo, my friend. Bravo.

But for me, it was an early reminder that this season reminds us of: In love for us, God came to those who wanted no part of love so that the reorientation of history and the transformation of our futures could be made possible.

The small decisions to love are not all I stand in awe of. I have friends who are pursuing a creative way toward peace between Palestinians and Israelis. Others are pulling up stakes in the comfort of the suburbs to continue their lives in the neighborhoods of Detroit. Others have decided that clean water should not be a luxury for the Pokot people in Kenya and are working tirelessly to drill wells. Some of my favorite people in the world have committed their lives to build an enclave of hope and beauty in the midst of despair in Dowlaiswaram, India.

Perhaps the reminder of Love enfleshing itself in humanity on that unlikely day in that unlikely place is the invitation of a return to the innocence that we lost. It is in these and countless more reflections of that love where the last stanza of Longfellow’s poem is made manifest:

     Then pealed the bells more loud and deep:
     “God is not dead, nor doth He sleep;
          The Wrong shall fail,
          The Right prevail,
     With peace on the earth, good-will to men.”

Peace on earth, goodwill to all humankind. To that worthy mast, I have fastened my heart. To that improbable, inconvenient, overcoming, all-consuming truth of a here-and-now Savior (who I do such a lousy job representing), I commit my life to pursue.

And whether or not you decide to pursue with me, I think we can all agree that the world would be a better place if we decided to love first and do something out of an overflow of that love.

I give God thanks for all that you do, and wish you all the best for Christmas.

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Fulfilled…

On December 5, 2012, in Julia's Journey, Life, by Chris

The past few weeks have seen the fulfillment of a longtime dream for Jocelyn and I. You may remember over a year ago as I was thinking through the emotion of watching Julia’s Down syndrome becoming a little more evident and younger kids passing her by developmentally.

Well… it’s been over a year and a lot of work. I’ve watched Jocelyn settle expertly into her role as the mom of a kid with special needs, patiently working with Julia on strength and flexibility, gross motor skills and fine motor skills, and constantly keeping an ongoing conversation going to help keep Julia’s communication development on track.

There have been innumerable moments of joy and excruciatingly slow progress at times; but with the perspective of time, the progress has been most definitely there. We really do love the surprises that we often get when we realize Julia is using a sign to communicate what she wants and the wall of confusion and frustration between us crumbles just a bit more, or we see her determination as she works out a problem or becomes increasingly comfortable with her balance.

We also saw tantalizing moments of hope as we would watch her get up into a crawling position, only for her legs to sprawl out from under her for lack of strength. Hope began to build in the last few months as she made a few tentative motions – a hand, then another, a knee – as the movement became more and more organized. There were endless practice sessions as we did our best not to rush her, but to always encourage.

And then over the Thanksgiving holiday, it was as if a switch had been flipped.

One year, three months and sixteen days from the moment I felt that twinge of jealousy over another child crawling, our little girl crawled across the room.

Take a look:

I’ve said more than once that this whole adventure is on God’s and Julia’s timing, but this little milestone has been especially sweet. Thanks for sharing it with us.

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Pumpkin Fun

On October 28, 2012, in Life, by Chris

Just so I’m not all serious all the time on this blog, I wanted to share the fun we had last Sunday looking for a pumpkin. Julia had a blast messing with these massive orange things in the dirt!

I love watching the wonder unfold in her eyes now that she’s well along the way as far as interacting with her environment. When we visited family down in Ft. Worth last year, we took some time out in a pumpkin patch and she wasn’t nearly as interested.

We have a marvelous holiday season ahead of us and it’s always fun to begin it with Halloween. Julia will be dressed up as a flower this year, and I shudder to think of the next few years when she realizes she can get free candy from everyone in the neighborhood!

She finally started trying to play “ball” with it, but had a little more difficulty than usual…

But finally got it to roll… well, fall over!

I guess perseverance still counts for something!

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A Traveler’s Diary: First Day in Country

On September 29, 2012, in Commentary, Life, by Chris

I started this post this morning sitting at a coffee bar at Rajiv Gandhi International Airport in Hyderabad, India, waiting with the team for the last leg of our travel to see our friend Jaya and all of the good things he is doing. The thirty hours of travel thus far are taking their toll, so I apologize in advance if my writing is a little incoherent. I rarely sleep well on planes.

The heat of the morning is already beginning to stir the hazy air, distorting the tail flashings of the planes sitting on the tarmac in the distance. All around me the terminal is abuzz with activity – janitors, wait staff, travelers, baggage handlers. But amid the din I still noticed workers stealing away for just a moment to catch up on the news or sit in the shade of a jetway to have a snack with friends as the stink of aviation fuel hangs pungent in the air.

I’ve been coming to India for over ten years now, and I am still struck at the triple espresso shot of concentrated humanity that I get when I arrive. So many people. So many lives. So many wills at work that it amazes me that the culture hasn’t reached a point of collective insanity. Perhaps it has, but the haze of sleep deprivation while I’m in country dulls my senses just enough to let it remain just out of apprehension.

But even amid the chaos there is design and things get done. We experienced that most recently on our shuttle ride between the international and domestic terminal and the fearless bus driver who drove headlong into a mass of oncoming headlights on a sometimes one-lane tramway. To the horror of the foreigners and the inattention of the nationals, he initiated toward the way-less-than-bus-sized space between two oncoming trucks and there is an indescribable, fluid process of challenge, collaboration and mutual yielding until all are back on their way.

And it happens way, way more than you would see in the U.S. It suggests to me that there is some kind of internal order amid all the chaos that is so ingrained in the Indian psyche that It would take more than the millennia that forged it to find out what had been really created.

Everyone is on campus now and quickly bedding down to start repaying their sleep debt. You’ll hear more about the delayed flight, the bus breakdown the iffy power grid and the flower pedal charged reception tomorrow. But I did want to drop you a quick line to tell you that it’s great to be back.

The world is a book and those who do not travel read only one page. – St. Augustine

republished from cemindia.blogspot.com

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