Every Day is WDsD

On March 21, 2016, in Commentary, Julia's Journey, Life, Personal, by Chris

CrazySocks

My Facebook feed has been blowing up over the past 24 hours with all kinds of videos, images and well wishes from our community. It started last night with a video from a family that has been walking alongside us – then a text message from the principal of Julia’s school telling all of the students to wear their craziest pair of socks as the beginning of a more intentional celebration for a sliver of their community.

It’s World Down Syndrome Day – the one day of the year it is universally cool to be a friend of someone with Ds! So allow me to put on my “crazy socks” and tell you a little more of what’s going on from the perspective of a man whose life got ambushed by a little girl with an extra chromosome hitchin’ a ride with the typical 21st pair.

If you’ve been hanging around my social media feeds for any time at all, you’ve been acquainted with Julia. As a freelance photographer, I try to regularly put out a picture to let folks know how she’s growing. You’ve seen her through the walker stage into preschool, the endless hours of therapies, and the ubiquitous “giraffe horn” hair buns that Jocelyn fashioned to keep her from chewing on her hair.

We’ve received unceasing encouragement from all of you over the years – from the comments on how cute and precious she is to the challenges we hear from you to press on through the adversity of navigating the bureaucracy of service providers to get her the help she needs. Sometimes I even wonder if Julia’s social media following outpaces Jocelyn’s and mine combined! Such is the life of a little girl with her own entourage of stylist (Jocelyn) and publicist (me).

But even with the love we get from our community, I’ve noticed a change in the way strangers interact with her. There is now just a tiny minority of people who don’t quite know what to do with Julia when she busts into her ballet routine in the middle of a crowded mall or expresses her still inarticulate but very clear frustration with directions. Don’t get me wrong – there are still loads of smiles and comments on how beautiful she is. But sometimes I hear the unspoken “… for a kid with Ds” at the end of the compliment. There is a quiet standard I hear that seems to be applied to all school age kids where “typical” becomes “normal” and “normal” slides into “expected” and these young souls are filed on to the treadmill of striving and competition that will follow them through adulthood. It’s an atmosphere that my kid just isn’t built for.

We’re getting to the stage where, just like any kid her age, Julia’s innate cuteness is starting to wear off and the real differences (along with some of the attendant social embarrassment) are becoming more pronounced. Julia is very tentative and even fearful of high-energy situations that she’s unfamiliar with. She is a creature of habit whose desire for quiet and television time can torpedo an evening social gathering. And we are still fighting for every syllable in her speech therapy – the progress is real, but painfully slow.

I’m sure that some of this is due to my own hang-ups. I still have to remind myself that despite a world bent on progress and its hostility toward anything or anyone that isn’t economically value added, there are people – lots and lots of people – who know that value isn’t solely measured by productive output. There are those wonderful people who love the differently abled for their intrinsic humanity and not the packaging they come in. They’re willing to bear with our Julia because she belongs to them as well – no matter what her mood happens to offer up at the moment.

One thing you know you’re going to get: pure, unfiltered, no-hidden-agenda Julia. Sometimes impolite, other times a fist bump or a hug – all of it is very, very real. This kid has no guile and you never have to wonder what she is feeling. And in a world full of agendas and deception, that can be as refreshing as it is frustrating; because with every interaction, I have to decide if I am going to press my agenda or enter into her simple desires.

Julia forces me to step off the treadmill of my agenda and engage with hers. She encourages me to be a little less selfish and reminds me that my story is only a part of the larger story. How can that be a bad thing?

So here’s to our girl – with all of her love, simplicity and challenges. With a community like you behind us, we get to experience the love and support of World Down Syndrome Day all year round!

Julia-WDsD2016

 

 

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Christmas Greetings from the Farm

On December 24, 2014, in Commentary, Life, Personal, by Chris

Misty Field
It’s Christmas Eve at the farm on Willow Road. We’ve had some unseasonably warm weather here over the last few days with a lot of rain and mist on the fields – fallow except for those planted with winter wheat. We saw our neighbor Jim Laramie earlier, who stopped by with the most amazing homemade toffee. He told us it was his first year trying his hand at it, and all I can say is that it was quite a success. We are even now hovering around the computer for the Skype call with our friend Malcolm from the U.K. There’s a fire in hearth, cranberry glazed pork tenderloin waiting for dinner; and after the maddening rush of Christmas preparation, we’re finally feeling the permission to breath again.

I have to admit at the outset that I came into this season with a tiny bit of dread. It wasn’t necessarily the quickening pace of our lives with all of the holiday expectations (we’re still “that family” that puts out 150 or so Christmas cards – and the list is only growing!). Actually, it took me a while and some real soul searching over the last month or so to put my finger on it.

The first string I picked up and followed was the realization that I wasn’t anticipating the Christmas gift exchange. Normally I’m at the front of the line with a list of the things I want; but when Jocelyn asked me what I wanted last month, I couldn’t come up with a thing. Even scarier, it wasn’t because I was feeling any sense of contentment with what I had. As I pondered it, I realized that it was a weariness of this practice of endless acquisition that we westerners seem to be locked in. I had simply become “gadgeted out.”

I also spent a lot of time thinking through my holiday malaise as I listened to Christmas songs on the radio (and yes, I waited until after Thanksgiving). It’s amazing how they can conjure up so much sentimentality with the warm images of family coming together and the anticipation of Christmas morning. After years of great family memories, the older generation’s passing and exodus of the younger generation across the country have thinned out the celebration of Christmas on the farm. What’s more, it felt as if the songs I once enjoyed became an inventory of the experiences that were more in my past than my present – or my future.

And I very well could have stayed in that funk, but I believe I was quite literally delivered by a Christmas carol you’ll rarely hear on the radio. Dating back to the 12th century, the Wexford Carol is one of the oldest carols that we know of in the European tradition; and it was the first verse that reached out and captured my heart:

Good people all, this Christmas time,
Consider well and bear in mind
What our good God for us has done
In sending his beloved son
With Mary holy we should pray,
To God with love this Christmas Day
In Bethlehem upon that morn,
There was a blessed Messiah born

To consider well and bear anything in mind can be a real trick in the crush of the holiday treadmill – much less the spectacular thing that happened in that town in a backwater Roman province no one had ever heard of. How easily we – I – forget. But in those simple words I was reminded again of the gift that outweighs anything I could have gotten from Amazon. Amid all of the wonder that our holiday-industrial complex offers, this was the thing my heart longed for.

And somewhere in the second hundred playbacks of “Happy Holidays”, I started to realize that instead of mourning the loss of all of the family experiences of years past, it was far more life giving to be grateful that I ever had the opportunity to have those marvelous experiences in the first place.

Even better? Out of an overflow of that grateful heart, I need to pour myself out to give others a beautiful Christmas memory. So with my heart steeled with that conviction, let the real holiday begin…

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Christmas Greetings from the Farm

On December 24, 2013, in Commentary, Life, Personal, by Chris

Christmas Wreath
It’s Christmas Eve at the farm on Willow Road. The temperature barely got above 20 degrees today, but a strong sun melted off the dusting of snow we got last night and its reflection off the white and fallow fields made it hard to look outside today. But now the light has mellowed and the afternoon shadows have lengthened, and I sit in the living room as a Christmas Eve dinner of salmon with Meyer lemon is being prepared (don’t worry, I’ll be doing the dishes!). We may even get down the road later tonight for a bowl of Jim Laramie’s marvelous homemade gumbo!

The quiet and much slower rhythms of the farm are a welcome change from the frenetic pace of the city. Most of the farm implements have been covered up for the winter and the farmers in Saline Township take a grateful sigh of relief now that the season’s crops have been harvested and the winter wheat has been sowed.

It’s interesting and a little sad, though, that the Christmas rhythm out here got a little slower this year. We normally would have been out the door not long after breakfast today, making a round of visits to the older family – especially my aunts. I said my last goodbyes to my Aunt Cora a month or two ago, and her sister Pat has moved down south to be with her children. And so our family’s world got one orbit smaller this year.

I’m seeing it along Willow Road as well. One by one, the dairy farmers let go of their herds until the nearest operation is three or four miles away. Our neighbors (and my adopted parents) have finally divested of their hog operation after nearly fifty years. After abusing their bodies for so long, they said that all they would feel was achy after a long day tending the farrowing house and finishing barn.

Even my Dad is getting to an age where he doesn’t want to bother with a lot of things these days – and at nearly eighty-three, he has every right. I came out a couple of weeks ago and got a Christmas tree up and the traditional wreath on the house, more for my own nostalgia than anything else. Now that he has throttled back on his volunteer hours up town, many of his days are spent with crosswords or books in the quiet of the farmhouse, coffee or an occasional breakfast with friends and afternoon cribbage with his girlfriend, Sue.

And it would be really easy for a guy of this age to begin to despair of life. With friends and family of his generation passing away and the natural physical inconveniences that come with age, retreating from life can seem like a reasonable choice between a lot of unsavory alternatives.

Dad RecordingBut it took one of those silly recordable storybooks you buy at the Hallmark store to remind me of a more hopeful trajectory of a life well lived. Jocelyn had picked it up last year during the post-holiday liquidation of all the Christmas merchandise. She brought it along to the farm, intending to record the story for Julia to follow along and learn about the Nativity; but I suggested we have Dad do it. It’s not much fun to think about, but one doesn’t need to have skill in actuarial math to realize that we will outlive him. I thought it would be a nice way for Julia to remember her grandfather on a special day.

So Dad and I sat down at the kitchen table while Julia was napping and recorded the story; but the weight of it didn’t really hit me until later when I played it for Jocelyn. It was a tinny, digitized recording depicting a childish, sentimentalized version of Jesus’ birth, but its pricelessness brought us both to tears within the first few words.

Behind that simple story – from the promise that love finds a way to the final words of my father’s love for his granddaughter – was the voice of nearly eighty-three years of experience. Those years had seen many things – marvelous and tragic – from living through the Great Depression and a world war to serving his family and community through the country’s meteoric growth. There were, to be sure, glimmers of the prosperity in his voice, but it was the heartbreaks that he lived through that imparted its weight and depth.

And it was the story my father read of an improbable birth in a place fit only for animals and castaways that reminded me: despite the frustrations of life and the slowing, painful pace of age, Love played the ultimate trump card that overcame the separation from everything good that is the ultimate fate of us all. Love did not give up on us, even while we were still shaking our fist in defiance. Love loved anyway, sacrificed anyway, became vulnerable despite humanity’s track record and pitched his tent among the lowliest, yet could still run circles around the mightiest.

Love came not to condemn us – any of us – but to save us. Because each life that walks this planet is of inestimable, intrinsic worth.

And I heard – again – the wonder of this Story read in the quavering voice of my father on a cold Christmas Eve.

I give God thanks for all of you and wish you all the best this Christmas.

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Christmas Greetings from the Farm

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

Banner#2-01

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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Pumpkin Fun

On October 28, 2012, in Life, Personal, 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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