Christmas Greetings from the Farm

On December 24, 2017, in Commentary, Life, by Chris

It’s Christmas Eve at the farm on Willow Road. Those of you who have followed these posts over the years know what a marvelous pause the farm is in the life of our family. Time seems to get so compressed in the weeks before Christmas and all of the preparations and engagements that compel us to make just one more commitment.

But now we’re at the place of my birth, with bad cell coverage, no television, no internet and no distractions. We can simply be together to prepare meals, try to make a dent in the Christmas cookie supply (still working on that), visit the neighbors and take in the luxurious quiet of the land lying fallow and still.

There was a light blanket of snow when we got in yesterday; but the sun melted most of it away in the afternoon, painting the trees across the field in rich ambers and butternut. We woke up, though, to a completely different situation. The snow started around noon as we were wrapping up one of our many visits to our neighbors and friends; and by mid-afternoon, it seemed we had a good old fashioned snow storm on our hands.

It’s still coming down as I write this. I even excused myself from dinner preparations to take a walk in the woods to experience its silence. There was little to break the hiss of the landing snowflakes, except a couple of neighborhood dogs in distant conversation and an intrepid nuthatch winging about the trees in search of her next morsel.

I wish I could share some insight or encouragement that I found in that solitude and silence – some neatly-tied-up-in-a-bow wisdom that will lift your spirits. Those of you with whom I am in more intimate contact will know that it’s not been that kind of year for me. It’s been “dig deep” time for months now, and I’m honestly wondering how I’m going to bounce back from it.

I was out in the cold until I couldn’t feel my hands, but the same frustrations were with me. So let me lay them out in all of their embarrassing glory:

Frustration at my father’s increasing frailty of mind and body.

Frustration at the growing developmental gap between Julia and her peers.

Frustration at the marriages blowing up around me and the inevitable collateral damage visited upon the youngers.

Frustration at officiating the funerals of good men struck down far too soon.

Frustration over the seemingly intractable divisiveness we find in every domain of life.

And despair over a world that seems – in my current experience, at least – to be devolving into chaos and selfishness more than growing into something life giving and beautiful.

A wise friend told me once that sometimes the spiritual walk is putting “one damn foot in front of another.” But that roiling anger that I and many others wrestle with seems to make everything in life just a little tougher.

So I’m going to let you listen in on a conversation I’ve been having with myself of late – sometimes half heartedly, sometimes with a bit more conviction. It orbits around an oracle of Old Testament prophecy that I’ve clung to for the past few months:

For the LORD your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.

For this season, I am clinging to an idea proposed eight centuries ago:

As bad as a situation can be, I’m not alone in it. It might not be the “salvation” I would choose, but God is always working to reconcile, redeem and remake. Even in my worst and most embarrassing moments, he is audacious enough to like me anyway.

Now comes the big one (for me anyway). God’s love can calm my gnawing tendency to project a catastrophe into every situation, give me perspective and discernment to know when I can and cannot do something about whatever frustration presents. And by the way, the ones I enumerated above, I have no control over whatsoever.

This love comes out in a song of life and beauty that still confounds me – even after twenty years in pursuit of understanding it more. I still struggle with truly receiving love like that; but it’s reflected in the steadfast loyalty I have known in my relationships and the whimsy of the little exchanges with Julia. I’m borne from my despair in the intentional practice of gratitude for those small gifts of clarity.

The season we celebrate brought all of this even more into life with God actually living among us in our frustration and fear. And it is the hope that there might be a larger, more redeeming story piercing into the mess of ours that I cling to. I bid you peace in the knowledge that we don’t have to have it all figured out (I know – that kills me too), and that there might be Love living among us as we put one foot in front of another.

Or I could simply say, Merry Christmas.

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Christmas Greetings from the Farm

On January 4, 2017, in Commentary, Life, Personal, by Chris

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It’s Christmas Eve at the farm on Willow Road, and the tired December sun has given up its fight to burn through the cloud cover. The dreariness of the day makes the sky almost indistinguishable from the snow covered fields were it not for the trees along the fence line. From a distance, everything has a monochromatic feel – as if the trees were penned into the horizon with India ink – but you can still discern the burnt sienna and nut brown of the woods across the west yard.

Jocelyn has outdone herself yet again with tonight’s meal. The smells coming out of the kitchen as my Dad and I played our cribbage game almost made us turn down my childhood neighbor and adopted mom Marilyn Gordon’s famous soft pretzels (ed. note: we each kept ourselves to one). The kitchen at the farm in the afternoon is always a marvelous center of activity, and its output makes packing the car with seemingly endless shopping bags the day before worth it as we head out from Detroit.

We always enjoy seeing livestock in the pastures and feed lots on our drive out from town and we often take a more scenic route to pass all of the farms that still have animals. It’s such fun watching Julia’s excitement as she points out the cows or horses; but winter draws them closer to the barn and out of sight like the farm implements sitting quietly in the tool sheds awaiting spring.

As appealing as the pasture can be, the snow and cold has a dampening effect on the ambitions of even the most adventurous heifer and drives her to seek the companionship and warmth of her sisters as they huddle together in the shelter of the barn. And if there were a monologue in the mind of that heifer, it would go something like, “June is for striking out and finding that untouched patch of clover. December is for being with my herd.”

I am often sadly forgetful of that rhythm of “being with” until I get to the farm, clear the snow from the walk up to the back porch, take my eyes off the thousand things I normally do and enjoy an hour of reading books with Julia in front of the fire. She picks a book, curls up next to me and I read. Sometimes she complains as I try to get her to say the words with me (her speech apraxia is still a challenge), but we are always right next to each other in the struggle.

It’s not until I steal my attention away from the daily and relentless voices trying to sell me something that I realize again the sacred nature of an exchange as seemingly mundane as reading together with my daughter. And it is that marvelous, connecting word that leaves my heart fit to break both in regret of past missteps and strange anticipation of the future:

WITH

It is the deeper understanding of the “with-ness” of God that I’ve been wrestling with for the past several months; and I’ll be the first to admit that I’ve only begun to really understand the length and breadth of its meaning. At the beginning of that journey, let me share a little of what has been revealed to me. And let me warn you up front – this is not the easiest read…

It is all around us now in the season we celebrate. It was foretold in ancient dreams of long dead prophets:

Behold, the virgin shall conceive and bear a son, and they shall call his name Immanuel
(which means, God with us).

I’ll not debate the points of religious interpretation that often come with throwing around scriptural references. What I humbly offer is this: At just the right moment in history, when humanity had forgotten, rejected or simply given up on the hope of a God that was more than an absentee landlord, the WITH of a triune God enfleshed itself to erase any doubt in its charitable intention and ultimate authority.

And though there are wondrous times where the membrane is pierced between the infinite and the “here and now” of life, I’ve realized that there are many things Immanuel does not necessarily mean:

  • It does not always mean “God came and fixed everything.”
  • It does not always mean “God saved me from the scary diagnosis.”
  • It does not even mean “God calmed my fear.”

But it does mean that there is a promise that the divine WITH is exactly that – even in the most seemingly hopeless circumstances. Even when we feel most alone. Even when in our pain our soul chafes against the proposition of a loving and concerned Other.

The divine WITH is also shockingly powerful in its implications:

  • It destroys the divide between entrenched worldviews screaming at each other across the gulf of seemingly irreconcilable poles.
  • It silences critical voices that set themselves apart in their conceited exclusivity.
  • It demands that we move out of our nervous devotion to our own carefully constructed echo chambers and into the uncertain tension of actually listening to one another again.

And it is the thing that my daughter most wants from me that I find hardest to give in my day to day treadmill of the things I think are so important. Often, sadly, more important than her. So maybe I need to slow the hell down and simply be with her and give her the engagement that she so genuinely craves.

So in my admittedly crude understanding of Immanuel and even after nearly twenty years as a student of Jesus, it seems that there are two challenges that unfold that I humbly share with you:

In this season where we seem to naturally draw together, be WITH the herd of your birth or the herd of your choice or the herd you happen to find yourself in. And if you are in a season of seeming solitude, please know that you are still in the herd of humanity, wholly loved and pursued by God so that WITH can be experienced by all.

But there is also the challenge (and this one is a tall order for me, to be sure) to welcome the stranger and be open to the different herd that WITH presents to you. It seems so counterintuitive in this era of shrill divisiveness in nearly every domain of life; but I believe with a deepening conviction that something better is on the other side of our embracing the WITH.

I give thanks for who all of you are in my life and wish you a Merry Christmas.

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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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Four World Down Syndrome Days have passed in my daughter’s life, and this will be the third one I’ve written about. I missed the first one because it was only a couple of months after her heart surgery when we were still taking in how marvelously normal things were becoming.

A lot has happened since then, and I’ve been scanning through some of the other blogs of parents of kids with Ds (it’s all but compulsory to do a post on 3/21 – I’m no different) to hear what they’ve been saying. Much of it has been personal, some of it political – all of it has been eloquent. I hope I can offer the same eloquence, but I will admit to you that I was tempted to let the day go by unrecognized.

But a writer friend of mine reminded me this morning over coffee that one voice left unspoken will leave an uncountable number unblessed for the hearing. I’m really trying not to be overly dramatic when I say this; but I really wasn’t obligated by the rest of the Ds community to write. At that moment, I felt compelled by something much deeper to speak into the din to change a few minds and maybe make a few lives better.

The message is that important, but I’m not sure how much of a blessing it will feel like on first reading. I would be remiss not to warn you in advance that this was a tough message to write and, I am sure, will be just as hard to read.

Most of you know that I’m a pretty avid photographer, so I spend a little time every day flipping through various articles to keep up with what’s going on in the industry. A few days ago, I came across a story about a photojournalist who got access to three psychiatric institutions in Serbia and Kosovo while he was living there between 1999 and 2002.

My internal censor told me that I really didn’t need to see it; but after some hesitation, I clicked on the link and did my best not to let the images that followed steal my soul.

It didn’t work. They can only be described as worse than anything I’ve seen from the Nazi concentration camps. Why? Because by the time the Allies liberated the camps and started documenting the atrocities there, the children were all gone.

But as I looked at the faces of some of the children (some of them clearly with Ds) in those beleaguered, underfunded wards, I admit that I asked God about the broken lottery that landed those children there and my daughter Julia in a modest suburban home in Michigan.

I found out later that as a result of the journalist’s work, funds were raised and NGO’s intervened to improve conditions; but in that moment, it scarily got worse.

At first, I was glad that our society has become so enlightened over the last several years:

  • The average life expectancy for a child with Ds has more than doubled in comparison to age 28 in the mid-1970s when institutionalization was still the predominant answer.
  • Public school inclusion of children with Ds and myriad other disabilities is the law of the land, if not always the practice in the schools.
  • The overwhelming majority of children with Ds learn to read and write and can eventually gain some level of independence.

I felt better knowing that the institutions (in the U.S., anyway) were shut down and we were no longer warehousing our differently-abled children.

But then as I was sitting there pondering it, a quiet voice inside of me answered…

We’re not warehousing them anymore. We’re killing them instead.

When I’ve poked around the internet in the past looking for the abortion rate of prenatal children diagnosed with Ds, a figure of 90% often bubbles to the top of many searches. It turns out that it’s not a true number, but the reality is not much better.

A systematic study of pregnancy data published in Prenatal Diagnosis in 2012 – widely considered the most reliable to date – put the number at closer to two out of three pregnancies being terminated after a prenatal Ds diagnosis. And with the development of new non-invasive blood screens earlier in the pregnancy, the opportunity is only going to grow.

Now I don’t know where you land on the abortion debate; but whether you agree with it or not, the fact remains that there are a whole lot of children with Ds that would have lived except for direct human intervention before they were born. And if they had been born and lived, perhaps they might have surprised their families and communities with their intrinsic good – even if their arrival was unexpected.

The Ds community is a pretty tight one, and we can be pretty brutally honest with each other when the need arises. We share our frustrations and fears for our kids’ present and future; but I can’t point to any family that could imagine life without their kid – Ds or otherwise. Mine certainly can’t. And all you have to do is take a cursory look at Facebook today and there’s a friend sharing a link with a testimony on the unexpected blessing a kid with Ds has on families all over the world.

I guess I’ve said enough about the brutality at home and abroad – and I’m even willing to entertain the possibility that the aggregate lot of people with Ds is on a slow upswing. But my argument is this: Whether we want to admit it or not, the world is still pretty hostile to our friends – and folks with a whole crap ton of other disabilities as well – and it’s in the name of efficiency (they aren’t fast enough), consumerism (they don’t spend enough) and selfishness (they aren’t “part of the plan”).

So okay – now for a little dash of hope:

Let me hasten to add, here, that I can never remember a time in my daughter’s life that I know of her being overtly disdained or excluded. God has blessed us with a marvelous community that treats Julia like a little rock star. But a day is coming when the heartbreak will happen. I don’t know if it will come from honest neglect or thoughtlessness, or worse, from boorish and mean spirited insensitivity; but I do know that whoever it is, they will see Julia not as a person, but a problem. She’ll be a stranger to them.

That’s the real difference. Our community has surrounded and accepted my daughter. They are interested in her life, they know her and have told the world, “She belongs to us.” She has become important enough for people to turn aside and take time to walk with her through life. And that’s where we have a shot at really making a difference.

There are a couple of challenges I want to humbly offer you:

First of all, Get Informed. Take a moment and check out some of the facts about Ds. Most of the statistics I got for this little tirade, I found right here. There’s some sad stuff, but a whole lot of really hopeful stuff as well – just like anyone else’s life.

But more importantly, Make a Friend. The reality is, you can never be a part of the oppression of people you really know, but it’s estimated that only 38% of the U.S. population knows someone with Down syndrome. So take the time to turn aside and really be blessed by one (or more) of these truly amazing people.

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In the end, it’s about the adding more voices to the human conversation. Folks with Ds may not be articulate by conventional standards; but make no mistake – by their very presence, they will speak love into a world that needs it so badly. It is a far more beautiful life because they are in it.

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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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