Christmas Greetings from the Farm

On December 24, 2013, in Commentary, Life, 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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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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She Picked Me and She Picked Us

On September 20, 2012, in Life, by Chris

I’m taking a moment to celebrate today, and it’s an easy one to remember. It’s the day that two lives were completely and permanently woven into mine. It’s the day that life would (twice!) never be the same.

Four years ago tonight, I was a new husband. A year prior, I had basically surrendered to the possibility of lifelong bachelorhood, but it seemed that God had other ideas. Jocelyn and I met in December, 2007, and our tribes saw the magic before it became completely clear to us. We exchanged vows nine months later, fulfilling a prediction of one of Jocelyn’s mentors that it would happen before the summer was over. It’s amazing to look back and to see the design in it all – just to say, “thank you.”

Two years ago tonight, I was a new dad, scared spitless as I looked at my daughter under the oxygen tent in the NICU while my wife rested two floors below after a scary, premature birth. The future was so uncertain at that moment as the staff checked her for the myriad complications that can face a child with Down syndrome and we embarked on the months of preparation for the inevitable heart surgery ahead of us.

All I could do was croak out a meek “thank you” to God – at least for that moment – that my girls were safe.

But even in my fear, my soul was enriched by our ever-widening community (with representatives from four continents) praying in solidarity for Julia’s health and Jocelyn’s and my sanity. And many of those friendships still remain even after we got through the surgery in January 2011. (editor’s note – she just met with Dr. Weinhouse yesterday and he described her as “magnificently healthy”)

Moreover, as Julia’s life has unfolded over the last two years, a conviction that I clung to before she was born has slowly come into focus. Even through the frustrations of navigating the endless bureaucracies finding resources to help her reach her fullest potential, it is becoming more and more evident that it was no haphazard pairing and re-pairing of chromosomes that brought us together.

Just as God somehow moved in Jocelyn’s heart to choose this clueless guy to live out the rest of our lives together, I (perhaps foolishly) like to think that Julia somehow chose us. Her bright little spirit was tasked by God to teach Jocelyn and I how to love in a new way.

That learning process has often been a gut-wrenching one, especially now that Julia’s two-year-old willfulness has emerged. But the ancient covenant that is struck between parents and child still remains, and Jocelyn and I pray every day that God strip from us all that could get in the way of his dream for the life he has entrusted to us.

I am so glad for this day and so glad that Jocelyn chose me and Julia chose us.

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Intrinsic Good

On March 20, 2012, in Commentary, Julia's Journey, Life, by Chris

There was a lot to be thankful for today. It’s the first day of Spring after the mildest Winter on record, Detroit had an 80 degree day in March, Julia celebrated her eighteen month birthday and I have the evening off!

For all of those great things, I am thankful. But I’m also finding myself pensive, a little crabby, and a little weepy – simply not knowing what to do with something that’s come to my attention. The only thing I’m sure of is that I cannot remain silent. And the risk for you, dear reader, is that even as I start this post, I’m not quite sure how I’m going to turn it around into something even remotely upbeat.

You might have seen the small seismic “ping” over social media a couple of weeks ago. It spoke of a paper from a mainstream academic journal making a philosophical case for (are you ready?) killing a newborn when its care would be an “unbearable burden” on the family or society as a whole.

I’ll let you sit with that for a minute.

I’ll also tell you that I am shifting in my seat as I write this knowing that, in your incredulity, you read that last paragraph more than once hoping it would come out different. Yep, their proposition would include and perhaps even single out children with special needs for infanticide. It would put yet another set of crosshairs on kids like Julia.

Believe it or not, when I saw the link to that article come up, I did what a lot of us do. I read the link description, scanned through some of the uniformly acidic comments of justified indignation, shook my head and moved on. And I pretty much forgot about it.

But when a friend of mine gave me a printout of the actual article about a week later, I got the horrible feeling that I wasn’t done with this. I couldn’t simply sit in my ignorance on the sidelines anymore. I would have to actually read it and take full responsibility for my revulsion. Even in situations where you know you are going to hate every minute of it, you can’t have any integrity in saying, “I disagree” without being able to say, “I understand.” So I read it. More than once.

Turns out the article was peer reviewed according to standards of the journal that published it. And the sad reality is that its propositions are not all that new or groundbreaking. The concept of infanticide is not a new one; nor is it outdated in its practice in some parts of the world. I already knew that and up to this moment have done very little.

I wanted to do due diligence and really hear more of the dissent and support for the article, so I clicked on the journal editor’s statement in defense of its publication and his indignation over multiple death threats that the paper’s authors had received. I got less than halfway through the comments by people way smarter than I (many of them really articulate) when I got to the heart of the matter – at least for me:

I’m just a dad who is often in way over his head when it comes to actually being a dad. But in my moments of clarity, I see intrinsic, inestimable worth and potential in my little girl.

And it scares me a little bit that some others don’t. It frightens me that there is some faction in the global community that could see their way clear to assign value to one over another because of the perceived burden their life would put on others.

I’ve never talked about this publicly, but reading the article took me back to the moment almost two years ago that a doctor told us about Julia’s heart defect and asked if we even wanted to continue with prenatal testing. As soon as we found out that her life was not going to be typical, there was an overt presupposition on the part of many on the medical team that we would opt our kid out of living the life that God had laid out for her.

And I thank Him. Every day. That we didn’t make that unthinkable choice. Because Julia Paige Cook in her brief time on this planet has helped others know joy.

But at the same time, I cling to the conviction that human life – in all of its inconvenience – is intrinsically and uniquely good. And even as I am repulsed at the propositions put forward by the writers of the article, I simply cannot join the chorus of shrill voices of opposition who have gone as far as to threaten those same writers’ lives in order to quiet their voices.

I have to choose (moment by excruciating moment, sometimes) to live in the tension that if there is room for dialogue, then we should keep talking. Even when the space between our convictions feels so vast, Love demands that we keep striving to find peaceful common ground for as long as possible – and “possible” is way, way longer that we are often comfortable with.

Because Love died for those two writers as well.

But at the same time, we don’t have to simply sit by and let this debate go on in the rarified air of philosophical academia. I (and you, if you’ll join me) have a cool opportunity before us:

One of the preeminent organizations for Down Syndrome, the Down Syndrome Research and Treatment Foundation, has a primary goal of driving research to improve the learning, memory and speech of people with Down Syndrome by fifteen percent. It’s called the plus15 Campaign and it could make all the difference for the long term independence and quality of life for kids like Julia.

Wednesday, March 21st is World Down Syndrome Awareness Day. We could really make a dent in the arguments of the “opposition” if we skipped a lunch this week and gave fifteen bucks to the plus15 Campaign and asked fifteen friends to do the same. And if you do it on Wednesday, the DSRTF has made a 3 to 1 match available to turn your fifteen bucks into sixty! Go ahead and check out their Facebook page as well.

I’ve not often been one to leverage my friends for a cause, but I have way too much skin in the game to let this one go by. And I simply cannot let her small and as yet unformed voice be drowned out.

Thanks for listening.

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Heart Day’s Eve

On January 16, 2012, in Commentary, Julia's Journey, Life, by Chris

I rocked my little girl to sleep tonight.

I know that’s not such a news flash. In fact, it’s pretty routine around our house. Even though all the experts say you shouldn’t let your baby fall asleep in your arms, but lay them down while they’re still awake so they can self soothe and all of that, I indulged myself a little bit, just for tonight.

I also cried like a little girl when I read Julia one of her bedtime stories tonight.

Okay, that’s a little less routine. Jocelyn was out at her book study and Julia and I had a great night playing stack up cups and tossing her rattles around and knocking down blocks and doing our silly little dances together. Then she gave me that “I’ve had enough” look and we settled into a few books before I took her upstairs. And I have to admit that something caught in my throat when I read those words to her:

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.*

*Taken from a great children’s book called On the Night You Were Born by Nancy Tillman. Find out more here.

I have read those lines I don’t know how many times before, but tonight I couldn’t even get through the second stanza before I sat there, thunderstruck and weeping at the realization of what a gift this little girl was in my life. As I tried to compose myself and read through the blur of tears, Julia looked up at me with her wide, innocent eyes, knowing that this was not the usual program.

Okay, I’ll let you in on the mystery behind all the waterworks. Today marks the eve of a very important anniversary in the life of the Cook family and Julia especially. It was a year ago tomorrow that we handed her over to the Cardiovascular Team at Children’s Hospital for an eight hour procedure that made her life a year later even possible.

And it all seems so long ago now…

I took some time this weekend to look back at some of my posts from those seemingly endless days just to jog my memory of what we were facing. The pictures from the surgery day still make me gasp.

But the interesting thing is that we really don’t think about the scary stuff any more. The only reminders we really have is the fading scar on Julia’s chest and a very infrequent consult with her cardiologist.

A year ago, we were gutting it up for eight hours of surgery. Nowadays, we are gutting it up for the war of wills when nap time comes around.

A year ago, we were dosing out four different medicines at several specific times each day. Now we’re doing high fives if we can get a sometimes picky eater to down all of her peas.

It all feels so… normal.

Yes, there’s the morning ritual of her thyroid medicine and the regular (and frequent) adjustment of expectations that come with the territory when you have a kid with Down Syndrome.

But with God’s grace, the prayers of so many and the hand of a skillful surgeon who had the humility to know where his skill came from, our baby’s heart is just fine.

Thanks for celebrating January 17th – Julia’s Heart Day – with us!

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