Heart Day’s Eve

On January 16, 2012, in Commentary, Julia's Journey, Life, Personal, 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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Christmas Greetings from the Farm

On December 24, 2011, in Life, Personal, by Chris

It’s Christmas Eve at the farm on Willow Road. Another crystal clear and cold night and we are all nestled around the fire after a day of visits with family and friends, two great meals (masterfully prepared by Jocelyn) and an evening service at St. Paul Church. My dad is starting to nod his head in fatigue as he finishes out his night’s reading, and I’m occasionally looking up with some amusement as Jocelyn discovers the joy and frustration of assembling an educational toy for our daughter. The education, apparently, is mostly for the parent and comes from just getting the product out of its packaging.

It’s been a great retreat so far from the pace and noise of the city. I’m always struck by the comparative silence that greets us when we arrive. The days here are quieter – especially in winter when most of the farm implements have been stowed for the season. But the nights are exquisitely so, the silence broken only by the occasional bay of a barking dog off in the distance. I’ll always try to talk Jocelyn into cracking open a bedroom window on the off chance that we hear the chilling cries of the coyotes that have made their way back into the township over the past few years.

I’ve come into this writing with two thoughts in my head. The first is how important it is to remember. I will forever look back on this Christmas as the holiday when I remembered how to breathe. A year ago, right around this time, we were weeks away from Julia’s open-heart surgery. If you’ve followed the story for that long, I had a countdown clock set for the minute we were to report to the surgical staff at Children’s Hospital. We were recording Julia’s food intake down to the milliliter and guarding against any possible infection for fear of its potentially devastating effect on her health. It was a major undertaking (and not a small risk) to even come out to the farm for a few days.

Now, as the ache in my back eases after standing at the back of the church holding a wiggly toddler for an hour, I am struck by how… normal… it all feels – and how long, long ago that whole ordeal seems. I get far more agitated at the fact that Julia is misbehaving in church than I can ever remember during her recovery from surgery. I guess that’s the mercy and the curse. It would be so easy to simply forget what we had gone through and the sustenance we received from God through so many. So tonight, I am going to remember – and say, “Thank you.”

I’ve also been reminded in the last week or so by how something beautiful and lasting and redeeming can come in such small packages and under the most adverse conditions. I am still amazed at God’s willingness to take us through a tomb of horrors in order to give us the “street cred” we need to speak into the lives of others and bring a level of encouragement that we couldn’t have before. Even more amazing is the posture we have when we are doing it well – not overbearing, but offered with the quiet humility of one whose self-image doesn’t rise or fall on the person taking the advice.

Jocelyn and I have had so many opportunities over the last year to encourage other families going through what we did. And it’s been awe inspiring to see their countenance change over the months from one of fear and uncertainty to the quiet knowing of a parent who has gone to the wall for their kid.

I’ve been reading the entire Bible over the last year with some friends and recently came upon a verse in an often-overlooked book of Hebrew scripture:

“But you, Bethlehem Ephrathah, though you are small among the clans of Judah, out of you will come for me one who will be ruler over Israel, whose origins are from of old, from ancient times.” ~ Micah 5:2

Some seven centuries before its realization, a promise was made that a backwater town (in the shadow of the capital of the religious establishment) was going to be the cradle of a new movement. It would start with a child born under circumstances that some would deem rustic and even scandalous, but its message of a love that was (and is) as overpowering as it is humble would silently weave its way through the ages.

Political and religious powers would try to appropriate its message for selfish gain, and would seem to succeed for a time. To their eventual frustration, though, Love has a life of its own and quietly demands to be met on its own terms: gratitude, selflessness, and service. The swords that people would take up to defend it are useless. The organizations raised to promote it will eventually crumble to dust. But Love will remain, beginning again in a willing heart that simply chooses it. And out of the smallest of packages, beauty continuously unfolds.

It is that Love we celebrate tonight. It is that Love that will not let me forget – even when the crush of life’s demands push in even harder. My prayer for you is that you bind yourself ever closer to the God of that love and let Him push back on the expectations laid before you; and for this time find the rest and comfort that Love so generously provides.

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

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Goodbye, Bill

On December 18, 2011, in Life, Personal, by Chris

I didn’t want to go too long before I paused to remember the passing of one of the last of the old farmers. Ever since our family made its home on sixty acres in Saline Township, Bill’s family was a part of the fabric of the community. His great grandfather settled there around 1870 and the family has been there ever since.

Bill ran the farm on his own after his parents died, eschewing the large scale, specialized farming methods and continuing to keep a few pigs, a few sheep, an orchard known throughout the county and a marvelous herd of Holstein dairy cows all descended from the single cow that his grandfather acquired in 1922. Apparently, her name was “Corny”. Seriously.

But that’s not what I really remember of Bill. He was truly a man born of a different and gentler age – and one of the finest 4H leaders I’ve ever known. Other than my father, he is the one man most responsible for getting me through nine years of show cattle projects that ultimately paid for three years of college. As one of the elder statesmen of Washtenaw County agriculture, He also took a ragtag team of teenage boys to the state livestock judging finals. We didn’t get into the top five, but it was his tough but fair coaching that got us there in the first place.

He was one of easy nature and temperament – I only remember him losing his temper once, (for which he immediately apologized). His patience for kids, as I look back, was truly saintly. Although he remained a bachelor his entire life and had no children of his own, Bill has adopted kids all over the world through his tireless efforts introducing so many to the unexpected beauty of agriculture.

It took no patience on my part to hear his stories – from his time with a German family while he was in the Army to the inner workings of relationships from generations back to controlling fire blight on the young apple seedlings. Bill was the consummate yarn spinner who would regale me with tales as we drove the back roads of Washtenaw County on our way to the next judging practice.

But mostly I remember him as one of the hardest working men in that same county. For as long as I can remember, he worked that farm – alone – with the care of his whole heart. He never took a vacation (dairy farms are a tough mistress that way), but in the forty years I knew him, I never heard one complaint. And the barnyard was neater than many fully staffed farms twice the size.

He chose a quiet life of communion with the land, teaching others the ageless value of responsibility, reliability and simply keeping promises. His death was sudden and, at the age of 71, far too soon.

And I’m going to miss him.

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Wheels Up for India

On October 6, 2011, in Life, Personal, by Chris

Today is the day I’ve been anticipating (and dreading) for months now. Jocelyn and I prayed and talked together in February after Julia got out of the hospital, and we agreed that I needed to think about re-connecting with our friends in India.

Back in early 2002, I was in the middle of my transition out of the auto industry when a friend invited me to go to India with him and meet Jaya Sankar, who was doing an awful lot of good in his community. He already had nearly a hundred kids that he had taken off the street and was working with my church to purchase a property for a more permanent campus. He has since expanded into dozens of initiatives and I’ve been going back pretty regularly ever since. I count Jaya and his staff among some of the best friends I have in the world.

Jocelyn went with me back in 2009 and caught the same vision. Even now, she’s packing several dozen of her famous cookies for me to take.

She and Julia are staying behind. That’s the dread part.

The farthest I’ve ever from my daughter in her young life has been a couple of miles when she was in the NICU right after she was born. Jocelyn has traveled briefly for a trade show, but Julia and I have always been together (even though she’s kinda biasing toward momma these days). A buddy of mine who just came back from a trip to Israel said that there is no way around it. Being away from your family is very, very hard. Great.

But here’s my hope: the last year has so completely altered my outlook that I can’t help but believe that I’m going to look at India through a new set of eyes. And anyone can benefit from a different perspective now and then.

There are some things you can do to help:

Pray for us! This is my first time being away from my girls after a very intense year and Jocelyn is going to be a single mom for a while; so we would love your prayers. You can also watch the team’s progress on our team blog and get some of my more personal thoughts right here.

Give to a good cause! Jocelyn is putting a team together to give back to a community that has done so much for us. Step Up for Down Syndrome, benefiting the Down Syndrome Guild of Southeastern Michigan, is happening this weekend and there’s still time to be on the team. Click here to donate or to join the team!

Well – here it is. I’m closing up my bags and making final preparations. We’re headed for the airport at 12:30. By the way, can you take really cute babies in your carry-on luggage?

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Bring It + 365

On September 12, 2011, in Commentary, Life, Personal, by Chris

It was a warm Sunday afternoon a year ago that I settled into the comfortable chair in my daughter’s as yet unoccupied nursery to begin the adventure in words and pictures that you see before you.

After recounting the challenges we had seen in the months before and those in the future that seemed to be lining up against us, I began this blog with a simple, scary request of God:

Bring it.

That request was not made lightly or flippantly – but it wasn’t without more than a little trepidation. In fact, it was nearly an act of desperation as Jocelyn and I clung to the possibility that amid the cloud of Julia’s frightening diagnoses of Down Syndrome and heart defect, God was there with us. If he wasn’t, we were going to be in deep, deep weeds.

I hesitate to use such a trite metaphor, but the only way I can describe the last year is that it was a roller coaster. But I will add that it was a roller coaster after your fifth corn dog.

So where are we now? Well, the fact is that I’m writing this at the end of the day with my wife crashed beside me after the bottles have been washed and sterilized and the baby’s in bed. Julia’s had a few fitful nights (teething, we think) and we are all feeling the ache of fatigue that comes from a couple hours less sleep.

But if you’ve been following this little narrative, you’ll know that Julia got through the surgery successfully and the scar on her chest is fading even as the memories of the long days at the hospital fade a bit from our minds.

Honestly, a year after “Bring it” finds me wrestling with a lot of the same questions as before, although their shape and texture have become a touch more conventional as I settle more comfortably into being the dad of a delightful little girl with a mended heart and a tad extra on Chromosome 21. What kind of cruelty will Julia face from others because of her condition? How will she live once we are gone and she is on her own?

A lot of the time, I can push those uncomfortable questions down with a household project or the hum of activity in the office, but it came to the forefront of my mind last Sunday at church as we commemorated the somber tenth anniversary of the September 11 attacks. Since that ugly day, our pastor observed, we as a country have become consumed with security in a very dangerous world. And it was in the middle of the message I got that horrible feeling that I’m really no different.

I am wondering if the crush of the last year has caused me to hang on just a little more tightly to my life, my family and my stuff.

There it is. It’s true that adversity can draw you close to God. But the pernicious flip side is that it can just as easily make you run in the opposite direction. Even when I’ve experienced the Life that is God, I still often find myself clinging dumbly to things that will eventually end up in a landfill, expecting them to give me life.

I hear him asking me, “You’ve trusted me with your life. Will you trust me with Julia’s?” I’m ashamed to tell you that far too often, if I were really honest, the answer would be no.

But here is where I have to go back and do the gut check. Do I still believe that God’s dream for Julia is better than anything I could ever conceive of? And if my faith says that God spoke the universe entire into being, who is more equipped to unlock the best from her (and from me, for that matter)?

Yeah, this “Bring it” thing is hard, hard work sometimes. But all I have to do is listen to the satisfied coos of my daughter and watch my wife as she sleeps beside me, exhausted from the day (“But a good tired,” she says). These are the little reminders that something deeper and more wonderful awaits those who press into life’s occassional discomfort and abandon themselves to the adventure that God has for them.

Here’s to another year.

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