She Picked Me and She Picked Us

On September 20, 2012, in Life, Personal, 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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A Year (and a Lifetime) Ago

On June 12, 2012, in Julia's Journey, Life, Personal, by Chris

Tonight I was reminded again that sometimes in the crush of the day to day, I need to remember to sit and be grateful every now and again.

It started innocently enough. I was dealing with a typical “first world” problem and rearranging some stuff in our refrigerator so that I could somehow wedge more stuff in. I was in the middle of marveling over how many different mustards we had when my eye was caught by a small brown bottle in one of those shelves in the refrigerator door.

It was the Enalapril – a medicine that we gave Julia after her surgery to protect the delicate work that the surgeon had done on her heart valves. We stopped giving it to her after we got the okay from Dr. Weinhouse last May. That was over a year ago.

But for just a moment, as Jocelyn finished cleaning up from dinner and getting ready to meet a friend for coffee, it all came flooding back.

I sometimes marvel at how seldom I think about those first intense months of Julia’s life when the needs of little girl now sleeping happily upstairs utterly overtook our household. But I marvel all the more at the little touchstones that God puts in my path to remember and say “thank you”.

It took a small brown bottle of long-expired medicine to remind me of the nights of sacrifice common to all new parents, painted over with a thin watercolor tint of uncommon terror as we painstakingly documented every milliliter of fortified milk that she took in. Staying mindful of the 150 kilocalories per kilo of body weight per day target that the docs had set for a healthy weight gain, we celebrated when she was able to fight through the fatigue of a failing heart and take in a whopping sixty milliliters in one feeding. And it often felt like the world was going to end when she spit it up like any normal baby does from time to time.

But we stayed even more mindful of the drugs that kept her comfortable before her surgery and protected her heart after we brought her home. Dosing, timing and praying to God that she wouldn’t hurl it up after we gave it to her. Dr. Weinhouse told us in so many words (and out of his love and concern for us) to chill out a little bit, and toward the end we started to.

But before too much longer, it was done. May 30th, 2011. Julia took what we pray was her last dose of heart medicine for a long, long time.

And as you can tell a year later, she is thriving. Now we have a whole boatload of new challenges: therapies to get her strong and mobile (not much longer!), negotiating with the school’s special education department for services over the summer (no dice) and thinking through the implications of the selection of a new school superintendent. But for all of the challenges, we find ourselves enjoying the present far more, even as we prepare for her future.

But sometimes it’s important to remember what has passed, remember God’s presence in it, and say “thank you”.

Oh yeah, and remember to clean out the fridge a little more often!

Good to be back…

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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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A Year With Julia

On September 20, 2011, in Julia's Journey, Personal, by Chris

At 6:10pm one year ago today, Julia Paige Cook first drew breath on this good earth. For all of you who have been following our story and praying so faithfully, we have a little video postcard of the last year. Please settle back and celebrate with us!

But that’s not all we have to celebrate today. Jocelyn and I are also celebrating our third anniversary. Last year, Jocelyn was on modified bed rest in preparation for Julia’s birth and was a little sad that she hadn’t found my anniversary present yet. Julia decided to come three weeks early and solve the problem for her.

I think God either has a wry sense of timing or not much faith in my ability to keep dates in my head; but it is kind of convenient to only have to remember one date for my daughter’s birthday and my anniversary!

Thanks again for all of your care in the past year – here’s to many more!

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