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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Intrinsic Good

On March 20, 2012, in Commentary, Julia's Journey, Life, Personal, 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, 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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Autumn in the Midwest and Elsewhere

On November 18, 2011, in Julia's Journey, Life, Personal, by Chris

Hey – been quite a while. For those of you who have been following our story, I want to apologize. After a year of pounding out these posts in reasonably quick succession, I’ve found myself in kind of a winter of my motivation. I came back from India and honestly wanted to spend some time with my family that was as undistracted as possible. Anyone who knows me knows that’s quite a trick, considering how many things I like diving into.

Blogs – especially if they’re done well – take a lot of discipline to maintain and create an itch similar to when the lawn goes un-mowed for a couple of weeks. You look out the window and there it is, and there’s a tipping point of motivation that comes into play: “Should I get out the lawn mower and get it done or does the couch and the remote look more enticing?” I could wind this metaphor out even further and talk about the neighbors complaining, but you get the idea. (And thanks to my brother-in-law Jonathan for the image!)

So now I’m hanging out at Costco getting some new tires for the Camry, and I thought I’d get you up to speed on the goings on over the last month.

Being away from the family in India for ten days wasn’t as gut-wrenching as I thought it was going to be. There were certainly pangs of it when I sat and thought for too long, but the pace of activity and the crush of the in-country experience thankfully kept my mind off of it. Most of my time was spent behind a camera telling the story of CEM. I came home with 2400+ images and my perspective realigned for a while. I’ll have more about that later.

Not long after my return, we took advantage of a trade show that Jocelyn was attending to visit her brother and his family in Fort Worth. It had been almost a year since we had seen Jonathan and Deirdre last Thanksgiving and their son Oliver has grown up! Julia was really excited to meet him and he showed amazing patience with her even though he is not even a year her senior.

We also had time for breakfast with the Gilmartins, our dear friends transplanted from Detroit. And in Grapevine, Texas, we visited the Torian Cottage, a log cabin bought by one of Jocelyn’s ancestors back in the mid-nineteenth century and occupied by the family until just after the Second World War.

Oh, yeah – and we celebrated Halloween in Texas as well! Miss Julia was styling in her University of Michigan cheerleader outfit at her cousin’s costume birthday party (okay all you Ohio peeps – no hatin’! We are equal opportunity – send us some OSU stuff and we’ll put it on her). She then tore up the trick or treat circuit on the mean streets of Fort Worth in a pink skeleton outfit courtesy of Old Navy – accessories and hair by Mommy.

The family visits didn’t end after we got back. The following weekend, we visited with my sister, Lisa, who was spending some time out at the farm. While we were there, we did a quick photo shoot of Julia for our Christmas card. No previews until after we send them out!

We also met some new friends last week. Babycenter.com was a real godsend to Jocelyn as she was processing and preparing for Julia’s birth and all through the challenges of the months before the surgery. As much as she gained from the deep base of knowledge on the site (there are forums literally for every issued out there from Down Syndrome to the best ideas on effective potty training), Jocelyn is starting to give back with the experience she has gained. Jennifer is a local found us through Jocelyn’s avid activity on Babycenter and read the blog to hear more about our story. She and her husband, Dave, are the parents of twins – one of which has Down Syndrome.

It wasn’t too long before we set a date for the zoo. Truth be told, our hearts have knitted together in a surprisingly short time and I think we may have some lifelong friends!

You’ll be hearing more stories very soon, but we’re going on the road again tomorrow. We’re going out to the farm, transferring all of our baby crap into my Dad’s big “grandpa cruiser” and shooting down to Washington D.C. to spend a long holiday weekend with my sister and her family.

Good to be back!

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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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