Six Months

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

It’s 6:22pm as I write this; and six months ago at this moment, I was only minutes away from witnessing the birth of my daughter. That was six months. And two weeks in the NICU. And some sleepless nights as we awaited surgery. And ten days at Children’s Hospital. Ago.


Things are a little different now. We got a six month old little girl!

The day came and went quietly. I almost had to remind myself, the day was so normal. We woke up, we ate, went to church, had lunch, went shopping for some new walking shoes for Jocelyn. I took in a disappointing loss by U of M to Duke in the NCAA Men’s Basketball Tournament.

Normal… I’m still taking it in.

So I couldn’t let the day go by without celebrating the one hundred eighty-two days that our daughter has drawn breath. Thanks.

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God is So Faithful…

On March 13, 2011, in Life, Personal, by Chris

I’ve taken some time off recently to settle back into life after all of the drama that’s happened in the past… six months or year, depending on where you set the story’s beginning. I gotta tell you, being the dad of a (now) reasonably typical kid like Julia is great. And having come through the scariness like we have with all of the support and love of so many, it’s often hard to just sit and take in all of life’s sweetness.

We got clearance from Julia’s cardiologist to go live a normal life and check in once and a while just to make sure all is well. So after a little time to get our bearings, we brought her out into our world to meet the dozens of people who had been praying for her for months. Our first Sunday at church as a family was met with so many smiles and I lost track of how many times we stopped on our way from the parking lot to the auditorium to talk with someone who had been following her story. People would step forward with a smile and we would tell them how we felt like were coming out from a cave and blinking our tiny pink eyes in the bright sun. Julia was well after a long winter of uncertainty; and she was certainly the “belle of the ball” that day.

One conversation after another; and nearly every time we would hear, “God is so faithful.” It was hard not to agree with them.

A similar reception awaited us when we took Julia on her first road trip to visit Jocelyn’s tribe in Dayton last weekend. There were so many who hadn’t met her in person yet (though her aunt Jen was a godsend through the first dark days at Children’s Hospital) that her adopted Gramma D had an open house for anyone who had followed Julia’s story to come and meet her and celebrate the victory.

Dozens came – some of them people we had never met who had heard of this extraordinary little girl through a friend. All of them, often through tears, marveled in one way or another: “God is so faithful.”

Julia even got top billing in the sermon at Jocelyn’s home church that Sunday. They had prayed for her the day before her surgery, so it was a wonderful moment in the service when the lead pastor of the church paused to recognize, celebrate, and later teach on the faithfulness of God – even in the worst circumstances. Before and after the service, the community that Jocelyn grew up in was there to celebrate with and encourage us after a very challenging season.

And the refrain was the same as they looked into Julia’s wide eyes: “God is so faithful.”

It was before the service, as I watched Jocelyn get her eleventh hug and kiss from a well-wisher, that my focus shifted across the room to a family who pushed a young man in a wheelchair to a spot toward the back of the crowd. Mitchell was in his early twenties and one of the more profound cases of cerebral palsy that I had seen. It was clear that he required round the clock care; and his mom, Carrie, had a look of careworn determination that I had become more acquainted with among the other parents on the PICU floor at Children’s Hospital. That kinship between us was further cemented as she came up after the service, knowing of Julia’s Down Syndrome, kissed her on the head and whispered a silent prayer into her ear.

As I sat through the service, there was a thought bothering me that I couldn’t quite pin down but wouldn’t go away. It was a kind of mental itch that took a while to come to a place that I could put words to it. And here it is:

For weeks, we had celebrated with our community God’s faithfulness in seeing us through Julia’s premature birth, two weeks in neonatal intensive care, homecoming, testing, preparation, surgery and convalescence. We asked for prayers as we waited the agonizing weeks before the surgery that her heart and lungs could bear the strain. We asked for prayers as she endured eight hours of surgery and weeks of recovery. And God was faithful through it all. Julia’s heart is repaired and we are looking forward to a long life with our girl. Truly a miracle – both of medical science and the power of prayer.

But as I looked as Mitchell and his family, I had to ask. Is God still faithful when we don’t get the outcome we desire?

I don’t know them well at all, but I’m sure that Carrie asked for prayers from her community as the diagnoses came in. And I’m sure that her community was determined and faithful in their prayer. But where was God with Mitchell’s miracle?

I’ve spent a lot of time over the last couple of days watching the devastation in Japan and the still hovering spectre of the possible meltdown of two nuclear reactors. I’ve been asking the same question you have: Where was God when the earth shook and the tsunami came in? Is God still faithful, even in the terminal diagnosis or at the end of an addict’s needle?

I sat there in that church service, worshiping a God that can seem, at first glance, awfully arbitrary in his distribution of blessings. One lives, another dies. One survives unscathed, another is profoundly wounded. I fought survivor’s guilt as I watched Mitchell and his family. We’ll have our moments of disappointment, no doubt; but Jocelyn and I still nurture the dream that Julia may one day live independently. Carrie will never know the empty nest, unless a time comes when Mitchell’s care just becomes to difficult.

It wasn’t until after the service that I had a chance to really meet Mitchell and his family. I saw a knowing in his eyes despite the disability. I had the good fortune to hear his mom’s story as well. Carrie is a woman of deep faith and has found joy and fulfillment in caring for Mitchell, and said that he is the glue that holds the family together. She says she thinks God knew she wouldn’t bear the empty nest well, and gave Mitchell to her as the remedy.

I had heard that from other families of people with special needs; but my still limited experience had never really seen it lived out until I met Mitchell’s brother. Levi, a lantern jawed young man of eighteen who looked like he could laugh his way through Navy SEAL physical training, came up to his older brother as I was speaking with Carrie. He wrapped his arms around Mitchell, kissed him on the cheek and whispered words of affection as he looked him in the eyes. Mitchell’s face broke into a grin that I could only describe as utter satisfaction. And I wondered at that moment who the truly blessed are in this world.

Where is God in the earthquakes and tsunamis? People much smarter than I have been pondering those questions for centuries. I may take a whack at that larger question sooner or later. But it took the love between two brothers for me to have a little clarity amid the confusion.

I humbly submit that part of the answer is this: God is faithful in the pain of this world when people are faithful. It is our response to the disaster – be it personal or national – that will be the true test of whether Ultimate Good will prevail. And responding well, even when the times are dark, requires a fortitude quite alien to us. When we choose to give – even when it’s inconvenient, uncomfortable, or even dangerous – we join that stream of Love that is always working to redeem and beautify the brokenness of the world.

Yep – God is faithful. To the very end.

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On March 2, 2011, in Commentary, Personal, by Chris

I’ve been struggling lately with a question in my head about the ultimate direction I want to take this blog. Certainly, Julia has been my inspiration for a lot (most?) of my writing over the last six months; and I’m loving how so many have been rooting for her as she went through her surgery. But the drama is honestly starting to dry up and we’re dealing with a pretty typical kid. Even with the uncertainties of how her Down Syndrome is going to unfold, there’s going to be a whole lotta nothing in terms of extraordinary news.

So here’s the tension I’m living in: Does my writing start branching off into other, riskier subjects or stay in the comfort of chronicling Julia’s progress as she continues to grow? I hope this blog can contain both, and I invite you to drop a comment and give me your perspective on the other issues that weigh on my brain. I’m setting a goal for myself to have something new on here in the next week or so.

But in the meantime, Julia started exploring solid food last night; and I know several who were dying to see the pics. So here they are. We began her culinary adventures with peas as directed by her pediatrician (contrary to the rice cereal that seems the norm). She said to begin with vegetables and fruit and then branch out from there, so we started with something on the less yucky side of vegetables. Turns out she loved them!

Like I said, you’ll be seeing something non-baby related very soon. I hope to see you back!

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A Milestone Revisited

On February 27, 2011, in Julia's Journey, Personal, by Chris

Tonight was momentous – and not because of the Oscars! For a couple of weeks before the surgery, Julia had been rolling over when we got her on the floor for “tummy time”. On January 16th as we were packing up to go down to Children’s Hospital, she actually rolled from her back to her belly. It was a mix of elation and wistfulness as we watched, knowing it would be a long, long time before we would see her do that again. Open heart surgery has a way of delaying things.

We had to wait thirty-seven days, but we set Julia on the floor this evening and she rolled over as if she was picking up right where she left off. She was a little taken aback with Jocelyn and my shouts of celebration, but she seemed to take it in stride. I’m hoping that you’ll celebrate with us!

UPDATE: I just got a text from Jocelyn that Julia tipped the pediatrician’s scales at eleven pounds this morning! One more thing to celebrate!

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Nothing to See Here…

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

And the news is… not much!

And that’s part of the reason (well, that and my computer’s hard disk crash) that you’ve not heard from me lately. It’s become… spookily… normal. Dr. Weinhouse checked Julia out last week, adjusted medicine dosages downward and doesn’t want to see her for a month. Her weight has sailed past nine and a half pounds and is expected to hit double digits in the next week or so – if she hasn’t hit it already.

Julia’s feedings have become uneventful (remember when I prayed for that? We’re there!). She hates taking naps during the day and it makes her a real pistol in the evening before we put her down for the night (thankfully, she’s a great overnight sleeper!). She is already doing doctoral research in creative diaper filling; finding new, innovative ways to get around the diaper and mess up her outfit.

It’s a strange thing coming to terms with the reality that you don’t have what feels like a sword dangling over your head anymore – that there’s more to the world than your child’s (now repaired) heart. Jocelyn and I are less obsessive about her feeding volumes and have moved on to talking about how we’re going to get her on a schedule so we can smooth Jocelyn’s transition back to work. And there is also a realization of the vast energy that Julia’s heart condition required of us. Fortunately, there are plenty of other things to pour that new energy into. We may even get back a few of those sleepless nights… in 2035.

Truth be told, we have joined the ranks of the rest of the new parents out there with dreams and desires for their kid’s future. Julia’s Down Syndrome is still out there and its aggregate effect on her is yet to be revealed; but our conviction has remained unshaken that despite it all, our little girl is going to have an incredible impact for good on the world. We will do our level best to give her every opportunity we can, and then let Julia define herself.

Meanwhile, with the dearth of news regarding Julia’s heart condition, I’m going to have to find some new things to write about. Stay tuned!

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