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 January 18, 2011, in Julia's Journey, Personal, by Chris

Hey everyone! Sorry for the radio silence. Jocelyn, Julia and I got the rest we needed last night and the day is progressing well. But before I get into the details of today, let’s get a little recap of yesterday.

(ed. note – For the uninitiated, some of the pics at the end of this post are pretty tough to look at; but understand that the experienced eyes are saying that she is looking and doing surprisingly well.)

Okay, here we go: At around 5:45am, I tucked my little girl into my overcoat and took the short walk from the International Center where we had stayed the night to the second floor Pre-op suite where we had been told to report. It was certainly chilly, but Julia was in her usual good morning mood and was content to coo and gurgle in the warmth. I tried not to think too much about the day ahead, as there was little to feel but the dread of the marathon day that lay before us.

Interestingly, we got there before the staff did and were directed to one of the waiting areas by a volunteer. It wasn’t long, however, before the whole floor was abuzz with activity. We were brought into one of the pre-op rooms and they took a few vital signs and asked a lot of questions to be sure that her condition hadn’t changed from the consult on Friday.

We changed her into a little hospital gown and the whole time there was an interesting dichotomy: Julia was cool – her parents were a mess.

Then there was the consult with Dr. Walters, the Chief of Cardiovascular Surgery at Children’s Hospital. We’ve only met him once before, and we were again blown away by his concern and expertise. He took some time to answer our questions and also outline the “touchpoints” of the day where he would send word of the major milestones during the procedure. We would get word when the anesthesia lines were in, when the first incision was made and when she was put on and taken off the heart-lung bypass.

I don’t want to overstate his ability, but various staffers later told me that they have come to Children’s to work under him specifically. He is clearly a brilliant man, but had the humility to know where that talent comes from. We took a little time to ask God for a successful day with a minimum of discomfort for our little girl.

Then came the gut-wrenching moment that we were told that we needed to give Julia her kisses and let her go. A good medical staff knows that there is more than one patient in the mix when there is a child involved, so they gave us some time and privacy to get our mess together after I laid Julia in Nurse Colleen’s arms. Like you may have seen on yesterday’s Facebook or Twitter post, it was unquestionably the hardest thing I’ve ever done. And it’s probably not the first time that I’m going to have to, in one way or another, lay my kid’s life into the arms of another. That’s a blog post for another day.

Then came the waiting. And waiting. And waiting. We diverted our attention with the myriad well wishes on Facebook, text and comments on the Blog; and probably gave ourselves whiplash when a hospital staffer would walk on the floor in anticipation of news. The eight hours kind of flew by as I look back on it; but I’m sure it dragged interminably as it was happening. Nurse Colleen would come out with a reassuring smile and give us some morsel of information, and I would dutifully text it out to a distribution list of 20+ people, Twitter and Facebook. I’ve honestly lost count of the places and people who were praying for us, but you’ll be seeing a few of them in an upcoming post as well. And yeah, we all cried together when we got the news that her heart was beating again.

Then Dr. Walters came out and gave us his assessment of the surgery. He was very pleased with the structural repair (you can get my thumbnail sketch of what he did in a video post I did in November). He was a little more watchful of a not uncommon condition where Julia’s heart rhythm had to be helped along with a pacemaker. It typically resolves itself over the next couple of days, but we’d love your prayers that it does.

Not long after that, we were taken for the “drive by smooch” as they took her to the elevator from the surgical suite to the Pediatric Intensive Care Unit (PICU) where she would begin the long recovery process.

We had made it a point to prepare ourselves for what we would see at that moment. We’ve seen the pictures on the blogs and websites of parents who have done some good work to demystify the procedure. I even got a kind message of preparation from the father of the little girl that we had met through Dr. Weinhouse.

But it changes in your heart when it’s your kid. It’s no longer an abstraction. You know at that moment that you have some serious skin in the game.

Okay, gang. It gets a little ugly now. I’ll want you to scroll down a bit…

Believe it or not, what you are seeing is a good outcome of open heart surgery. And as I look at the images again, I have to admit I’m getting a little water in my eyes; because all my untrained eyes can see is a mass of tubes, sensors and wires with my baby in there… somewhere. The staff had to have seen our shell shocked demeanor, because they went to great pains to tell us that she looks great (and somehow managed not to cross the fine line into patronization).

The rest of the story has yet to be written, but the last twenty-four hours have been kind of a blur. Julia has recovered from the surgical anesthesia and has opened her eyes and moved all of her extremities. Neurologically, she’s good. In fact, she’s been moving a little more than the staff would like and they have adjusted her pain medicines to keep her quiet and comfortable. Today is commonly referred to as the “coast” day where they give her a chance to chill out and recover.

She responded to my kisses on her forehead (my goatee is kinda pokey!) and she seems to calm when we sing to her. She’ll give your finger a squeeze and open her eyes when she hears Mom and Dad in the room. The staff has removed the first tube from her called a Left Atrial Pressure Line, which directly monitored the pressures in her heart to make sure that the repairs were holding the way they should. She has also begun feeding via a nasal tube, which is a big win! The sooner we can move her from IV to mamma’s milk, the better!

Here’s the reality: Julia has to tell us and the staff when she’s ready to come home, and she will speak to us in a language that I can’t comprehend. It’s a dialect of blood counts and chemistry, oxygen saturations, pressures, feeding volumes, fluid output, and a dizzying array of numbers and waveforms that takes an army of medical professionals to decipher.

We are assured that she will ultimately be fine, and are glad that more seasoned professionals are at the helm on this. Because in my limited experience it has shown to be as much an art as it is science – the doctors in an intricate dance of fluids and pharmaceuticals with our Julia to ultimately let us bring her home. We are on track for that homecoming, the date of which is yet to be determined, but is in the seven to ten-day range.

I honestly thought that yesterday was a marathon, but I find now that I was mistaken. Yesterday was the sprint. Now we are in the marathon, and it will take stamina and strength that Jocelyn and I have never tapped into. We need your prayer – especially on the day that they remove the breathing tube and will be unable to give Julia a sedative to keep her still. We need your prayers to hear from the doctors when the “dance” takes a different cadence from our expectations and they continuously adjust plans and respond to new outcomes.

God is in this with us and this little family continues to feel his calming presence – especially through your kind prayers and notes of encouragement. We are hanging on and will not come home until our little girl says so.

Thanks again for your care and encouragement!

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We Have A Dream

On January 16, 2011, in Julia's Journey, Personal, by Chris

I suppose I’ll never understand on this side of eternity why one is given a certain burden and another gets something totally different. Fortunately, there are plenty of blessings and encouragements mixed in – if you’re watchful – to take some of the edge off. Nonetheless, no one would have convinced me or Jocelyn five years ago that we would be gutting it up to hand our child over for something so traumatic. Fortunately, no one has had the temerity to tell me that this procedure is routine – that would have illicited a harsh response from me. Routine schmoutine. This is my kid you’re talking about.

The whole thing seems at its face so nonlinear and even arbitrary that at times it makes my head hurt trying to connect the dots. Three years ago, I was just getting to know the woman who would eventually be my wife. Eleven months ago, the prospect of fatherhood jumped above the horizon, with the scary news of Julla’s Down Syndrome and the heart defect coming quickly on its heels. It’s been at turns rewarding and exhilarating and terrifying; and never in my life have I felt so responsible and so helpless at the same time.

But we honestly haven’t had to look very far for the blessings and encouragement. We have been utterly enveloped on all sides with text messages, Facebook posts and e-mails. The encouragement from all over the world has been absolutely humbling. Before we left, our teenage neighbor brought Julia a teddy bear that consoled her years before when she was in the hospital. Even as I write this, Jocelyn’s sister, Jennifer, is heating up a homemade lasagna and providing the extra pair of hands that is absolutely invaluable at times like this.

So on the eve of the day celebrating Martin Luther King, that most marvelous of dreamers, Jocelyn and I are adding a humble little dream of our own. More than anything, we want our daughter to live and thrive and be a small reflection of the love that God has for us and the world. But in order for her to thrive, we have to do the hardest thing a parent can be asked to do: we need to entrust her to God and to the skills of people we barely know. It’s a little earlier in the game than most parents have to deal with, but in our moments of clarity, we know that it’s ultimately a good thing.

It is our deepest conviction that this little girl is going to make a massive impact on the world for Love. We don’t yet know the shape of that impact; but as we weave our prayers with the hundreds of others that are being lifted up for our Julia, we anticipate only good things – even when they come in improbable and often uncomfortable packages.

I’m not sure how often I will be posting over the next few days, but keep an eye on the righthand side of the blog for the latest updates. You can also follow me on my Twitter feed. I’ll be shooting text messages to it regularly.

On behalf of the entire Cook family (all three of us!), please accept my most heartfelt thanks for your prayers and concern.

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Let me just admit at the outset that this post isn’t going to turn out like anything I had planned. Most of you who have been following this story know Dr. Weinhouse and what a caring, marvelous man he is. (ed. note: for those of you who haven’t had the pleasure, you can get caught up here and here.) All I was going to do was share his kind words of intercession and call it a night. Apparently Julia and God had other ideas.

First, the pragmatics: Julia is continuing to feed astonishingly well – so much so that she’s starting to get a little cranky when we aren’t there with the warmed bottle in hand and a burp cloth draped over our arm. Even this evening, Jocelyn was upstairs and I was consoling our ravenous little girl, even though there should have been at least thirty minutes before we would have expected her to be hungry.

So there I sat with a howling Julia on my knee trying to figure out if it was her hiccups or actual hunger that was the source of her ire. You get pretty inventive after a while trying to find ways of distracting a fussy child. Start with one position, shift to another. Jiggle her on your knees, then change to the football hold or throw in a light stroke under the chin. In moments of desperation, I’ve even gotten up and swayed with her (a sight that only my wife will ever witness – it’s not pretty).

Her diatribe was at a peak when, in a moment of inspiration, I slipped a finger between the buttons of her sleeper and traced the line of her breastbone. Her perfect… scarless… breastbone. Ugh. Blindsided by feelings that I don’t want to deal with right now. Push it down. Push it down…

I got up and fixed her a bottle – partially to distract my thoughts of fear and anticipation, but mostly because the hiccups had subsided and a process of elimination concluded that she was hungry. Julia continued to find new expression for her fussiness, but her frustration ended completely when I was finally able to sit and let her feed.

And as I looked upon that satisfied, angelic face, the ache of a father’s uncertainty came back.

This isn’t fair. No child deserves to have her chest cracked open…

but thank God that they can fix the ailing heart it contains.

How can this little mind process the trauma that is going to be visited upon her?

Will she come out of this with her innocence intact?

I took it all in and breathed it all out with a watery-eyed prayer of desperation. Lord, please help us.

I offer you this prayer of a heart doctor with a big, big heart. And whether you believe that we are knitted together intentionally or are simply a random collection of very well-ordered organic molecules, I ask that you be in agreement with the spirit of his prayer…

Elliot’s words are our words…

Anna Adonai, Hoshiana – Dear God, help us

No truer, more heartfelt words have been uttered in this whole adventure. I pray it as I consider the unknown of the next couple of weeks. I pray it as I run out of ways to distract a fussy infant. I pray it as I move through my day, trying to stay coherent on four hours’ sleep.

Anna Adonai, Hoshiana – Dear God, help us

Jocelyn and I would love for you to join us in that prayer over the next couple of weeks. There will be more news forthcoming on what can be expected and how I’m going to be modifying the website so that you can get real-time updates during the days of surgery and hospitalization. But none of that matters but for the providence and power of the Infinite Love who is mindful of us even when it doesn’t feel like it. None of that matters but for the love and support we have felt from you.

Thanks again.

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On December 30, 2010, in Julia's Journey, Personal, by Chris

Yesterday, we met with Dr. Weinhouse, Julia’s cardiologist for a longer-than-normal consult. She continues to do very well and gained another four ounces. But we are shifting from maintenance mode to preparation for the surgery, which is less than three weeks away now. We did another echocardiogram and EKG so that the surgical team at Children’s Hospital could have the very latest information. Julia was good natured through all of it until the last blood pressure, where she decided she had had enough and was ready for second breakfast!

I can feel our efforts beginning to focus as the surgery date nears. We are a little more careful with her exposure to germs since any illness could delay the procedure and Jocelyn and I are ready to get this done. We are pulling ahead her four month vaccinations to give her that much more protection in the hospital. But we are still amazed at how well Julia is eating and responding. By now, a lot of kids with this condition start showing a blue tinge in their hands and feet and often have to go on a gastric tube to get the nutrients they need because they just don’t have the stamina to feed anymore.

The images I saw in the echocardiogram of a 1.6 centimeter hole in her heart just doesn’t match the vibrant little girl I see in front of me. We really do believe that God – and your continued prayers – are sustaining Julia far beyond what the structure of her heart can do. There will be more “mini-updates” in the days to come; but on behalf of this little family that is encouraged and blessed by you, thanks so much for your concern and stay tuned as we count down to the day we can take our healthy girl home!

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