An Unexpected Trap

On August 7, 2011, in Julia's Journey, Life, Personal, by Chris

It fell just a tiny bit more into place just the other day. The reality of what is before us came a little bit more into focus. It started innocently enough – I was picking up Julia from daycare. 4:30pm is the time when all of the parents converge and the room is always a bustle of activity as the day comes to a close.

One of her playmates (I’ll call her Emma) was born just a week or two after Julia. It’s so cute to see them interact the way they do – sitting on the floor and looking at each other in wonder, sharing a toy or a book under the watchful eye of Miss Carla or Miss Tia. I don’t know if Emma and Julia will be friends forever, but the daycare workers say they are “BFFs”.

I was loading Julia into her car seat and Emma’s mom came in to pick her up. “Do you want to show Mr. Chris your new trick, Emma?” she asked. It took a little encouragement, but it wasn’t long before Emma popped out of her sitting position and started crawling toward her mom. It was amazing to see and we celebrated Emma’s achievement together. It had been less than a week since she had started and it apparently came almost out of nowhere.

I looked at Julia as she sat grinning and cooing in her car seat and it hit me.

Julia’s not anywhere close to crawling.

She’s getting passed up by kids younger than her.

Her developmental delays are becoming a little more evident.

For all of her progress, Julia still has Down Syndrome and there are realities that have yet to unfold. And there is no way on God’s green earth that we are going to be able to avoid it.

Needless to say, it was a quiet ride home.

But let me pause for just a minute and tell you that I love my kid and she is an absolute delight. This tale ends well, but it takes a minute to get there. Okay – back to the story.

I can get pretty quiet when there’s something churning in my head; and I’ve had to learn to work hard to articulate it before it gets displaced into something else. The household suffers when my pensiveness and sometimes melancholia gets twisted round and expressed in my frustration with something totally unrelated.

I walked into the house with Julia; and as quickly as I could, I choked out what was bothering me. Jocelyn is very intuitive and could tell there was a something going on within minutes, so there’s no way I would have hidden it for long.

“Emma started crawling.” It came out like I was announcing that the car was going to need transmission work.

“I know,” she replied, “I saw her dad in town today and he mentioned it. I thought it was great news since kids with Down Syndrome are visual learners and it will be good for Julia to watch Emma crawling.”

“Yeah. That’s a good way of looking at it.”

One piece of news – two reactions. Glass half empty – glass half full. But what was it that got me in that funk so quickly? Granted, I can have kind of an “Eeyore” outlook sometimes. But if we set that aside for a moment, I’m afraid I got caught up in something that plagues all of us at one time or another.

Bottom line, I got caught in the comparison trap. Their kid is crawling – mine isn’t. Their kid is walking – mine isn’t. Their kid is doing long division and made the traveling team and just discovered a new planet between Uranus and Neptune… You get the picture.

I mourned a little death that afternoon; but it wasn’t a person or a relationship that passed away. It was the expectation I had unconsciously put on Julia that had no business being there in the first place.

Leadership consultant Marcus Buckingham once observed that the greatest joy and the greatest challenge in life is not wanting to be someone else. I say the greatest joy and the greatest challenge in parenting is wanting God’s dreams for your kid and leaving yours at the side of the road – no matter how redeeming you think they are.

It’s true, I celebrated with Emma’s mom at the new development; but for just a moment as I looked down at my precious little girl, I felt the twinge – okay, the stab – of my expectations coming a little more in line with reality. And the reality is that Julia will crawl one day. Just not today.

She will even walk and someday know joy and elation – and feel the sting of betrayal and disappointment that I cannot shield her from as much as I want to. In the end, though, I have to help her to live her life to its fullest potential and not expect her to live mine.

Jocelyn and I said at the outset of this adventure that we need to let God and Julia define Julia. The afternoon surprise of another kid’s milestone was, for me, just another necessary exercise of letting go and loving my little girl right where she is.

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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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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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The Gift of Prayer

On January 13, 2011, in Julia's Journey, Personal, by Chris


Our family got a beautiful gift from some friends today. Apparently, the plan was hatched a few days prior when some of the staff of my church decided to set some time aside to pray for Julia and her surgery (and for her parents to come down off the ceiling).

The debate still rages on as to the ultimate effect of such an exercise; but something amazing happens when people come together to focus their attention on God. To admit, if even for a moment, that a situation is completely out of our hands and recognize that there may be a larger will at work can be a very healthy thing.

I do it all the time (pray for folks, that is), but it is an entirely different feeling when the focus of the prayer gets turned on my family. It truly was humbling to witness my little girl as the focal point of an overt act of love and humility. People turned aside this afternoon, took their focus off of their work and the myriad distractions and concerns of life and asked God to move with love and concern in Julia’s life.

I may never know in this life if the cosmos were affected one bit by the exercise, but I can tell you that we were. Moreover, I can say with (hopefully) humble confidence that God smiled today. Thank you, my friends!

This is also a thank you to the friends all over the world who are praying for our Julia. You’ll be meeting some of them in a post coming very soon.

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