Fulfilled…

On December 5, 2012, in Julia's Journey, Life, Personal, by Chris

The past few weeks have seen the fulfillment of a longtime dream for Jocelyn and I. You may remember over a year ago as I was thinking through the emotion of watching Julia’s Down syndrome becoming a little more evident and younger kids passing her by developmentally.

Well… it’s been over a year and a lot of work. I’ve watched Jocelyn settle expertly into her role as the mom of a kid with special needs, patiently working with Julia on strength and flexibility, gross motor skills and fine motor skills, and constantly keeping an ongoing conversation going to help keep Julia’s communication development on track.

There have been innumerable moments of joy and excruciatingly slow progress at times; but with the perspective of time, the progress has been most definitely there. We really do love the surprises that we often get when we realize Julia is using a sign to communicate what she wants and the wall of confusion and frustration between us crumbles just a bit more, or we see her determination as she works out a problem or becomes increasingly comfortable with her balance.

We also saw tantalizing moments of hope as we would watch her get up into a crawling position, only for her legs to sprawl out from under her for lack of strength. Hope began to build in the last few months as she made a few tentative motions – a hand, then another, a knee – as the movement became more and more organized. There were endless practice sessions as we did our best not to rush her, but to always encourage.

And then over the Thanksgiving holiday, it was as if a switch had been flipped.

One year, three months and sixteen days from the moment I felt that twinge of jealousy over another child crawling, our little girl crawled across the room.

Take a look:

I’ve said more than once that this whole adventure is on God’s and Julia’s timing, but this little milestone has been especially sweet. Thanks for sharing it with us.

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Pumpkin Fun

On October 28, 2012, in Life, Personal, by Chris

Just so I’m not all serious all the time on this blog, I wanted to share the fun we had last Sunday looking for a pumpkin. Julia had a blast messing with these massive orange things in the dirt!

I love watching the wonder unfold in her eyes now that she’s well along the way as far as interacting with her environment. When we visited family down in Ft. Worth last year, we took some time out in a pumpkin patch and she wasn’t nearly as interested.

We have a marvelous holiday season ahead of us and it’s always fun to begin it with Halloween. Julia will be dressed up as a flower this year, and I shudder to think of the next few years when she realizes she can get free candy from everyone in the neighborhood!

She finally started trying to play “ball” with it, but had a little more difficulty than usual…

But finally got it to roll… well, fall over!

I guess perseverance still counts for something!

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A Traveler’s Diary: First Day in Country

On September 29, 2012, in Commentary, Life, Personal, by Chris

I started this post this morning sitting at a coffee bar at Rajiv Gandhi International Airport in Hyderabad, India, waiting with the team for the last leg of our travel to see our friend Jaya and all of the good things he is doing. The thirty hours of travel thus far are taking their toll, so I apologize in advance if my writing is a little incoherent. I rarely sleep well on planes.

The heat of the morning is already beginning to stir the hazy air, distorting the tail flashings of the planes sitting on the tarmac in the distance. All around me the terminal is abuzz with activity – janitors, wait staff, travelers, baggage handlers. But amid the din I still noticed workers stealing away for just a moment to catch up on the news or sit in the shade of a jetway to have a snack with friends as the stink of aviation fuel hangs pungent in the air.

I’ve been coming to India for over ten years now, and I am still struck at the triple espresso shot of concentrated humanity that I get when I arrive. So many people. So many lives. So many wills at work that it amazes me that the culture hasn’t reached a point of collective insanity. Perhaps it has, but the haze of sleep deprivation while I’m in country dulls my senses just enough to let it remain just out of apprehension.

But even amid the chaos there is design and things get done. We experienced that most recently on our shuttle ride between the international and domestic terminal and the fearless bus driver who drove headlong into a mass of oncoming headlights on a sometimes one-lane tramway. To the horror of the foreigners and the inattention of the nationals, he initiated toward the way-less-than-bus-sized space between two oncoming trucks and there is an indescribable, fluid process of challenge, collaboration and mutual yielding until all are back on their way.

And it happens way, way more than you would see in the U.S. It suggests to me that there is some kind of internal order amid all the chaos that is so ingrained in the Indian psyche that It would take more than the millennia that forged it to find out what had been really created.

Everyone is on campus now and quickly bedding down to start repaying their sleep debt. You’ll hear more about the delayed flight, the bus breakdown the iffy power grid and the flower pedal charged reception tomorrow. But I did want to drop you a quick line to tell you that it’s great to be back.

The world is a book and those who do not travel read only one page. – St. Augustine

republished from cemindia.blogspot.com

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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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Dancing On

On September 3, 2012, in Julia's Journey, Personal, by Chris

The summer is nearly at an end, and we took in the waning hours of the Labor Day weekend with an art show and parade in nearby Franklin and some well deserved afternoon napping. Julia has been down for over two hours; and though she needs the rest, it’s always hard not to dread the implications that a late afternoon nap has on her nighttime routine.

Everyone who sees her says that Julia has grown so much. I’ve observed more than once that she looks more like a little girl than a baby now – her now frequent army crawling all over the house having lengthened her out some. She’s started to lose that marvelously squishy pudginess and those awesome and kissable “fat cuffs” on her wrists are starting to fade.

A lot has unfolded with this little girl over the summer – much of it makes me smile as I think about it. I have love watching her engage more and more and begin to truly understand the things we are saying to her. Jocelyn and I have had whole conversations lately spelling out the trigger words that get Julia excited, like “d-i-n-n-e-r” and “j-u-i-c-e”. She’s also starting to work on the hand signs for some of the songs her toy puppy sings (Head, Shoulders, Knees & Toes is one of her favorites).

And of course, there is a lot of therapy. And it’s perhaps there that the more discouraging parts of the summer come out. Let me start by saying that it’s not her progress that’s disappointing – far from it. As I’ve explained in a previous post, we have to take care to let God and Julia determine who she is. But at the same time, Jocelyn and I work really hard removing as many barriers to her progress as possible. Despite our aspirations, it has felt like we’ve spent the entire summer coming up against one roadblock after another.

We have slowly been moving from wide-eyed ignorance into rueful realization when it comes to interacting with any institution – be it the state, the insurance companies or the school district. I know every parent out there – with typical kids or special needs – is smiling and shaking their head. Bear with me – I’m still new at this.

It started with being denied summer services from the school. Okay, not a big deal – happens all the time, we’re told (at least in our district). But it still felt like a kick in the gut. It was then that I started to understand what every parent feels when their child is denied something. “They don’t know our family! It’s MY job to deny my kid!”

We decided to roll the dice with our private insurance to bridge the gap over the summer. Success! Julia was approved for eight sessions and the work began in earnest. We got a lot of great tips from the therapists and an interesting new motivation. It seems that getting a child to walk “unlocks” a lot of other development – including speech. In fact, we were told that the speech therapists at the rehab facility don’t typically want to see kids who aren’t already walking since their progress is so much slower.

That little piece of info, along with the promise of assistance from Julia’s state supplemental insurance, ignited a little dream in the Cook family – one that I’ve articulated only a few times. We decided to go “all in” and get our Julia walking by Easter.

I know that setting a goal like that breaks the aforementioned maxim of letting God and your kid determine your kid; but the way I thought about it was that it wasn’t a goal for Julia as much as it was for us. Let’s pull out all the stops and commit ourselves to getting her the help she needs to really fly. If we miss the mark, she’ll still be a lot farther ahead than if we sit in relative complacency. So I dared to share that dream with a couple of the therapists – one from the school and another from the rehab facility.

And I got silence. I’m not sure what that means.

We got another disappointment or two as well. Our private insurance denied any further therapy, saying that Julia had a “developmental delay” that will not show significant enough improvement within the window of time that their policy demands. Not more than a week later, we were told by the rehab facility that the state supported therapy would have to be suspended indefinitely since the state was not paying providers for their services. The last session was a week ago.

We still had our head up, though, because our original mission was accomplished. We had bridged the gap in services over the summer and set Julia up to really excel when Early On services start up in a few days.

In the end, we are still going to work. Hard. And we will have to continue to give our little girl to God every day – sometimes more than once – and trust that his plan for her is totally, totally good.

I watched Julia this afternoon in a new ritual we have of turning on the iPod and dancing together with joyful abandon (sorry for the image I just put in your head of me dancing). I envy her carefree spirit as she wiggles and twists to her favorite tunes, and I can still hear her elated giggle in my head as I write. I’m sure I’ll spend another day worrying about whether we’re doing enough – it seems to be hard wired in me.

But Julia has other concerns at the moment: “What songs are we going to play and are we having grilled cheese for dinner?” Her musical taste biases more toward Sara Barielles and Andy Grammer, but any catchy tune with a good beat will suffice. For now and for the future, I’m happy to do the worrying while Julia dances on.

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