Day #082Let me just get this out there right now. I had a really rough time adjusting my attitude last night as I put Julia to bed. I’m not sure if it was the last of the stomach bug she’s been dealing with or the contrarianism that her whimsical toddler brain has developed, but let’s just say she was a hot, crabby mess. Don’t buy all of the angelic pictures of squeaky-clean and smiling kids with Ds that you saw on Facebook last week. They can be just as much of a pill as a typical kid.

I’m glad to say the night ended better than it started, but it was Mom that closed the deal and finally got her chilled out.

I watched all of the publicity and exposure that Down syndrome got on March 21st – World Down Syndrome Day (editor’s note: 3/21 is a play on Trisomy 21 – the genetic condition that is the basis of Down syndrome), and I am still blown away at the number of lives that have been touched in one way or another by these extraordinary people. I read the blogs by writers far more articulate than I calling for change and action – not just awareness.

We spent the day visiting Julia’s cardiologist and endocrinologist for her six month check ups. Everything is good, but now the battle front has shifted from heart valves and thyroid hormone counts to attitudes in schools and workplaces – stuff we weren’t even thinking of two years ago as Julia was recovering from her surgery.

As we have settled into the routine and begun to push into the possibilities of her preschool, I’ve honestly been a little mystified at the latent attitudes that would put my kid in a box in terms of her aggregate potential. At one time or another, sometimes from a well-meaning friend and other times from a school administrator refusing to execute the plain meaning of federal law, we and other parents have been told that we need to adjust our expectations of what our children will be able to accomplish.

Our children are often denied even the most basic physical and occupational therapies by insurance companies because they are deemed to have a developmental delay and will not progress in a way that is economically feasible. There are professional educators that have written off our children in the classroom because they have decided they will spend their adult lives never having regular contact with typical peers.

Some call it coming to terms with reality. I say it ain’t reality yet. There are challenges, to be sure, but my deepest conviction is that we have not even scratched the surface in terms of the contribution to the welfare of a community that any kid with Down syndrome can make. Perhaps we need to start redefining our terms of what those contributions are beyond earning potential and worldly accomplishment.

So one week after World Down Syndrome Day, I offer you one more voice of a parent of a kid with Down syndrome and how you can help turn the tide: We can handle the medical issues our kids have. We can push through the ill-executed policies of the school bureaucracy. We can deal with the realities of their condition as they unfold. In the end, every day is World Down Syndrome Day for us.

However…

What’s the one thing that keeps a parent of a kid with Down syndrome up at night? What has, more than once, jolted this father out of a sound sleep? The thought of Julia living her adult life excluded from the vibrance and rhythm of day-to-day life that the rest of the planet takes for granted. We’re afraid that our culture will not slow down and see the beauty that we see every day and decide to invite them in to stay.

So what do we ask? Meet our kids, look them in the eye, tell them from your heart that they, like every other human being on the planet, are hard-wired for struggle in life. But they are worthy of love and belonging.

Be not only aware of Ds, but act on that awareness. Make space – real, substantive space – in your life and your family’s life to know our kids and everyone with Down syndrome deeply, and gently resist the attitudes and institutions that keep them segregated from the mainstream of life.

I think you’ll find – as many have – the effort has a return on investment that will surprise you.

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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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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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