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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2 Responses to Dancing On

  1. Ann Ehlert says:

    I read this post with different eyes now. I’m so glad for your family’s friendship and for the opportunity to watch Julia grow!

  2. Jo Fick says:

    Ah, Chris, welcome to the world of parenting. How many times I have thought “I wish I knew then what I know now”. Different problems, same experience. But, never give up fighting for what your child needs, and don’t be afraid to rock the boat. I, too, danced with my boys with wild abandon, when they were still young enough to not care what they looked like, and blissfully unaware of a world that would judge them. And I think you also know, even “regular” kids can face hidden challenges. All the more reason to be intentional about building community; life is too hard to go it alone. Our closest relationships with people are those we share our troubles and hardships with, to persevere, and see joy, love, and beauty because of it. Happiness and peace are like beauty; it grows from the inside out. Thanks for sharing, and know that you are not alone.

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