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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A Year (and a Lifetime) Ago

On June 12, 2012, in Julia's Journey, Life, Personal, by Chris

Tonight I was reminded again that sometimes in the crush of the day to day, I need to remember to sit and be grateful every now and again.

It started innocently enough. I was dealing with a typical “first world” problem and rearranging some stuff in our refrigerator so that I could somehow wedge more stuff in. I was in the middle of marveling over how many different mustards we had when my eye was caught by a small brown bottle in one of those shelves in the refrigerator door.

It was the Enalapril – a medicine that we gave Julia after her surgery to protect the delicate work that the surgeon had done on her heart valves. We stopped giving it to her after we got the okay from Dr. Weinhouse last May. That was over a year ago.

But for just a moment, as Jocelyn finished cleaning up from dinner and getting ready to meet a friend for coffee, it all came flooding back.

I sometimes marvel at how seldom I think about those first intense months of Julia’s life when the needs of little girl now sleeping happily upstairs utterly overtook our household. But I marvel all the more at the little touchstones that God puts in my path to remember and say “thank you”.

It took a small brown bottle of long-expired medicine to remind me of the nights of sacrifice common to all new parents, painted over with a thin watercolor tint of uncommon terror as we painstakingly documented every milliliter of fortified milk that she took in. Staying mindful of the 150 kilocalories per kilo of body weight per day target that the docs had set for a healthy weight gain, we celebrated when she was able to fight through the fatigue of a failing heart and take in a whopping sixty milliliters in one feeding. And it often felt like the world was going to end when she spit it up like any normal baby does from time to time.

But we stayed even more mindful of the drugs that kept her comfortable before her surgery and protected her heart after we brought her home. Dosing, timing and praying to God that she wouldn’t hurl it up after we gave it to her. Dr. Weinhouse told us in so many words (and out of his love and concern for us) to chill out a little bit, and toward the end we started to.

But before too much longer, it was done. May 30th, 2011. Julia took what we pray was her last dose of heart medicine for a long, long time.

And as you can tell a year later, she is thriving. Now we have a whole boatload of new challenges: therapies to get her strong and mobile (not much longer!), negotiating with the school’s special education department for services over the summer (no dice) and thinking through the implications of the selection of a new school superintendent. But for all of the challenges, we find ourselves enjoying the present far more, even as we prepare for her future.

But sometimes it’s important to remember what has passed, remember God’s presence in it, and say “thank you”.

Oh yeah, and remember to clean out the fridge a little more often!

Good to be back…

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Intrinsic Good

On March 20, 2012, in Commentary, Julia's Journey, Life, Personal, by Chris

There was a lot to be thankful for today. It’s the first day of Spring after the mildest Winter on record, Detroit had an 80 degree day in March, Julia celebrated her eighteen month birthday and I have the evening off!

For all of those great things, I am thankful. But I’m also finding myself pensive, a little crabby, and a little weepy – simply not knowing what to do with something that’s come to my attention. The only thing I’m sure of is that I cannot remain silent. And the risk for you, dear reader, is that even as I start this post, I’m not quite sure how I’m going to turn it around into something even remotely upbeat.

You might have seen the small seismic “ping” over social media a couple of weeks ago. It spoke of a paper from a mainstream academic journal making a philosophical case for (are you ready?) killing a newborn when its care would be an “unbearable burden” on the family or society as a whole.

I’ll let you sit with that for a minute.

I’ll also tell you that I am shifting in my seat as I write this knowing that, in your incredulity, you read that last paragraph more than once hoping it would come out different. Yep, their proposition would include and perhaps even single out children with special needs for infanticide. It would put yet another set of crosshairs on kids like Julia.

Believe it or not, when I saw the link to that article come up, I did what a lot of us do. I read the link description, scanned through some of the uniformly acidic comments of justified indignation, shook my head and moved on. And I pretty much forgot about it.

But when a friend of mine gave me a printout of the actual article about a week later, I got the horrible feeling that I wasn’t done with this. I couldn’t simply sit in my ignorance on the sidelines anymore. I would have to actually read it and take full responsibility for my revulsion. Even in situations where you know you are going to hate every minute of it, you can’t have any integrity in saying, “I disagree” without being able to say, “I understand.” So I read it. More than once.

Turns out the article was peer reviewed according to standards of the journal that published it. And the sad reality is that its propositions are not all that new or groundbreaking. The concept of infanticide is not a new one; nor is it outdated in its practice in some parts of the world. I already knew that and up to this moment have done very little.

I wanted to do due diligence and really hear more of the dissent and support for the article, so I clicked on the journal editor’s statement in defense of its publication and his indignation over multiple death threats that the paper’s authors had received. I got less than halfway through the comments by people way smarter than I (many of them really articulate) when I got to the heart of the matter – at least for me:

I’m just a dad who is often in way over his head when it comes to actually being a dad. But in my moments of clarity, I see intrinsic, inestimable worth and potential in my little girl.

And it scares me a little bit that some others don’t. It frightens me that there is some faction in the global community that could see their way clear to assign value to one over another because of the perceived burden their life would put on others.

I’ve never talked about this publicly, but reading the article took me back to the moment almost two years ago that a doctor told us about Julia’s heart defect and asked if we even wanted to continue with prenatal testing. As soon as we found out that her life was not going to be typical, there was an overt presupposition on the part of many on the medical team that we would opt our kid out of living the life that God had laid out for her.

And I thank Him. Every day. That we didn’t make that unthinkable choice. Because Julia Paige Cook in her brief time on this planet has helped others know joy.

But at the same time, I cling to the conviction that human life – in all of its inconvenience – is intrinsically and uniquely good. And even as I am repulsed at the propositions put forward by the writers of the article, I simply cannot join the chorus of shrill voices of opposition who have gone as far as to threaten those same writers’ lives in order to quiet their voices.

I have to choose (moment by excruciating moment, sometimes) to live in the tension that if there is room for dialogue, then we should keep talking. Even when the space between our convictions feels so vast, Love demands that we keep striving to find peaceful common ground for as long as possible – and “possible” is way, way longer that we are often comfortable with.

Because Love died for those two writers as well.

But at the same time, we don’t have to simply sit by and let this debate go on in the rarified air of philosophical academia. I (and you, if you’ll join me) have a cool opportunity before us:

One of the preeminent organizations for Down Syndrome, the Down Syndrome Research and Treatment Foundation, has a primary goal of driving research to improve the learning, memory and speech of people with Down Syndrome by fifteen percent. It’s called the plus15 Campaign and it could make all the difference for the long term independence and quality of life for kids like Julia.

Wednesday, March 21st is World Down Syndrome Awareness Day. We could really make a dent in the arguments of the “opposition” if we skipped a lunch this week and gave fifteen bucks to the plus15 Campaign and asked fifteen friends to do the same. And if you do it on Wednesday, the DSRTF has made a 3 to 1 match available to turn your fifteen bucks into sixty! Go ahead and check out their Facebook page as well.

I’ve not often been one to leverage my friends for a cause, but I have way too much skin in the game to let this one go by. And I simply cannot let her small and as yet unformed voice be drowned out.

Thanks for listening.

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Heart Day’s Eve

On January 16, 2012, in Commentary, Julia's Journey, Life, Personal, by Chris

I rocked my little girl to sleep tonight.

I know that’s not such a news flash. In fact, it’s pretty routine around our house. Even though all the experts say you shouldn’t let your baby fall asleep in your arms, but lay them down while they’re still awake so they can self soothe and all of that, I indulged myself a little bit, just for tonight.

I also cried like a little girl when I read Julia one of her bedtime stories tonight.

Okay, that’s a little less routine. Jocelyn was out at her book study and Julia and I had a great night playing stack up cups and tossing her rattles around and knocking down blocks and doing our silly little dances together. Then she gave me that “I’ve had enough” look and we settled into a few books before I took her upstairs. And I have to admit that something caught in my throat when I read those words to her:

For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.*

*Taken from a great children’s book called On the Night You Were Born by Nancy Tillman. Find out more here.

I have read those lines I don’t know how many times before, but tonight I couldn’t even get through the second stanza before I sat there, thunderstruck and weeping at the realization of what a gift this little girl was in my life. As I tried to compose myself and read through the blur of tears, Julia looked up at me with her wide, innocent eyes, knowing that this was not the usual program.

Okay, I’ll let you in on the mystery behind all the waterworks. Today marks the eve of a very important anniversary in the life of the Cook family and Julia especially. It was a year ago tomorrow that we handed her over to the Cardiovascular Team at Children’s Hospital for an eight hour procedure that made her life a year later even possible.

And it all seems so long ago now…

I took some time this weekend to look back at some of my posts from those seemingly endless days just to jog my memory of what we were facing. The pictures from the surgery day still make me gasp.

But the interesting thing is that we really don’t think about the scary stuff any more. The only reminders we really have is the fading scar on Julia’s chest and a very infrequent consult with her cardiologist.

A year ago, we were gutting it up for eight hours of surgery. Nowadays, we are gutting it up for the war of wills when nap time comes around.

A year ago, we were dosing out four different medicines at several specific times each day. Now we’re doing high fives if we can get a sometimes picky eater to down all of her peas.

It all feels so… normal.

Yes, there’s the morning ritual of her thyroid medicine and the regular (and frequent) adjustment of expectations that come with the territory when you have a kid with Down Syndrome.

But with God’s grace, the prayers of so many and the hand of a skillful surgeon who had the humility to know where his skill came from, our baby’s heart is just fine.

Thanks for celebrating January 17th – Julia’s Heart Day – with us!

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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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