Sometimes, my heart cannot hold it all.

You walk back and forth across the room, over and over. Between my arms and Lauren’s, you cross the space between us again and again, as she and Bud watch your feet, your legs, your knees.

“Keep going,” Lauren encourages you. “Back to Mom, okay? Slow feet, Luisa, slow feet.”

You sigh with exasperation and fall forward into my lap upon arrival. “But I’m TIRED!”

I can tell that your patience is starting to wear thin, but the impish gleam in your eye tells me that you’re not too tired just yet. “Come on, walk back to Lauren again – just a few more times, Lulu. You can do it,” I cajole.

“I’ll give you a surprise when we’re all done,” Bud’s jolly voice booms out, matching his Santa Claus-like appearance. All he needs is a red suit.

“What surprise?” you demand to know, with glee.

Bud isn’t listening, though; he and Lauren are murmuring their observations aloud. I can hear them, but I don’t really know what they’re saying. I hear words like “heel lift”, “rotation”, and “hyper-extended”. They don’t seem to be in agreement, or maybe they’re just both confused.

“Can you walk back to Mom one more time?” Lauren asks.

Finally, the one-girl parade comes to an end, as Bud turns to Lauren and they begin to discuss the possibilities in earnest. I lift you up onto the examination table to rest, and Lauren leans over to squeeze your little legs and rumple your hair. “Good job, goof,” she says with a smile.

Not for the first time, I feel a rush of gratitude for her, this physical therapist whom you love so much. I’m so thankful that she is here at the orthotist’s office with us today. We need her input on your new ankle/foot orthotics, i.e., leg braces.

This will be your fourth pair. When we first had you fitted for braces, you weren’t even walking, at two-and-a-half years old. Now, three years later, we can barely keep you from running, but that doesn’t mean everything’s fine and dandy. Cerebral palsy isn’t a condition you can outgrow or heal from. It’s here to stay.

We do spend a lot of time trying to fight its effects, though: physical therapy twice a week, occupational therapy once a week, daytime braces, nighttime braces, electric stimulation therapy daily. The brain can’t heal, but it can be re-trained, or so they say. Our hope lies in Jesus and neuroplasticity.

Of course, you don’t know life any other way. This has always been your story; it has always been an uphill climb for you. I watch you struggle to do things that come naturally to other children, even those quite younger than you, and I don’t wonder at the occasional frustration you express. I do wonder at your joy, your laughter, your ability to take a tumble and get right back up on your feet again, completely unfazed.

And me? I’m your advocate, your number one fan. I’m the one who spends hours of my life dealing with doctors and health insurance, in special meetings with your teachers, sitting in therapy waiting rooms or at my kitchen table, on hold with Muzak playing in the background, gearing up for a fight with the billing department.

I thought, when we first got the diagnosis, that there would be someone who would be “in charge” of your needs, someone who would tell us what’s best and advise us on all major decisions. But it turns out, that someone is me. Not that your dad doesn’t help – he certainly does. He’s MY number one fan, thank God (we all need one). He loves you every bit as much as I do, and we couldn’t do this without him. But when it comes down to it, I’m the one who gathers and sifts through all the details from all the doctors and specialists and tries to make sense of the data so that we might form some halfway cohesive conclusions. In my head, and in my heart, I carry the gravity, the weight of it all, and I bear it gladly, most of the time. I am the center and I must hold.

I don’t complain. You’re my kid and I love you, and we do what we have to do – that’s all there is to it. I don’t want any accolades either, for the exact same reason. But I think some people have a hard time understanding that, so I usually don’t talk much about your disability either way. It is what it is, and we can’t live our lives as a lamentation. We press on.

But today, we are at Bud the orthotist’s office, and he and Lauren are talking to me, and I am trying to listen and make sense of their words, but I can’t comprehend them.

Finally Bud pauses, then says, “It’s like a car. When Luisa walks, she’s like a car with a stick shift. She’s got a manual transmission. But everyone else is walking around with an automatic transmission. They don’t have to think about how to do it – their body just does it. But Luisa has to think about it and make it happen.”

Listening to Bud’s words, something clicks – maybe for the first time, or maybe the first time in a long time. My breath suddenly catches. I can feel the thud of my heart, the whoosh of the blood in my veins, and the room seems to get very still. Tears prick behind my eyes.

I am the center and I must hold, but sometimes, I cannot. Sometimes, my heart cannot hold it all. I silently pray, “Oh God, please don’t let me cry now. Please.”

I am not the center. He is. He holds it all.

After a moment, I take a deep breath and blink rapidly. The room comes back to life, and I can no longer feel my pulse at my throat. The conversation continues, nodding and listening and going back and forth. The moment has passed.

Before we leave, Bud brings your surprise: a Slinky and a bottle of bubbles. You are thrilled, even though you don’t know what a Slinky is. A shameful hole in your childhood, now filled – thanks to Santa Claus Bud.

You hug Ms. Lauren and pummel her cheeks with kisses and she hugs you back, then I take your hand as we head out of the office and down the hall to the elevator. You run toward it, both feet turned in and dragging your left foot in your signature style, and press the button triumphantly, then look back at me with that “did you see me?” exhilaration on your face.

I see you, my sweet girl. I see every bit of progress that you make, every bit of ground that you lose. I see your struggle and your frustration, and I see your joyful spirit that captivates everyone you meet. I see when you get tired, and when you persevere. I see all of you, and there is so much love, it bursts forth from your smile and your laughter and comes and fills me up inside. And sometimes, it overflows there, too, and my love is a river bounding over its banks after a hard rain. Sometimes, my heart cannot hold it all.

Beauty will save the world

Empty hands. Full heart.

I just spent a weekend away, making music, creating beauty, and it was rich and glorious and beyond wonderful. I returned home yesterday afternoon, feeling fulfilled in a way that few other experiences can offer.

But the thing about making music is that I have nothing, no product, to bring home and show my husband and my children.

I have nothing to give them – no evidence I can display and say:

“See this beauty, look at this art I created while I was away for three days, while you cared for our children without me, while I spent our hard-earned money, while you missed me and I missed you. This is what I created; isn’t it beautiful?”

Music is a living organism. Unlike a painting or a novel, which is set down on canvas or paper for the viewer to come and experience over and over, the making of music happens once, and then it is over, and afterward it lives only in our memories. We can record it for posterity, but the experience of the music as a living thing will never happen in the exact same way again.

And because of that one singular life, the music becomes all the more precious, not only for those who listen, but also – and perhaps, especially – for those who make the music.

We have become a family, our little choir. We come together in Dallas twice a year, from all over the world, having learned our music on our own. We rehearse and we share meals and we laugh and cry, and we savor the wonder of not only what it is we are attempting to do, but the fact that we are actually doing it.

We are creating beauty, and people are coming to listen to this beauty – paying money to do so – and we have even spent our own time and money to be there. And every one of us believes it is utterly worthwhile. If we didn’t, it wouldn’t be happening.

At one point in the weekend, our beloved director said, “How I wish we could do this every week.” We all nodded our heads longingly in agreement.

And yet I think there is something about the scarcity of our time together that makes it all the more special. If we did it every week, would we really value the enormity and rarity of this gift that we’ve been given?

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Near my home here in Austin, a friend of a friend painted the words, “Beauty will save the world” on the backside of their fence, quoting from Dostoyevsky’s novel, The Idiot. The words face out onto a busy arterial street, in a part of the city that struggles with gangs, drugs, and prostitution, full of strip malls, pawn shops, and payday loan offices; in other words, it is the opposite of beauty.

I love this fence. It’s a subversive, guerrilla act of love and faith in the midst of something ugly and broken. We were driving past not long after it went up, and I pointed it out to my daughter Molly, age six.

Ever the literalist, as most children are, Molly screwed up her little face in confusion. “Beauty will not save the world. God will save the world!” she exclaimed.

“Yes, but what is God? Who is God?” I asked slowly, pointedly, mentally willing her to connect the dots.

Her frown faded as her eyes widened in delight, her dimples deepening as though she had just discovered a secret. “God IS beauty,” she said happily, and I smiled. Yes. Yes.

I have nothing to show for my time in Dallas – no product I created, nothing you can quantify or measure. I have only empty hands and a full heart.

But during those two days together, my choir created beauty. The people that came to listen to us participated in that beauty. And whether in large or small ways, every one of us was changed afterward for the better. And that is why we do it. That is why it is utterly worthwhile. Beauty will save the world.

Sing a new song in 2014

Today I am honored to have another post up at The Art of Simple. Here is an excerpt:

It’s January 1, 2014. Happy New Year!

What can be said about the New Year that hasn’t already been said? Resolutions, goals, plans, schemes, and dreams…each year, we arrive at December 31 with tired, weary, or worn-down hearts, and we look at the new year ahead and dream of new starts and fresh beginnings.

There is, admittedly, something very alluring about the idea of a blank year stretched out before us, all fresh and clean, “with no mistakes in it yet.”*

However, like Tsh, I’m not much of a fan of making resolutions. I don’t know about you, but when I look at my life and the year to come, I feel like I need something much bigger than just me and my resolve.

I need a new song.

Read the rest here.

Seeking simplicity at Christmastime

Our Christmas tree is going up this weekend, but we won’t be decorating it.  All of our autumn decor will come down, but we won’t be replacing it with glittering baubles just yet.  As the rest of the culture around us is diving head-first into the Christmas season, we are merely going to dip our toes in.

We are attempting to seek simplicity this Christmas season by observing the Church calendar.  According to the Church calendar, Advent begins this year on Sunday, December 1 (which is actually the start of the Church’s calendar – Happy New Year!). Christmas doesn’t technically begin until December 25.  It lasts for 12 days, and then it ends on January 6, with Epiphany.

For us, to observe Advent is still sort of a new adventure. It means that we will practice anticipation. The word “advent” comes from the Latin adventus, which means “the approach” or “the arrival”. So, it is a time of preparation for an arrival – for Christ’s arrival, to be specific.

During Lent, we prepare to celebrate the death and resurrection of Jesus, and it is a serious time – a time of fasting, introspection, and cleansing.

In contrast, during Advent, we prepare to celebrate the birth of our King. I like to think of it as though I am preparing my home for honored guests. Cleaning house, planning and preparing delicious meals, making our hearts ready, clearing our schedules, awaiting the arrival, and savoring the days ahead with joyful anticipation.

Yet this time of preparation is still separate from the actual visit from the guests. Once the guests arrive, the time of preparation ends and the celebration begins. That is Christmas. That is the true party.

So, when we celebrate Advent, this is how it looks: each Sunday, we will go to worship with our church. We will spend time together in intentional anticipation, contemplating the birth of the Savior who has come and will come again.

Each Sunday evening of Advent, we will host a gathering of friends in our home. We will light a candle together in our Advent wreath, and share in a Scripture reading, a prayer, and a song. We will choose songs that speak of the coming Savior, rather than the Savior who has already come. Then we will share in a potluck meal together – a simple but hearty feast of finger foods, soup or stew, wine, hot cider for the kiddos, and some sweets to finish. Our Advent Gatherings have become a family tradition that we hope to continue for many years.

And finally, every evening before bed, we will look at our Advent calendar together as a family. We have created a Nativity calendar that was inspired by Noel Piper’s Advent calendar. It tells the Nativity story slowly by adding another piece of the picture each day, and finally completing the story with Jesus in the manger on December 25.

Throughout Advent, we will do our best to fix our eyes upon the coming King. This means that we will choose not to fix our eyes on other things. We will slow down our pace, and make space in our schedules, and hopefully in our hearts, too.

And then, on December 24, we will finally decorate our Christmas tree. The bare branches, a visual symbol of our waiting, will be festooned with all the beauty and regalia that is fitting for a King. The songs of longing (O come, o come!) will give way to songs of welcome and joy (Glory to the newborn King!).

We will exchange gifts on December 25, and feast together, and celebrate. And we will continue to celebrate for 12 days! (Yes, in case anyone was wondering: the classic Christmas carol, The 12 Days of Christmas, has its origins in the Church calendar.) So, Christmas is a 12 day celebration, and therefore our tree will stay up at least until January 6, also known as the Feast of Epiphany: the day we celebrate the arrival of the three wise men.

We are really seeking simplicity during this holiday season, and we’ve decided to seek it by aligning our lives with the Church calendar. The craziness of the season can begin even before Thanksgiving, but once we hit December 1, it becomes a true force to be reckoned with. Resisting feels counter-cultural, but we’re going to try and stand firm against the madness by pressing in to the anticipation and waiting and preparation: of our hearts, our homes, our lives.

It won’t be perfect; I’m sure we’ll still have Christmas songs on the radio, early gift exchanges with extended family and friends, and Christmas parties with co-workers, and that’s totally okay. We aren’t trying to make rules that create more stress.

But the unavoidable hubbub gives us all the more reason to press in to this discipline, to seek stillness and quiet gladness, and to cultivate a joyful sense of expectation in our hearts. The Church calendar offers us another way.

I struggle with fear.

Today’s post is actually more of a confession. Or perhaps I should call it an admission – something I’m admitting to myself more than anyone else.

Here it is: there are a lot of things I don’t write because I am afraid. Fear. It’s there and it’s real. Fear of what people will think of me. Fear of alienating my family and friends. Fear of being pigeonholed and boxed in.

Fear isn’t the only reason that I have resisted blogging, of course, but it’s a big one. Maybe, really, it’s the biggest one. And realizing this has been a long, hard, scary process.

Here’s the thing about the internet: people are not interested in nuance. People have no time for complexity and subtlety. Issues that are require a deeper level of thought and engagement, the gray areas, both sides of the story – none of these elements are well suited for our digital age. Give it to me in 140 characters, a headline, a status update, or don’t bother.

And, well, I’d like to hope that most of my thoughts and opinions can’t be summarized quite so neatly.

But you know what? I’m willing to bet that’s the case for most of us. No one wants to think that he or she could be written off so easily. A tweet, a Facebook status update, or even a blog post can’t begin to plumb the depths of our souls, the complexities and contradictions that we all bring to the table.

I try to give people grace. I try to give people the benefit of the doubt.

I’ve just been too afraid to trust that other people will do the same for me.

So now I’m doing my best to shed that fear. Be brave, Katie.