on the eve of casting.

img_8779Tonight, Gabriel had his last “real” bath for a while. Tomorrow, we will make our way to Shriner’s for full leg casts that will prepare him for a January 12th surgery, after which he will be casted during the healing process before transitioning back into braces.

Advent has drawn to an end, yes, but there is still so much waiting, so much longing for Him to come. I’m asking Jesus tonight to show me what it is to embrace the Christmastide season, not to say farewell to the deep relief in His arrival, even to the celebration just yet. The Word was made flesh that He may dwell among us. Made flesh. Like the flesh that will be wrapped in casts tomorrow, like the flesh I can’t stop kissing before I bid it farewell for too long.

We say so often, “it’s just a season,” myself as much as anyone else. And sometimes that’s a comfort, sometimes we need to remember that something will end. But right now, as I think the residual ache of Advent, the remaining wonder of Christmastide and the awareness of His nearness I find that they offer me a treasure that will only be found in embracing these days in all their pain and pleasure. That we have a God who knows the frailty of these human bodies because He resided in one is a comfort greater than any self-made resolve could ever be. He knows. He does not empathize, He sympathizes. He does not condemn human weakness, body or soul.

I’m grabbing hold of the wonder of the incarnation, of the body, the flesh, the humanness. And when this baby is wrapped in casts tomorrow, lying on a clinic table, I’ll remember the baby wrapped in swaddling clothes, lying in a manger. When Gabriel has moments of pain and discomfort, when we are exhausted and spent, I’ll remember the One who has felt every bit of what we are feeling to a greater degree than I could ever imagine yet has compassion on us. When surgery comes and goes, when this journey seems that it will never end, I will remember that my hope is not found in the bodily remedies of a broken world but in the Body that died and was raised.

We find life, hope, joy, the will to endure in the power of the Incarnation, the nearness of Him and Him alone. Nothing else will do.

“And lo, I am with you always, even to the end of the age.”

this Christmas.

I wrote this post two Christmases ago, just before I became pregnant with Gabriel. This post that reminds me of so many things. It reminds me of something I really need no prompting to think upon, that is both a blessing and a curse – the truth that I have never been able to rest inside the quick quips sometimes so prevalent in modern Christianity, inside the expressions of faith that seem to perceive questions as threats, pressing hard as bailing out. I’ve never felt this way more than I do now, but I felt it back then too, this post reminds me. And I’m thankful for that reminder, because sometimes it is hard for me to remember how I thought in those days, those days before Gabriel, his story, our journey. It is near impossible to remember the lenses I donned in order to see the world, attempt to grasp it. It seems now like everything was so different, whitewashed memories tempting me to paint pictures of Egypt as Sara Groves once sang, to think back on that long dead grass as greener than the grass before me now.

The post reminds me that the struggle to truly understand the idea of protection, of what it is to be protected by God, to suffer yet hide in the cleft of the rock, waiting for Him to pass by, has near always warred inside me. The battle wages even now, especially now. And while in certain moments I long for the days of what I thought would be, what I thought December of 2015 would look like, I am taking heart in the fact that the Lord planted seeds of faith in me long before I knew I would need the fruit they would eventually begin to sprout. I am thankful that I was unwilling to accept pat answers, blanket statements when it comes to the things of God, though sometimes I wish I could be satisfied so much more easily. But I can’t, and I’m so very slowly accepting that, accepting all that it means. I need the war. I need the struggle and the battlefield. Because while, yes, it is my call to only be silent as He fights for me, it is also my call to take heart, to put on the armor, to expect trouble. And perhaps the cleft in which I am called to hide, the one in the Rock, is both a haven for rest and camp for preparation, a fount of rejuvenation and a cliff of expectation.

The true light, Who enlightens everyone, was coming in to the world.

Scripture tells us this, and how desperately we need it to be true. Only those who have lived in darkness need the Light. Only those who have seen how black the night can become, how the shadows no longer exist merely outside of them, but have crept inward, dimming their souls as well, only they need the True Light like they need air to breathe.

I have never needed Him more, and I admit now that I have perhaps never understood Him less. But with each day that goes by, I find myself not fearing the questions quite so much. I step out onto the battlefield more sure of my footing, not because I understand my surroundings but because I am sure that my lack of understanding does not limited His God-ness, does not place me on the wrong side of the battlefield, does not change the fact that He has already won and that because I am inside Him, I am victorious as well.

I am not proud of my doubt, but I am not ashamed of it either. And there is something inside me, some little voice, determined to be heard, that urges me to consider that perhaps He has carved out space for my doubt in that rock’s cleft, perhaps that carving is evidence of Him. Perhaps the ground He has prepared that we might wrestle, that I might thrash against Him to see if He is actually there, is His way of helping my unbelief, of showing me that He does not crumble when I question, that He does not shake when I am unsure.

I find Him now to be magnified in my searching, to be exalted in my limitations, to be infinitely wise in my finite frustrations. I am seeking, and I am finding the One Who has found me, Who does not look like I want Him to, Who beckons me to discover that the reality of Him is all the more beautiful, all the more loving, all the more protective than the paltry god figment of my imagination. I’m asking my soul now to come awake, to be soft enough that I may be wooed by Him, to be comfortable in the questions, yes, but at peace in the lack of answers as well. He is more than answers, this is the part of Him I am really just discovering. There is so much of Him to know, yet so much of Him that is Mystery.

The true Light, Who enlightens everyone, was coming into the world.

This Christmas, perhaps the greatest enlightenment I need is not the enlightenment of clarity, of questions answered, but of the Light shrouding me in its shimmering brightness, enveloping me in the glory of the Mystery that is the One Who Came. I will never stop pressing, asking, looking. I think I would cease to exist if I did; I do not know myself without questions. But I can know Him without all of the answers. He came into the world, and He is coming again. And perhaps all that I will ask from Him today is for the grace to dwell in the mystery of all that was before that coming, all that is carrying on in this meantime, this chaotic space before He returns.

And perhaps my lack of understanding, my growing awareness of how little I really know of Him, stems from the truth that with every concrete bit of Him that I feel I have obtained, an abstract mountain of mystery comes with it. He is intimately knowable, yet beyond my capacity to grasp. He is not to be contained, and I am not naturally inclined to like that. But He compels me, not simply to like it, but to treasure it, not simply accept it, but to realize its mystic beauty. And I’m deciding now that this Christmas, for me, for my heart and soul and ever probing mind, is not a Christmas for the concrete, but for the questions. It is a Christmas for one truth undeniable, He came, He is coming again, and for being windswept into the swirling power and grace and truth and love and the promise of Peace surrounding the Great Mystery.

Maybe that is what all of this has been, these days of feeling so tossed about, so thrown. Maybe that is what it feels like sometimes to be caught up in the fury of His love, of life with Him. This is a Christmas for thoughts like that. This is a Christmas where I am beholding His place, His magnitude, His Mystery. This is a Christmas where I will not be striving for much else, not at all. And maybe, in the swirling storm and the winds whipping, I will find Him.

on writing, on what it’s like. 

Sometimes, when I sit down to write, the times when I am not so overcome with the impulse to write that I type furiously on my phone or, speak a hundred miles an hour into a voice memo, the times that aren’t like that, I try to be very intentional, very purposed. I carve out time, I work with Jared to find the moments, to make sure our children have what they need, to make sure that our family’s wellbeing will bear the weight of my absence for a while (which it always does). It’s funny what happens next, what happens when I light the candle and cozy in to the chair in the front room, the one with the bay window, the one looking toward the house across the street where the neighbors are putting up their Christmas lights. I open my computer or journal, or I read a few chapters of a book, Jeannette Walls or Ann Lamott, for example, just to get myself in that writing mood, that elusive, wondrous, part truth part fiction state of mind, and I try to get started.

And then I check Facebook.

And my email.

Also Twitter and Instagram, just in case of world news or someone having a baby or something.

Oh and those bills I’m sure I paid but maybe just perhaps I’ve deceived myself and we’re actually months behind, late fees heaping, and if I don’t pay them RIGHT NOW our lights will be turned off and my kids will freeze in this winter cold.

Except that we live in Texas. And my bills are on auto-pay. But other than that, it’s a totally rational concern.

Once those concerns are assuaged, I turn my focus inward for a moment. How am I doing? How do I feel about this? Do I want to write right now? Will I even be able to produce anything worthwhile? It’s 5pm. I bet if I’d sat down at 3pm, even 4pm, I tell myself, I would feel like writing. But I waited too long, the moment has passed, all is lost. It’s too late for coffee, I need to feed the kids soon, the Rubbermaid tubs of holiday décor are still sitting in the foyer, open, half emptied, waiting for a sudden urge to complete the project to wash over me. I feel grumpy, annoyed with myself and/or anything else animate or inanimate within my sightline, earshot, or mind’s reach. I am peeved, silly, untalented.

Dramatic as well, apparently.

Well, I could just start writing, I tell myself. But what would even come out? Surely nothing. What’s the merit of “just writing?” Will this ever even be seen by anyone. I HOPE NOT because it’s going to be awful. But, no, wait I HOPE SO because if no one ever sees it then WHAT WAS EVEN THE POINT?! If a tree falls in the forest and all that. Sigh. Writing, you untamable beast.

But I try it anyway. I try it because there’s too much evidence on the side of the courtroom marked “In Defense of Writing.” I smile because most of the evidence in that bursting file is page after page after page of entries, of records of the times I have sat down in frustration or confusion or feeling just a bit “off” or knowing I had something to say but absolutely no idea what it was and as soon as my pen touched the page or fingers touched the keyboard…out it came. Words. Words that must have been in there all this while but I’ve just now taken the time to acknowledge them.

Writing is the art of a listening heart, “ Julia Cameron tells me in The Right to Write.

I read this during one of those few moments of reading before I attempt to create, before I step out onto the precipice of discovering if I actually have anything to say at all, a precipice no less frightening the thousandth time I approach it than it was the first. I wonder if this is how mountain climbers feel, or skydivers or downhill skiers, like there’s a burning flame inside them, burning hot and wild, refusing to be put out, threatening to consume the body it dwells in if the soul that resides there won’t just step up to the precipice, take the first step up the mountain, the leap out of the plane, the glide down the white snow.

The fingers to the keyboard.

It’s funny how memory works in all of this, how I have every reason to believe that when I sit down to write, something will come out that I am glad I said, even if it’s not for public consumption, even if I’m not quite sure what it means. Just the act of saying something, of knowing that my mind holds thoughts I’m not even aware of until I give them the honor of being heard, is a comfort. Writing, the art of a listening heart. Yet I still get nervous each time, still wonder if there’s anything left in there, or was there ever anything in there at all? Sometimes I even go back and start reading old pieces I’ve written, baiting myself, looking for a typo or incomplete thought or botched metaphor so that I can tell myself I’m not really a writer and I should just go do something else, something more contained, more measurable, more certain and predictable. I try to let myself off the hook, convince myself there’s a better way to spend my time, or at least a way that’s less emotional, less risky, less unknown. But it doesn’t work. The flame just burns hotter, provoked, spreading.

The fingers to the keyboard.

When I write, though thoughts may have been brewing for a while, I still don’t really know what I am going to say before I say it. Ever. I may have a few bullet points that I assume will be included, but I never, never, never write from an outline. In high school, when I had to turn one in, I would write the paper then go back and write the outline. It’s just my way. I love language too much to fragment it like that. I can’t start there. I have to start in the mess and work my way up out of the mud. If everything starts too neat, too tidy and structured then I may miss that brilliant dash of color just outside the lines, that splash of paint unplanned but profound. This is not a better or worse situation, good or bad or any of that. Plenty of writers begin with meticulously plotted points, certain of their beginning, middle and end. I respect them greatly, but I just can’t do it. I’ve tried it, and I’d rather, well, climb a mountain or jump out of a plane. My precipice requires fog, requires me to buckle down, listen close, turn on the headlights and drive, trusting that the light will guide, that there’s something to find here, something to see. Keep going, I hear from somewhere out there (or is it somewhere inside me?), you can’t miss it.

Writing, the art of a listening heart.

So there’s mud and fog, mess and uncertainty, like weeds crowded around, in and through this path toward the precipice that beckons me. And I’m marching ahead with my flashlight and boots, a little unsure why I’m even here at all, it was warmer inside, of course, safer. But deep down I know that I’m here because I have to be, because I’m called to this place like a sailor to the seas and to deny myself the risk would be to forego the indescribable waiting pleasure. The true belief, the true awareness, the true value of this gift, this confusing, nagging, life-giving gift of writing, is only found in that step off of the cliff, that rush toward the ground. It is only found in that first step into the dark fog, the seeping mud, the first step that says, “I choose the unknown and the mess.” What is found on the other side may not be control, it may not be the clean lines I crave or the certainty I’m hoping to find, but it’s something glorious all the same, even more, really. It’s the answers to questions I didn’t know I had, the lyrics to the melody I’ve been humming on the journey. It’s the glimpse at the new precipice, the one for next time, exhilarating and daunting all the same.

Fingers to the keyboard.

Writing, the art of the listening heart.

I tighten my boots and keep walking, toes over the edge. And this time, while the fall may be just as frightening as it has ever been, it feels ever so slightly like home.

when I wish there was not more news to share. 

Last year, around this time (which is something it seems I am constantly saying these days), I started having nightmares. This wasn’t shocking to me, as nightmares have been a consistent form of stress response and, I believe, spiritual attack in my life for over a decade. We were in the midst of Gabriel’s serial casting, surgery, braces, bar; we were just learning that the condition was more serious than “just” clubfoot. I had recently discovered his clasped thumb as I played with him on my bed, a moment I’ll never forget. My brain changed as I sat on that bed, planting a thought I war with constantly now, “what’s the next bad thing that will happen?”

On the heels of that question burrowing into my mind, the dreams began. Though similar to seasons past in their intentional torment, these dreams were different, harrowing in a way I couldn’t shake, specific in their revelation of my fears. I was dreaming that Owen was suffering. He was vulnerable, harmed, in need, and I hadn’t been there to protect him. One in particular consumed me the following day. “Bad things were happening to Owen,” I told my counselor, a few friends, Jared. “I know why I’m dreaming this. It’s because I think of him as the untouched one. He’s the one left.” My mind was in a cycle of waiting for the next shoe to drop, and, sadistically, thought it “should” drop on Owen.

When the genetic results came for Gabe, “two mutations in the AARS gene…both come from you, Mom,” we knew immediately that Owen needed to be tested. It was a simple blood draw, he handled it so well, never asked why and I never told him. The sample was sent off to a lab on the east coast and, because there were so many things to focus on with Gabriel, not to mention the “normal’ busyness of life with two young children, we were not consumed by the waiting. Perhaps, really, that’s because waiting has become a constant part of our norm.

Yesterday, we had Gabriel’s first genetics appointment. We met with an intern, a genetic counselor and a geneticist, in a room just like the rooms where Gabe has been casted, where we’ve heard news that changed our lives, altered our paradigms entirely. If I’m being completely honest, I have started to hate those rooms. They hold hope and knowledge, yes, but they hold a great deal of pain, past, present, and I assume (rightly or wrongly) future as well.
We did not know what the appointment would entail. Was there more information on Gabriel to share? Next steps? Decisions to be made? Did the geneticist agree with how the neurologists interpreted the results? Speaking of results, were Owen’s back?

Yes, they were back. Yes, Owen has both of the mutations in the AARS gene.

Owen. The untouched one.

There was a 50/50 chance for each son that he would receive the copy of my DNA with the mutations. A 50/50 chance. They both have the mutations. As the geneticist said to me yesterday, “chance has no memory.”

No, I suppose it doesn’t. But this is where belief, where faith and hope and sovereignty get complicated and tricky, where they leap off of the textbook page, fully dimensional in their definitions, and I so badly want to go back to the days when I read them in black and white, studied, memorized, said, “I believe that” and moved on with my life. It may be very well true that chance has no memory, if chance is even a factor at all, but I know for sure, beyond a shadow of a doubt, that God has a perfect memory. I know that chance did not create my children. Chance did not weave together their DNA, nor did chance allow for mutations to occur, allow for pain and brokenness to trifle with new life. God did. That’s reality. Did he create mutations? No. Did he mandate brokenness? No. Did he allow both of my children (as well as me) to be discombobulated on a cellular level? Absolutely. If He didn’t, He isn’t God.

See how hard this is? Tonight, as I sit here in an eerily quiet house, Jared (aka Dad of the Year, Man of My Heart) has taken the boys to a basketball game and I am typing with my eyes closed on the couch, fingers flying across the page, and all I know to say is this – my soul requires, my faith requires, the Spirit within me requires that I believe that God allowed each moment of pain we are experiencing. Isn’t it amazing how much easier it is to believe these things for other people? I have observed human suffering that goes unbelievably beyond what our family is experiencing, I have read about refugees, studied the foster care system, gazed upon the homeless community and, while my response has absolutely been to engage however I can, it has also come with a side, a main course really, of “God sees. He knows, He sees, He has allowed. And He is still good.”

Because the thing is, who the heck is this God if He does not see? If He missed this one. If the day my children were being formed He didn’t correct the typo showing mutated genes? I say all of this a bit tongue in cheek, but only to have the wherewithal to get it out onto the page. At the end of the day, I mean it. And I’m asking. If He didn’t see this, then Who is He? He’s no one. And because He is good, because He is giving me faith that I don’t even understand, not even a little, I know that He is not no one. He is the Greatest Someone. And because He is the Greatest Someone, He knew. He saw, he knew, he allowed. Not one mutation, but two. Not one clubbed foot, but two. Not one surgery, but two (and counting).

Not one child, but two.

Owen, the untouched one.

The truth of the matter is that we do not know if Owen will ever show symptoms. I have never shown symptoms. The genetics lab is digging more deeply into Owen’s results, looking for variances between his DNA and Gabe’s, for possible explanations of why Gabriel is presenting so many problems so early, why Owen shows none.

He may never show anything. Not a thing. Or one day, he may try to run across our backyard, but he stumbles. He is confused, so he tries again. He stumbles again, spraining an ankle that has previously seemed strong, carried him well. Or he may start to say, “what?,” more often. And after I realize that he actually cannot hear me, I’ll remember, I’ll remember that he could start showing signs of deafness. Or not. We may walk through his entire childhood, he may walk through his entire life…well, literally. He may walk just fine. He may hear just fine. He may never even need to engage this on the personal level, other than awareness of the knowledge whenever we determine it’s best for him to have it. This may always be a part of Gabriel’s story for which he has empathy, but not sympathy. Or, he may find himself braced one day. We don’t know. We are not living in fear. But we are aware, and we didn’t want to have to be aware.

There is already so much awareness. There is already the bare baby feet I see while walking through a store, standing at church, and my breath is taken away. Awareness. There is already the continual glances down at Gabriel’s new braces, the ones he is supposed to be wearing 23/7, the ones that keep slipping, that he hates, that make sleeping nightmarish, just to bring things full circle. There is already the twinge of pain in my chest when Owen asks when Gabe will be able to play soccer with him, when he will walk, when he can teach him how to play baseball. Awareness. There is already the forcing of myself to schedule routine life things, fun things, work things, regular things, new things, with full awareness that I may have to cancel for an appointment, a surgery, a new discovery. There is so much awareness.

And now there is not one to be aware of, but two.

I am writing from such a raw place, which is perhaps the most common feedback I receive about this blog. “You are so raw, so vulnerable.” It occurs to me that on the other side of rawness, someone is bleeding. On the other side of vulnerability, someone is naked, unprotected. I am hesitant to even publish this while I’m in this frame of mind, while I’m recognizing that, yes, it is good, beautiful even to be raw, to be vulnerable, but that doesn’t mean I want to be. I believe in the power of vulnerability, or maybe I just believe it for other people. Maybe the publishing of this post is the greatest act of belief I can muster today. Maybe the bleeding and the nakedness make it all the more easy for Him to show through me. I don’t know. I hope so.

Because I know so many will want to know, because I want to know myself, I’ll tell you that there aren’t many next steps for now. As far as Owen, we watch, we wait and we ask God every day to keep us focused on Owen as a person, just as we ask Him to keep us focused on Gabriel as a person, not as a patient, not as a problem, not as a potential tragedy. These are our children. They are our joy, our treasure, our prize, our adventure. None of that has changed. None of it changed when we had Gabriel’s first revealing sonogram, when he was born, when test after test after test came back with more questions than answers, and nothing changed for Owen yesterday. While they may be the ones’ whose bodies house so many questions, so many unknowns, they are the ones whose hearts, whose laughs, whose discoveries and affection provide the greatest comfort, joy and grace to us.

Isn’t that just like God? He gives and takes away, sometimes seemingly all at once. He allows questions to linger and He answers questions we didn’t even know that we had. I have lists of questions in my mind, some even on paper, and they may never be answered. But, in a way, this post is evidence of so many answers He is giving to questions I never verbalized, of so many lessons to learn and truths to believe and gifts to open.

I come to the end of myself, in a way, when I write. I start tangled and messy, unsure and, really, a little frustrated almost every time. And then it starts to spill out. I pour out of me, He pours out of me. And at the end, I believe more than I did when I began. These posts are my cry for Him to help my unbelief. And I want to say that while I still struggle, while I am still angry and sad, I am still stunned and swirling, I believe. And I believe that He will continue to help me. He will continue to find me, and I Him. I am not alone. He is with me always. I am not one, but Two.