all this time and sand.

 


We bought a piano this week, an upright with well-loved keys and a bench that transports me back to hours of my childhood gone by, notes pecked out until they meant something. I’ve played the new-to-me piano just a few times so far, mostly with “help” from Owen and Gabriel, high notes shrill and low notes deep, tones bursting forth from their little hands on the keys, sounds that don’t belong but somehow, in their forming minds make mommy’s song all the more lovely. I’ve been playing from the songbook for Sara Groves‘ Conversations, an album that nestled its way into my soul long ago and carries the precious weight of seeming somehow both old and new to me each time I hear it, each time the lyrics fill my ears and spring from my mouth.


This Sunday, September 11th, will be the one year anniversary of the appointment at which we received Gabriel’s genetic test results. I think of that day as the day that we came to know that we don’t actually know much of anything.

It was the day when the shadowy uncertainty seemed to go dark altogether, the day when we sat in a clinic casting room for five hours, Gabriel, Jared, my sister Olivia, and me. There was another person there that day, a friend from childhood, Britt. Britt is a photographer, and she had asked if she could do some photography for our family, be a part of helping me tell our story. I, in what was either a moment of courage or insanity, invited her to join us at that appointment, the appointment that was a blank slate waiting to be filled.

Britt stood in that room with us, photographing moments nervous and moments sad, tucking her camera away when the weight in the room threatened to crush us. She gave us the treasure of her presence and the treasure of these images, the ones I’m finally sharing publicly, almost a year later. I guess I needed to hold them close for a while.


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One of the songs in that Sara Groves songbook, the one I keep returning to, fingers finding their muscle memory, is called Painting Pictures of Egypt. I referenced it in a post I wrote at Christmastime, three months after the September appointment. The song explores the ever so common human experience of romanticizing the past, dusting off the picture frames of days long gone and willing ourselves to forget what was outside the camera’s scope.

We want to think of the past as having been easier than the present, right? We want to believe that the future will be simpler, clearer, lighter than the present. We’d like for this moment we’re in right now, really, to be it. Can’t this please be the hardest thing, and can I be finished with it now? Can I please go back to how things were?


I’ve been painting pictures of Egypt
Leaving out what it lacks
The future feels so hard
And I want to go back.


I felt that longing for the past, for the lack of now possessed knowledge, deep in my bones that September day a year ago, the day when I learned that my son’s bones and muscles and tendons and nerves were mysteries likely to linger unsolved. I can still feel the soft warmth of him leaned against my chest and stomach, his snores whispering in our ears as the doctors spoke to us. I can still feel my heart sinking low, mind frantically racing to keep up with the deluge, not drown beneath it. I can still feel my hands rubbing the little feet soon to be shrouded in plaster yet again.


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The truth, or at least one portion of it, is that things are easier today than they were a year ago. In God’s infinite goodness, Gabriel is walking. It is not a walk that’s entirely typical, nor one that can take many steps without assistance from braces and shoes, but it is a walk, one that has become his primary mode of getting from one place to another. There are simply not enough words to illustrate our ecstasy and gratitude at this reality.

We didn’t know when the day would come. I suppose, deep in our hearts, we wondered if the day would come. In true Gabriel fashion it came unexpectedly, as though he had merely decided it was time. Gabriel slid down a playground slide, stood on the ground, and walked to Jared, the smile on his face equal parts glee and nonchalance.


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Another portion of the truth is that it’s still hard. So many seemingly innocuous activities hold potential for pricks of heartache. Gabriel needs new shoes, so we shop around town to no avail; nothing is wide enough to fit over his orthotics. I turn to the internet, confidently entering the name of one of the largest online shoe retailers. At first, I simply type “toddler shoes” and over 6000 choices return. I quickly realize that I’ll waste my time looking for extra-wide pairs if I don’t refine my search. So I search again, “xw toddler shoes” this time. 15 hits.

Here’s the thing, I don’t think actually anyone needs over 6000 choices for a pair of shoes. But I don’t really know what to do with the fact that because we live in a culture defined by the normal, intentionally designed to serve the “typical” body, my son is immediately restricted in his decision making. He has to try harder, or, for now, we have to try harder for him. He can’t go to the store to try on shoes like his brother can. Maybe it doesn’t matter. Maybe it does. I think this reality says more about how our culture views disability than it does Gabriel’s actual physical limitations themselves, and someday I’m going to write about that. But right now I’m just thinking about the fact that Owen and Jared and I have our choice of color and style and width and brand and Gabriel doesn’t.


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I’ve been painting pictures of Egypt
Leaving out what it lacks
And the future feels so hard
And I want to go back
But the places they used to fit me
Cannot hold the things I’ve learned
Those roads were closed off to me
While my back was turned


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So, it’s been nearly a year, and so much has changed and everything is still the same. Time ticking, sand falling, Sara’s lyrics still echoing in my mind. Maybe my eyes see a little more clearly now, maybe I’m a bit more sure of God’s goodness. Maybe I’m just more aware that Who He is is so much larger and grandiose than I’ve ever given Him credit for. I have questions, and a few answers, but many more questions. And so much has changed and everything is still the same.

Gabriel is nearly two now, a little boy cheerful and resilient, orthotics wrapping his feet and calves all the way up to his knees, taunting my pettier side in the way they interfere with the outfits I want to dress him in or the plans we have to go to the pool or play in mud or dirt or sand. His shoe falls off for the 20th time in a day, always the right foot, and I know because I hear him say “uh-oh” from across the room, hear him drop to his knees to scoot over to me so I can put it back on.

We have a child with a disability and I am constantly wondering what that really means, if his body is really what makes his life harder or if it’s the fact that we have made the mainstream the thing that matters and anything that seems like a deviation must absorb the difficulty of difference. So I am wondering and pushing and questioning and mothering. And it is all different, and it is all the same.


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I want to go back to before sometimes, before our life took on new layers and labels, before people asked me how I’m doing with that look in their eye, you know the one. But Sara’s lyrics call me out of that wistful state, keep me here, keep me sure of the merit of the present, the hope of the future.

I have a feeling there’s a great deal I’ve missed in the past year, so much I could have seen and grabbed hold of. But there’s a great deal that’s sunk in, too, a great deal that’s melted icy parts of me and is refashioning them into something softer.

A year gone by that feels like a decade.
A year in which the milk and honey found me some days and I longed for their sweetness on others.
A year engraved into my heart and a little boy enlarging that heart, convincing me that there’s a deeper joy I never knew, one that perhaps, on this side of eternity, is found only in the throes of pain, because the layers are being peeled back and I can actually feel down here in this place.

Sometimes I still want to go back to the easier, the simpler, the less nuanced and frankly, the more ignorant seasons of my life. I think about the lyrics, again, when those thoughts come up. And I think about the fact that God was faithful and He is faithful now. The past and future are not offering me space within them, only today extends an invitation. So we live today, the day so close to a year gone by.


If it comes too quick
I may not appreciate it
Is that the reason behind all this time and sand?
And if it comes too quick
I may not recognize it
Is that the reason behind all this time and sand?


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when there is wonder and worry.

Friday morning started abruptly, Jared calling to me from Gabriel’s room.

“Babe, I think I need you to come in here,” the slightest hint of panic, definite uncertainty in his voice.

I bolted in to see him holding Gabriel, a pale face, heaving. Something red was smeared all over his crib sheet. Was that blood? Oh, my God. Is that BLOOD? Gabe was lethargic, didn’t look like himself. I called my mom, threw on a pair of boots, and he and I bolted to the Emergency Room.

We walked in the door and I stammered through the complicated explanation with a patient, nodding along nurse. “We think there may have been blood in his crib and he’s heaving and there’s mucus everywhere and he has a neuro-genetic condition it’s like CMT but it’s not CMT but his pulmonary system could someday be affected we just don’t know and so we have to be so careful.” The nurse was exactly how you hope a nurse will be – gentle, swift, understanding, listening, keeping things moving right along. She made me feel not crazy. This is not the point of an ER visit, but it matters. When your inner voices are battling, one telling you that you are paranoid, ridiculous for even coming here, the other telling you that your sons lungs could be failing, having someone agree with you provides an inner ceasefire, if only for a moment.

We saw a doctor, had chest x-rays conducted, discussed Gabriel’s condition overall and his condition that morning and were they related? The conclusion was no, thank you Lord. The doctor was certain that what we saw in Gabriel’s crib was not blood, but that he had vomited something up in the night. I was unsure about his conclusion but it was ultimately confirmed about an hour later when we were back home and the vomiting episodes began (or, continued, I suppose).

It was just a bug. Just a nasty little stomach virus that’s “going around,” as they say, keeping folks down for a few days then leaving, letting us all get on with our lives and Clorox our bathrooms. It’s just that there was the chance that it may not have been, that it could have been so much more. It’s just that these moments, these moments where we don’t know, where that could be a normal childhood temporary illness or it could be a sign of things occurring, things to come, that will impact us forever, it’s just that these moments put our emotions through the wringer, call for so much resolve, require so much decompression.

We really are okay. We are so thankful that it was just a little bug, already a memory. We are so grateful for doctors who were understanding, who did not make me feel paranoid, who listened to my concerns and addressed them. But we, or at least I, am still in a daily battle with thoughts to take captive and what it is to be vigilant enough but not paralyzed by fear and how to receive the “normal” ruckus of life with children yet maintain the possibility that what we are facing in any given moment may be abnormal.

I feel this every time Owen complains of leg pain. “My leg hurts, again!” he will tell me. Growing pains, I’m sure, I think. Or is it? Or are the mutations having their way? Is his body trying to tell us something beyond the fact that he is three-and-a-half, sprouting up like a weed, and runs every chance he gets? So far, it seems that’s the full story. But every day, every time he wakes up in the night with calves aching, I wonder, I fight the wonder, I ask the Lord to hold it for me, because I do not know what to do with it on my own.

We all face uncertainty in so many areas of life. It’s an odd place our family is in, this awareness of how many unknowns we have. Sometimes I would prefer the ignorance. But there is a little part of me, brighter some days, dimmer others, which knows that all of this uncertainty, all of this “what is it?!” of which we are so painfully aware, draws us nearer to the One Who Knows all things, holds all things, the One Who, in Him, all things hold together. I don’t like how much faith all of this requires, most days. I really don’t. But I find that He is here, that the faith springs forth from Him, that even my ability to believe is not contained within my limited strength. So I will keep handing Him the wonder, keep offering up the worry. And He will keep meeting me here.

something different.

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Late last week, the song “I Have Decided to Follow Jesus,” started playing in my head. I don’t know why; I don’t know from where it came. If I knew, I would send it back to its mother.

It was as though the song was on a loop, the sing-along tune repeating over and over and over again. It seemed to begin entirely unprompted, and it hasn’t really gone away yet. But, it’s a little different now.

On Friday, as it played once again, I caught myself changing the words, almost subconsciously, maybe subversively, maybe both.

I’m still deciding if I’m following Jesus.
I’m still deciding if I’m following Jesus.
I’m still deciding if I’m following Jesus.
Will I turn back?
Will I turn back?


Owen spent this past weekend with my sister and her husband. We met halfway between our homes on Friday afternoon and again 48 hours later, agreeing to find each other in the same parking lot the second time as the first. I entered the Chevron’s address into my maps app, but when I glanced at it moments later, it didn’t say Chevron anymore. Instead, it read,

“From: your location
To: something different.”

I laughed at this, took a picture of it. From “your location,” to “something different,” I haven’t been able to stop thinking about that. That is, when the rewritten hymn isn’t looping yet again.


A few years ago, I started seeing a counselor. It was shortly after we moved to College Station and I was so unsure where I fit. We were living with my parents while we built a house. Jared was flourishing in his job. I was battling anxiety, though I wouldn’t have called it that at the time. My heart raced any time I heard Owen cry, flashbacks to months of screaming and colic and feeling so isolated that I wondered if I would ever know myself or anyone else again. And so, for these reasons and many others, I started seeing a counselor. And it helped. It helped so much. She gave me, as my mom says, “a place to put things,” a place where I wasn’t a pastor’s wife and a pastor’s daughter and Abby who writes and Owen’s mom. A place where I could be entirely unsure about who I was. A place to look for myself, to see who I found.


I’m still deciding if I’m following, Jesus.
Will I turn back?
Will I turn back?


From: my location
To: something different.


Because of everything that has gone on in our lives in the last few years, people often follow up the question “how are you?” with an apology, or a “that was a dumb question,” or a “you may not want to answer that.” I appreciate this. I generally smile and say it’s okay, I’m glad they asked. I say that there are at least 7 different answers to that question, that we are grieving but grateful, that Gabe pulled up/cruised/crab-walked this week, that Owen hit his head but has recovered, that Jared is working a lot and praise the Lord that he loves it so much.

“We’re doing okay, Gabe had an appointment last week, his braces are fitting well (or aren’t), he’s sleeping well in them (or isn’t).”

They ask how I am and I answer with we. I’m not really answering the question. This is partially because I don’t want to. This is mostly because I don’t know the answer.


It turns out that “Something Different” is the name of a café in the same parking lot as the meeting place Chevron. It’s a small town Texas restaurant with a sign from the 1970s and a menu unaware that gluten is no longer on trend.

It also turns out that I don’t know what my “something different” is right now, that I can feel a part of my old self breaking off and floating away. It turns out that I don’t know if I want it back or if I’m content to let it drift.


Over the last three years, I’ve continued to go back to counseling on a semi-regular basis. When life started to feel like it was falling apart, when words like “genetics” and “mutation” and “potentially progressive” became a part of my everyday vocabulary, I dropped the “semi-“ and became a full-on counseling regular.

I also started taking anti-depressants.

A little blue pill every morning, a little reminder of my humanity, of brokenness, of how entirely insufficient I am on my own. This is my first time to write about this publicly, to share this part of my story. And I’m going to share more about it for many reasons, one of which is that I have a hunch some of you know waves of grief and depression that run so wild in your soul you’re not sure you’ll breathe again. I have a hunch that some of you know what it feels like to want to sleep more hours than you’re awake, to wonder if those memories of thriving seasons are an illusion, if they ever actually happened. I have a hunch that some of you are part of the sisterhood of the long winter, that the wait for spring has wreaked havoc on your soul.

Depression often comes in waves, unannounced waves, waves of various sizes, waves of tremendous force. Late last week, a wave hit me hard, knocked my feet out from under me. By Monday, I didn’t want to get out of bed. Today, it’s 1:20, and I’m under the covers as I type this, embarrassed that my prayers are a pathetic request for God to cause my children to nap or play quietly long enough for me to feel like I can get through the afternoon. This is my day today. There is no praying my way out of it. There are not enough Bible verses. There are not enough encouraging words.

There is the Spirit within me, God’s people around me. There is the little blue pill. There is the cozy chair in the counselor’s office. There are the words waiting to be said, waiting to be written. There is the discomfort that I do not know what those words are.

There is the fact that I wake up every day and have to decide if I believe God is real.
There is the fact that when depression hits like this, I wonder if I will turn back.
There is the fact that I want to believe.
There is the fact that, today, “help my unbelief,” is a much more honest statement than, “I believe.”


I’m not sure where all of this will lead. I am somewhere along a winding path between my former location and something different and part of me wants to turn back and part of me wants to just lay down on the road or in the nearby woods and stop moving and part of me wants to race ahead to that something different, believing that surely its better than here. I don’t know much of anything right now. But I know I’m going to keep writing about all of it. I know that sisterhood is one of the only things that keeps me breathing on these darker days. I know that it is no coincidence that our Bible study covered Ephesians 2:11-3:13 today – dividing walls abolished, the people of God brought together, leaning against one another, built upon the Cornerstone.

A friend in that Bible study today mentioned that we are quick to talk about grief and suffering when its over, when we feel confident of what that season taught us, when we’re a little more sure of things. She’s so right. And my response to that reality is this declaration: I am sure of so little right now. I am very much within the grief. I am very much within the suffering. I have no idea what I am learning or if learning is even the point. But I’m here, and you’re here, and He’s here. And if what Scripture says is true, then the fact that I’m here and you’re here and He’s here is a really joyous thing. That’s what I’ll be pressing into in the days to come, both within my soul and within this writing space. And you are so tenderly, openly, hopefully invited to join me.

when life is a whirlwind & He sympathizes with my weaknesses.

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A few days ago, I stood at the sink in our kitchen, washing my hands, thinking. I looked up at the liturgical calendar I keep on the bar, the one nestled between pictures of the little boys, behind the holy day candle. The calendar stands there to remind me of the seasons, to anchor me in time.

Each page of the calendar tells me of a season based on the life of Christ. Right now, of course, it says “Lent.” Alongside the name of the season, various themes are displayed. And as I looked up from the trickling faucet, glanced away from my dripping hands, one theme caught my eye: disruption.

I felt the prick in my spirit immediately, recognized the inner knowing nod, the familiar frustration. In the last 8 days, Gabriel got sick, then got better just in time to go to Shriners. Twice. Then Jared got sick. Gabriel is now clingy and cautious, sore knees that haven’t directly touched the floor in weeks and uncertainty about what will happen when people touch him, what is coming next if I release him from my arms. Owen is feeling the chaos, trying to sort it out, asking me if Gabe has another “ma-ppointment,” if he has a babysitter coming.

This morning, I have called at least 6 different phone numbers trying to get a medical paperwork question answered to no avail. Both kids want my engagement at every level, want to climb on me and lay on me and are unimpressed by me attempts to engage them in independent activities. Right now, they are decorating a laundry basket with pipe cleaners and ribbon, and I suspect this will last for about 42 seconds. Actually, I overestimated. Gabriel is now 10 inches away from me pulling the cleaning supplies out from the cabinet (we’re big time “safety first” people around here, clearly) and Owen is yelling for me help him decorate his “rocket ship,” because “this is hard work.”

Gabriel has learned how to say “mommy” recently, which I treasure, storing up the gentle, excited sing-song of his voice.  But sometimes, his call makes me wonder how mommy-ish I really am; it makes me wonder if I have the tenderness these littles need. It makes me wonder why I feel like I’m one of the “mom” mothers, not the “mommy” mothers. It makes me wonder what it means when people observe that I don’t talk to my kids “like they’re kids.” It makes me wonder if I’ll be better at this when they’re teenagers.

I keep thinking about that word, disruption, about how just because our life has a high level of intensity, that doesn’t mean the little nuisances of everyday life won’t still happen. It all happens. The big and the small happen all at once, or they alternate, or they go quiet simultaneously or they get loud together and life is either a season of disruption or a season of waiting for it, of training my heart not to fear the future, not to assume that frustration is coming, but doesn’t it seem like it inevitably does?

Disruption in the context of Lent grips me hard and forces me to a lower places than I’m naturally prone to go. It transports me to the reality of the disruption of Jesus, of His perfect, earthly existence, of His sudden confinement to a body of a flesh, of endless worship turned to fatal scorn. He was not acknowledged for who He was, was not beheld, was not treasured or recognized. He was disrupted at the deepest level, disrupted unto death.

And the thing is, I don’t think that the Spirit is calling the death of Jesus to my mind in order to shame me. I don’t think He’s minimizing my disruption or negating it. I think that He is calling me to mirror Jesus in His acceptance, to acknowledge the pain and the imperfection and the wishing it could be another way and to keep going, to press in, to be willing to endure disruption, confident of the promises to come.

When I question my motherhood, when I think someone else could do this better than I could, when I see my limitations and weaknesses staring back at me in the form of two tiny faces, I think of disruption, of how to lean into it and not away from it, of how thankful I am that Jesus did not cling to that which was rightfully His. I am asking the Spirit to remind me of how unconcerning it actually is if I feel like a “mommy” mother or a “mom” mother, because I am the mother who is here, the mother who loves and prays and brings alongside, the mother God appointed for the boys He gave us. I think of how He is the One who decided that an introverted, thinking over feeling, writing over crafting woman would be the nurturer of these little souls, would be the mother who tries to live a life where experienced disruption is not equivalent to internalized depression so that her children can engage a broken world with strength, with the expectation of pain and the endurance to bear it.

Disruption is not my ideal, but it is not eternal either. And the Jesus Who faced ultimate disruption is eternal, so while I wait for the paperwork phone call and for Daddy to come home and for Gabriel’s anxious heart to calm, I’ll think of Him, how He knows more of disruption than I ever will. And maybe by the end of the day I’ll know Him, I’ll trust Him, just a tiny bit more.


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a farewell, a moving forward.

Gabriel’s casts came off today, the ones with the holes over the knees that gave glimpses of his skin, the ones that rendered more than one pair of pants threadbare. Farewell, old friends.
They came off about an hour and a half ago, and now we are waiting to see the orthotics specialist, to see if the braces that were molded for him during surgery fit correctly, to see if our next transition phase can begin. The receptionist assured me that we are still deep in the queue, encouraged me to go get a coffee while Jared waits with Gabriel. So that’s what I’m doing, 2 1/2 hours into the appointment that has no end in sight. I’m writing this in the Starbucks line, in the parking garage, on the walk to the elevator.

God and I have the same conversation on many of these days, these days consumed with the drive and the waiting rooms anew the clinic tables. I tell Him how hard it is for me to believe that this is the best use of our time, all of this waiting, all of this discomfort for my son, all of these next steps that are not really solutions.

And He doesn’t really say anything back.

I do not take this to mean that He is angry or ignoring me. Strangely, I interpret it in just the opposite manner, which is how I am able to say that this is a conversation I’m having with Him, that it is not merely a litany of my complaints. I take His silence to mean that He is telling me just to be here, telling me that He is with me and with Gabriel, telling me to remember and believe that which I already know: His goodness. His relentless goodness that I do not understand but oh, how I long to. I want to understand His goodness in the room where the feet do not move and in the room where my friend’s baby is no more and in the rooms where friendships fall apart and marriages crumble and war and famine and hatred run rampant.

I understand His goodness factually and I understand it experientially at times, even today. I understand it when I see Gabriel’s legs kick free, when he touches his calves hidden month-long beneath plaster, when he smiles at the sensation of his tiny fingers grazing his unwrapped skin. I understand that goodness and pain can sit in the same space; I think of this when it ponder Jesus on the cross, searing loss leading many sons to glory. So maybe what I mean when I say I want to understand His goodness is that I want to experience it all of the time, that I want every enemy of the good to be eradicated, that I want this now. I don’t want to long for the kingdom anymore; I just want to see it come. But in the meantime, in all this waiting,  whether it be behind the dashboard or behind the clinic doors or anywhere else, I ask Him to lead me on in my journey of learning to wait with hope, to give me the faith to expect him, to give me the tenacity to accept the pain of the world but not be crushed beneath it. I’m back with Jared and Gabriel now, we are waiting on the final orthotics fitting, waiting on the specialists so faithfully committed to making sure the fit is perfect, that his foot can breathe as it sits inside the plastic 23 hours a day. We had a taste of goodness just now as we learned that Gabriel does not have to wear his bar anymore, that his doctor does not see the benefit of it any longer with what we know of Gabriel’s condition. This is an intertwined goodness of course, reminding me of Micha Boyett’s recent words, on the braid of grief and love in the life of a mother with a child with special needs. If Gabriel were facing a typical clubfoot prognosis, then these would be the days of sleeping with the bar. But he’s not, and while what we are facing is largely unknown, the problems that the bar would prevent are not the problems that are specific to Gabriel.

So we’re choosing to rejoice today, even as we grieve, even as we take steps on a road we would not have chosen. God tells us He is good. He tells us this in His silence, tells us this in His shouting, and we walk toward the surety of Him, toward the fullness of Him we will one day know.

It’s 4:30 now; I’m standing in line to schedule Gabriel’s next appointments, which stand like mile markers on this road unknown. After this, we will go home to Owen, to the day to day that is really not very day to day feeling at all, in ways hard and ways wonderful. And He will be good in each second of it, and we will carry on. 

a name for the color.

I am staring at a bridal portrait of myself – twenty years old, hair and skin made perfect, white dress, sparkling eyes. There is a wedding picture in the next frame. Jared is kissing me on the cheek, boyish hair grazing my temple. These pictures flood my heart with nostalgia, with sentiment. In the same breath, they grip me hard, leave my system a bit shocked. It has been almost eight years since we took those pictures, made those vows. How can so much have happened in so little time? When I think about everything those glowing faces do not know, cannot know about what it is to come, it takes my breath away.


Nine days ago, last Tuesday, Gabriel went into surgery early in the morning. We have shared many of the details of what occurred, what we know, how he’s doing. There is a lot we have not shared, not thoroughly.

Sometimes, there are too many threads in this tapestry of our lives. Sometimes the awareness of how many stories we are living makes my soul bone tired, forces me to choose just one to tell, for now. We can come back to the other later, I tell myself.

Sometimes, it’s just too hard to tell two stories at once when I’m still living them both.


 

“Was Gabriel’s surgery successful?”

That is the common question, the expected inquiry. Medical procedures can so often be adequately assessed in this way – successful or unsuccessful, perhaps neutral. Gabriel does not tend toward the “so often” path.

Gabriel’s Achilles tendons were severed, legs casted in hopes that the tendons will heal properly, lengthened. He handled anesthesia well, and his pain was manageable with rare exceptions, quickly solved. He has slept and crawled well, and he does not express irritation about the casts. For this, we are grateful beyond measure. We are confident of God’s goodness in this, of His pleasure in answering the prayers of saints who asked Him to provide comfort and joy.

During the surgery, Gabriel’s orthopedist, Dr. Stephenson, hoped to conduct nerve and muscle biopsies, which would provide her with more information about the behavior of Gabriel’s body on the cellular level. She could not get the biopsies, because the muscles and the nerves are not there.

Full stop. That which should be there, inside every body, every leg, every foot, is simply not there.

This is not a small thing, and it is magnified by the fact that there was extra, useless tissue inside Gabriel’s feet and ankles, yet another sign that the instructions given by his genetic code since conception are faulty. Parallel to our confidence in God’s kindness toward us in the past nine days is our confidence that God was there was Gabriel was created, when his genes were formed. We are sure that He was there, and that He did not intervene when mutations occurred.


“It’s like Gabriel is within the spectrum of the color red,” Dr. Stephenson said just after the surgery, “but he’s not quite fuchsia, not quite fire engine. His red doesn’t have a name yet. So, that’s what we’re doing. We’re looking for a name for the color.”


These are not the days of ups and downs; these are the days of intertwine. These are the days of celebration as Gabriel balances on his knees and claps for himself, as he chases his brother around the house. These are the days of a pricked heart when social media reminds me that babies far younger than Gabriel are pulling up, standing, walking. These are the days of pillows under casted legs, the satisfaction and relief of helping a baby too young to speak his needs find comfort. These are the days of thinking back on the moments after the surgery, the moments of no name for the color, and wondering if it will always feel like this, so nebulous, so unsure.

There was another phrase the doctor used while we sat in that room, just before I was whisked away into the recovery area to await a sedated Gabriel’s awakening.

“I think we know at this point that whatever we are looking at is very likely to be progressive.”

“Very likely.” These are new words. Before, it has been “possibly,” it has been “this is similar to CMT, and CMT can progress.” It has not been “very likely” to us until the past nine days.

Before anyone comments with, “it isn’t new to God” or “don’t let those words limit God’s power,” let me just save you some time. We know. We really do know. We are not shaken, nor uncertain of God’s ability. We are in no way less convinced of His power than we were before “very likely” pierced the air. But we are grieving. We have been grieving for a long season, and there is not time to heal, because the news refuses to cease in its onslaught. This surgery confirmed all the more that we are not simply looking at a correction of anatomy, but a DNA-level malfunction from conception.

And He did not intervene.


I used to be one of those people who saw God’s goodness so clearly, even in the midst of pain. It’s harder to see it now, to point it out and claim it with confidence. It is like I’m holding my hand in front of my face, certain that it’s there, but the room is dark, so I can’t actually see it. It has to be there, right? I know it’s there. Sometimes I can almost feel the warmth of its closeness. But I cannot see it.

People approach me often, families at church, friends of friends online. They tell me that our story gives them confidence in Jesus, that we are a picture of suffering well. I say, “thank you, God has been good to us,” because I do not know what else to say, because this is an opportunity to preach to myself. Maybe that is what I am really thanking them for.


We do not know what progressive means, and no one can tell us. There are stories of sibling groups, three out of five sisters with a CMT diagnosis: one still walks, one does not, one won’t by the end of high school. There is the story of our family, a mom and two sons with identical mutations, the two sons both carrying an additional mutation from their dad. Yet one is born into the world and requires no intervention, no months of casts, no surgeries, no trips to Houston where I enter into the hospital and am quite certain by the time I exit that I am no longer her, and who am I now?

These are the days of intertwine. They are the days of no name for the color, of spectrum, of gratitude and grieving.

“We will know more about this as Gabriel shows us,” Dr. Stephenson said.

What this means is, if he is going to walk, we will know when he starts to walk. And, if that occurs, then we will know if walking will be taken from him if one day he wakes up and his legs do not move. We will know if he will lose sensation if he expresses tingling or numbness. We will not know because a test tells us what is coming, because a vial or monitor holds the answer. One day, something will be different. And then we will know.


I cleaned out a bookcase yesterday. I took a volume called, “Let Go and Let God” and put it in the “to sell” pile. Maybe you would rather not know that.


 

I do not know what it is to embrace the goodness of God in this moment, what it is to rely on Him. So I wake up in the morning, and I turn on songs that offer me better words, words of Scripture and words of the people of God Who have been in this middle place of surety and uncertainty all at once far longer than me. On Holy Days, I light a white candle, I think on the themes of the season. I ask God how I can know Him more in all of this. I ask myself if I actually want to know Him more, if I think He is the type of God I want to know. Something in my soul keeps saying yes, and, perhaps because I do not know what else to do, I say “okay,” and I keep talking to Him, keep asking Him what He is doing and Who He is. I keep reading the Daily Office, even when the passages are about Jesus healing sons, even when I want to slam the gospels shut because their power still lives and my child is still half wrapped in plaster.


I do not think God owes me any answers, about His plan, about what is going inside Gabriel’s body, about why He allowed any of this to happen. I do not think I would like any of the answers He could offer me, nor find them satisfactory. I think that the only answers with the power to provide any comfort are the words telling me Who He is. So those are the questions I’m asking. Those are the answers I repeat to myself, singing to Gabriel in the rocking chair, a made up tune, “Our God is kind, our God is kind, our God is kind.” I sing it over and over and over again. I ask God to convince me of it as I rock, as Gabriel’s casts scrape my arm. There is so little else I know how to do right now, so I am doing this.

There is no name for the color, but there is the white of the Holy Day candle. There is no name for the color, but there is the blue of the plaster casts draped across me as I sing the truth over us.There is no name for the color, but there is the name the Lord gave us for our son, “Gabriel, God is my strength.” There is no name for the color, but there is the name of Jesus, tumbling out of my mouth in a breath, a prayer all its own, because I have no other words.

This is what there is; this is where I am. And He tells me that He is above, before, within, over it all. So I keep talking to Him, keep singing and lighting the candles. I wipe off the blue casts and check for swollen toes. I ask Him to be near, and He says He will be. And it will be enough.

 

 

 

 

 

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.”

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.

when I am longing and thankful. 

Last year, Thanksgiving Day, Gabriel was in the middle of serial casting. I was battling severe anxiety over his upcoming surgery, fear that gripped my heart and soul in a way I had never experienced. I was driving to Shriner’s weekly, rattled by the repetition, four terrible nights of sleep while he adjusted, three more normal, new casts, repeat. Gabriel’s feet were not moving independently, no reflexes present. I was concerned, but believing, so confident that the Lord was near to him, near to me.

I was so hopeful that next year, today, would look so different, feel so different.

My heart hoped, believed, surely, it told me, surely by then we will be in a phase of receiving information about Gabriel that is positive, normative, progressive in the way of moving feet and checking off milestones, not in the way of degeneration, in the way of Gabriel himself progressing, rather than his condition threatening to progress.

It is startling how little has changed.

I am once again anticipating Gabriel’s surgery. I am battling fear of anesthesia, struggling with anger over inconsistent nights of sleep as he changes from casts to braces to pressure sores to braces to casts again after surgery. I am tired. I am driving so much. I am staring at little feet and begging them to move; they do not respond. I am unsure of the future. I am waiting. I am sad. I am still in shock, really, in many ways.

And yet, also like last year, I find these feelings, these temptations and challenges and repetitive shocks to my system not to be exclusive of gratitude, they are not at odds with one another, and I’m not sure that is something that can be described, though I’ve sat here at this keyboard to try my best.

I am still longing for another way, take this cup, Father, won’t you?, but I do not think another way is coming, and I do not think that renders me faithless. I appeal to Him continually, like a lawyer in a courtroom, reviewing definitions, reminding Him of the way He has revealed Himself, of the rhythm He has set into the world. You are good, remember? You give your children good gifts? They ask for bread and you do not give stones. You are loving. You are kind. You are not far off, but where are You? You are able, but You are not giving ability. You are Healer, but You are not healing. You are Restorer, but You are not restoring.

You are not Who I thought You were.



That’s really the truth of the matter, truth so raw and resonant within me that it echoes, deafening. He’s not Who I thought He was. I never would have said He was predictable, but I thought He was. I never would have said He owed me blessings, but I thought He did. I never would have said He was contained, limited, bound in His responses to my obedience or lack thereof, my faith or absence of it, but I thought He was. Deep, subconscious, underlying, warring with the grace I held so dear, I was so very used to my own goodness, my own obedience and proclivity toward righteousness, a penchant Pharisaical far more often than I would like to admit, a norm so engrained that I believed it was a tool I could wield, a bargaining chip. This was in a way all subconscious, occasionally surfacing only to be suppressed, dismissed as a random thought, inconsistent with my “real” way of thinking, though it wasn’t.

This is, perhaps, the most bizarre Thanksgiving post one could write (though last year’s was not exactly traditional either). And it feels very unfinished, perhaps just the beginning of something, of patterns to be explored, of the reasons why I could be so rocked by all of this yet still believe, the reasons why I must admit now that I doubt very deeply, that I do not understand God in the way I once thought I did, but I still cling to Him, I still love Him, I still trust that He is good and that He will bring my heart along to an understanding of goodness that is deeper, richer, sweeter still.

I am certain that the categories I have had for Him will no longer suffice, they are a boat overpowered by crushing waves, drowning, and I tread water, watching it sink below the angry tide, wondering if I will too. But a piece of wood drifts by and I hold on, or maybe it holds me, and I’m waiting for the new boat to come. I haven’t seen it before, I don’t know what it looks like, I don’t know if I will ever have freedom from the longing for the old boat nagging at my heart, for the comforts of what I thought would be, the old definitions, the old ways of doing things, of thinking, of planning, of dreaming for my child. I don’t know how it is that I am even sure that a new boat is coming, but I am. And if there is anything at all that I am sure of, it is my need for it, it is my desperation for a solid deck on which to plant my feet, or maybe, more accurately, a cabin down below in which to lay, a ship that will not capsize under the wind and waves and storms unrelenting, the tumultuous waters that toss and soak and threaten to defeat.

So today, most simply, most shakily yet most fervently, I am thankful that a new boat is coming, that He gives me the faith to keep looking for its silhouette on the horizon. I am thankful that my heart does not cling to the hope of calm waters or a Captain who obeys my whims or manipulations, responsive to my paltry offerings of obedience, my filthy rags. I am thankful that the water has begun to wear some of the jagged edges off my soul, unearthing humility and questioning often stifled, silenced in the name of faith and obedience that has too often been whitewashed rather than purified.

The boat really has nothing at all to do with the Lord’s presence or lack of it, His goodness now or when the boat welcomes me inside. I think the boat is just a way for me to understand and take heart, it’s a way to feebly attempt to declare that I am not satisfied with how I see Him now, that I will not stand for continuing to be limited by my own small view of Him, my confusion over terms or despair over that which does not make sense. I will trust Him that someday I will see these waters differently. I will be so much more sure of Him than I am of their threats to sink me down, down, down. I will be thankful when the days of stronger faith come, and today, I will be thankful that I long for those days, that He holds my heart so tenderly and strongly, that He is giving me the desire of my heart that I voice to Him most often – I want to want You. Perhaps, if only in that obscure way, I am seeing just a bit more clearly what it means that He is good.

Let there be much Thanksgiving.

a life of waiting. 

Our life with Gabriel is a life of waiting.
Gabriel was supposed to have surgery tomorrow, but he had a fever Tuesday night-Friday and he still has a cough. His doctors are uncomfortable performing the surgery for at least 6 weeks after sickness, so we are waiting until January in order to allow for that time and celebrate the holidays. In these interim days, we will see how he does out of casts and in braces. If he does well, they may delay surgery even more. It’s another song in the lifelong dance of figuring out what is best for him.

Our life with Gabriel is a life of waiting. Because his condition is possibly, at times the indication is probably, degenerative, we don’t know which systems are or could be affected. Someday, Gabe could lose more motor neuron function. He could no longer have certain sensations, or we could find a bodily system in decline. There’s so little we know at this point. So, we have to make decisions about surgeries, anesthesia, medications, so many things, recognizing that Gabe could have a weaker or, someday, a declining respiratory system.

Our life with Gabriel is a life of waiting.

We are somewhat overwhelmed, but we are so very thankful for vigilant, thoughtful doctors. Many, in their kindness, their desire to understand, have asked how we feel. In a way, Eeyore-esque as it may sound, nothing feels different. Our life with Gabriel is a life of waiting. This may be a different waiting, but it’s all just waiting, it’s all just a continual reminder that we are not in control, that sovereignty isn’t safety, that protection isn’t insulation.

Our life with Gabriel is a life of waiting. All of life is a life of waiting. Our souls wait for the Lord and our minds wait for His wisdom and our ears wait for His voice, hearts wait for His comfort, spirits wait for His guidance.

Our life with Gabriel is a life of waiting, but our world before he entered it was filled with waiting too. Life with Jesus is a life of waiting. We wait for growth, we wait for renewal, we wait for Him to say, “enough!” and come rescue us. So I’m looking to Gabriel like an altar right now, like a memorial stone with me every day, reminding me that the waiting has always been here, will always be here, pulsating inside me, before Jesus returns. And perhaps we are some of the most fortunate ones, the ones with this blatant, visible reminder of the hope to come, of longing unfulfilled but not forever.

A life of waiting.

Come, Lord Jesus.