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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Author: Abby Perry

Abby Perry is an old soul, a Jesus girl, better in writing. She's a wife to Jared and mother to Owen and Gabriel. Words strung together is her attempt at making sense of the world. In 2016, she is blogging her way through her first full year of observing the Christian/liturgical calendar. She also writes on her family's journey amidst the realities of Gabriel's neuro-genetic disorder, listening to the Spirit in the midst of suffering, and the questions ever present in her mind.

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