The Significance of the Unknown.
Owen is three. Tall, lanky, talkative, he bolts out of our back door before I can remind him to put on his shoes. There are balls to throw and games to invent; footwear clearly does not measure up in importance.
Gabriel is 16 months old. Cheerful, funny, along for the ride, I can hear him gunning for the door as well, following his brother as fast as he can. I can hear him from the other side of the house, if my back is turned, if music is playing. I can hear him because his legs are covered, toes to just below his hips, in casts. I can hear him because he is still crawling on all fours though his first birthday has long passed. The cadence of his plaster-wrapped knees thudding against the floor is the drumbeat of our days.
Gabriel has a neuro-genetic disorder. The genetic mutations he possesses are called "variants of unknown significance." All we know for sure is that Gabriel will need to wear braces on his feet every day, always, and that his feet and toes do not move. Beyond that, we wait for his body to tell us just how significant these variants are. He could start to walk then one day no longer be able to do so. He could wake up one day unable to feel his feet. We don’t know.
"Unknown significance," indeed.
Here is what I do know: there have already been so many days, when I start to see the variants manifesting right in front of me, when their undeniable significance steals my breath. Bearing the weight of one child who has special needs and one who does not is at times insufferable.
An image comes to mind often. It's five or ten years into the future; Owen is stepping up to bat at a baseball game. Gabriel and I sit in the stands.
We sit in the stands.
He sits in the stands.
I step onto the porch; the kids are in the yard. Owen barefoot, Gabriel shrouded. Someday, Gabriel will understand this. He will realize that his feet are continually covered while his brother's feel the air, touch the grass. Gabriel will watch Owen run and see the way his feet move up and down, the way his bare toes grip the ground, and he will look down at his own feet wrapped in the plastic of braces or the plaster of casts and be reminded that his do not do the same and that we don't know why. He will be reminded, as if he could ever forget, that his mobility is limited, that the variants that have made themselves known so far seem quite significant, and isn't it hard to believe that those that are next to reveal themselves won't follow suit?
The variants in the genes may be unknown in their significance but the variants in our lives are becoming undeniably significant. The tension rises in my soul as the gap between Gabriel's capabilities and the capabilities of others becomes more evident, as every time I log on to social media I see that a baby who is younger than Gabriel is walking, as every time we enter church I’m blinded by the darling pairs of miniature shoes on tiny, functioning feet.
Perhaps the greatest tension I feel, though, is the one that threatens to choke me when the boys bolt for the door, when Owen's feet slap the porch and Gabe's padded knees scrape the ground. This moment, which happens almost every day, is a reckoning. It's the moment when I decide if I will tell Owen to come back inside and put his shoes on, not because I care that he wears shoes, but because Gabriel will never have the choice to wear shoes or not, and the disparity guts me. But so does the thought of asking Owen to modify his habits because of a someday realization, one I can't even explain. So far, I've just let him be.
Gabriel does not know his limitations yet. How will we keep walking forward when he does? There, that's the perfect example; I said, "walking." That's a metaphor; we use it all the time. But Gabriel may never walk, at least not unassisted, and now anytime I hear the words "stand" or "walk" or "run,” it takes everything within me not to fall into the hole of what could be.
I think about this so much, the special tension of one sibling with symptoms and one without them. I think about how quick I am to focus on Gabriel's needs, yet how desperately I want to guarantee Owen the freedoms of childhood that I long for him to experience - barefoot days, sports, muddy toes. I think about how Gabriel may not get to experience any of those things, yet how irrational it is to keep Owen from them, and how much all of this makes me want to run away.
The fear that Gabriel will be the one who has to sit in the stands, that he may want to be on the field but will not have the functionality to play the sport is stifling. This has nothing at all to do with sports. I would just as soon take a get-out-of-jail-free card relieving me of the obligation to sit under the belligerent Texas sun on metal bleachers waiting for the thirty seconds during which I'll get to cheer on my child.
Any get-out-of-jail-free card, that is, but this one.
This one feels like the trick play, the "be careful what you wish for" card; the one that renders me free but takes my son captive. I don't want this card; I want the deck to be reshuffled and the hand dealt again. But there is no reshuffling, no new hand that renders Owen and Gabriel uninterested in athletics, nor Gabriel's feet healed. There is simply the reality that, just as every family does, we will face difficult conversations. We will hold the hands of two boys in the tension, look into their deep blue eyes and say, "this is just so hard, and we can't fix it."
We will teach Owen to do what he loves and to cultivate empathy all the while. We will encourage Gabriel to see the vast, gracious spaces filled with what he can do and to grieve with hope and honesty over what he cannot. We will tell the truth, that our hearts hurt too, that we wish it was another way, and that the guilt and frustration and disappointment and anger prompted by disability are real and valid and that God sees.
This will not fix everything, but perhaps it will help us build a set of stands all our own, a place for us to sit together. And perhaps the story that plays out before us, painful and confusing as it may be, will contain goodness sweeter than the bitterness of disability. Something about the two boys in the backyard, and about the God who knit them together, helps me believe that this will be true.
Guest post written by Abby Perry. Abby is an old soul, a Jesus girl, better in writing. She is a pastor's wife and mom of two boys, one of whom has a neuro-genetic disorder, which Abby writes about (among other things such as faith, liturgy, depression, social issues, and literature) at www.joywovendeep.com. Abby directs communications for a nonprofit organization and co-facilitates two community efforts - one promoting bridge-building racial reconciliation conversations, the other supporting area foster and adoptive families. She has a soft spot for books, podcasts, learning about human relationships through television and movies, personality typing, and pasta. Abby holds a B.A in Communication from Texas A&M University and is completing her graduate degree at Dallas Theological Seminary. You can find her on Instagram, Twitter, and Facebook.
Photo by Dustin Williams.