Ankle-foot orthotics are my nemesis. Day after day, I search the floor to find them (why must they come in twos) and loosen their Velcro straps. I adjust my daughter’s socks and stretch her pointed feet and tight tendons into the prescribed angle. Re-thread the Velcro, and tighten. Like a horse holding its breath for a looser saddle, my daughter points her toes and curls her arches to keep her heels from their plastic cradle, and we must adjust the straps again. Then we find and put on her shoes, a challenging task with a braced foot. Next the wheelchair harness, brushing her hair, her teeth, putting on her coat and gloves. My daughter is eight and there’s no reason to think she will gain the ability to do these things for herself, so every morning (except some lazy, bed-cocooned Saturdays) we perform our dual struggle, in which her short tendons are stretched, and my selfish will is bent.

Details are not my strong suit. Neither is repetition, nor tedium. Indeed, if we are being honest, I struggle with most activities not of my choosing. In those I do choose, I have always looked for the visible result, the measurable success. Work without progress, repetitive maintenance, preventative care – all these are things from which my temperament shies away. Orthotics fall into this category. I am equally bad (perhaps worse) at flossing.

When I became a mother, I was a productivity-focused graduate student who used her busyness to ignore a fundamental truth: life is, in its basic nature, unpredictable. So is the experience of bearing it. Looking back on my younger self, I see a woman who thought all things would be resolved and squared away, who believed she could preserve her family from unexpected events by strength of her personality, and who considered raising children with disabilities to be a challenging, life-limiting experience that happened to other – albeit very admirable – people.

“The body does not consist of one part, but of many.”

When Paul wrote to the Corinthians, he wrote about bodies. The church, he said, is the body of Christ, and like any body it is made up of a diversity of parts, each with its own abilities. Thus, he told the members of the church that they should each work in their proper role and relation, supporting and celebrating one another in turn as a united whole. “If one member suffers, all suffer together; if one member is honored, all rejoice together.”

My daughter’s life has not proceeded as harmoniously as it does for the bodies in Paul’s model. A metabolic disorder in the cells of her brain and a lifetime of seizures mean that her ears and hands do the work of eyes; she can giggle, shriek, and scream, but not speak. Her legs do not bear her weight, and she cannot sit or stand unsupported.

It is not all can’ts. She loves music, with favorites that range from Vivaldi and Mozart to ska. She has a wicked sense of humor, and chortles to herself when amused – often at others’ misfortune, a mortifying experience for her parents. She goes to school, where she is in a standard classroom with an aide. Her classmates adore her and push her wheelchair, pretending she is a princess in a carriage. To her preschool brother, she’s a convenient racecar. The thumps and bumps of riding in her accessible school bus are hilarious. She is at her most alert and engaged when taken for walks in the woods, and lifts her face to the breeze. She loves to be nuzzled by dogs, and they usually adore her back. But the truth is that for as long as she lives, hers is a life that depends entirely on the care of others.

This is a reality that makes many uncomfortable. Everyone who meets my daughter delights in her. Nevertheless, in unguarded moments I’ve heard friends and loved ones speak of caretaking and dependence in ways that – taken at their face value – undercut both my daughter’s life, and the work my husband and I do to care for her. “I don’t want to spend my years caretaking.” On the other side of the coin, “I don’t want to be a burden.”

These are people’s private wishes; nobody has yet told me I can’t or shouldn’t care for my child, or that she is an undue burden on others. However, it’s striking that the people who have these views do not see the connection between my daughter’s life, however unusual, and their own. Fundamentally, where they err is the presumption of choice. The life my family lives was not a choice. It is true that my husband and I would not have ended a pregnancy if there were signs of disability in utero, but there was no evidence of my daughter’s condition until she was hospitalized and intubated as a fragile newborn. There are no tests for genetic errors found, as far as we know, in only one girl in the world. When she came home from the hospital (an event that was not always a foregone conclusion), my husband and I were thrust into the world of parenting a child with high medical needs – a role for which I, at least, have always felt underprepared in both training and personality. One does not learn about seizures and feeding tubes while pursuing a doctorate in medieval studies.

These are the things I have learned in eight years of medical parenting: how to draw up medications for a newborn, including medications so potent they are held behind locked doors. How to place a nasal-gastro feeding tube, how to change the port for a gastral feeding tube, and how to work two models of feeding pumps. How to research a wheelchair. How to place a child in a standing frame. Varieties of nutritional formula. How to identify and describe seizures. How to administer midazolam as a rescue medication. That cortical vision impairment is the result of damage to the brain, not the eyes, and how to support the use of vision in those diagnosed with it. The existence of neuro-ophthalmologists. That the vibration of an electric toothbrush held to the back will comfort a child crying with post-seizure discomfort. How to clean formula spills, vomit, and other fluids off a wheelchair and off a rug. That the first step in teaching alternative communication is to teach cause and effect with buttons and toys. The workings of eye-gaze communication software. Most of all, how to be patient. The greatest compliment therapists give me is when they say I am good at waiting.

I also have learned things about myself, not all of them flattering. There was a horrible moment in the ER when they took away my newborn, when my fear and grief made me want to run away – from the child, from the challenge, from the risk of loss. In the dim rooms of the NICU it turned to unconditional, jealous love for this sweet girl who was so precariously ours.

And, at last, I have learned in real time that illness, disability, and caretaking can come like a bolt from the blue at any stage of life. What matters is how we as individuals, and as the body of Christ, respond.

“If the foot should say, ‘Because I am not a hand, I do not belong to the body,’ that would not make it any less a part of the body. And if the ear should say, ‘Because I am not an eye, I do not belong to the body,’ that would not make it any less a part of the body.”

When he writes of the church as a body, Paul presents a model of radical dependency within the community of the faithful that becomes in turn a model of dependence on God. When I think on these verses, my daughter becomes for me a sign, a model for how I must be in my soul: reliant upon God, immersed in the Spirit that works in the body of Christ, weakened and impotent when I try to rely only on my own gifts and abilities, and with a duty to serve others in my community. Perhaps this is a reason Christ’s teaching has us look always to the poorest and least among us: because our care for them shows our willingness to become small, humble, and Christlike. Nobody wants to imitate those whom they ignore or despise.

The challenge of dependency in a world that values strength and independence affects far more than our individual choices. In the highly networked, complex economic and political structures of our day, we are faced at every turn with questions of how we are to support those who need assistance. I live in Canada, where we hear stories of disabled adults requesting medical assistance in dying not because their natural death approaches due to the course of some disease, but simply because their lives have become such a struggle in the absence of adequate support. Christians should see this as a fundamental failure in our culture to meet our duty to support not only the disabled but every member of society. None of us comes through life as truly independent; we are all only temporarily – if ever – in the full strength of our bodies.

As much as we try to control our lives and protect ourselves from suffering, to become a parent is fundamentally a radical act of hospitality, a promise to welcome and care for a tiny stranger who comes along, whoever he or she may be. We know there will be joy; we are not promised an absence of grief. We are lucky that medical advances have reduced dangers to young children, and parents are now supported in caring for those who need more intensive care rather than being pressured to institutionalize them. Even so, a lifetime of caretaking is just one of the possibilities opened in parenting; we are all a genetic typo or two away from a metabolic disorder that injures the brain. And a world in which someone asks if my daughter is a burden, however life-changing her disease has been for all of us, is a world on a dark path.

Elsewhere in his letters, Paul addresses how Christians must be in the world, how to show the light of Christ in a way that draws new believers to the gospel. Studying his words still keeps exegetes busy, balancing the ways in which early Christians did their best to fit societal demands while still challenging ancient mores. Perhaps in our era we may see our belief in spiritual interdependence as a model for serving a world that is afraid of fragility. To embrace our need for one another within the church community is to hold a challenging mirror to a world that shies away from weakness and dependence. To welcome those who need support and assistance is a witness to Christ for which our world is starving. On the other hand, when we see ourselves as the body of Christ, we will not despise those whose gifts and needs are different from our own – that no matter the care they require from us, they also bring gifts without which we cannot be whole.

When my daughter’s needs first became clear, I thought of her future life as an unending sabbath, a proof that man is made to rest in God’s goodness without focus on high achievement or completed checklists. It hasn’t quite worked that way; her life is laborious in many ways. And yet, her life is good. Her value, dignity, and goodness lie not in her strength or abilities, but in her existence as a beloved creation of God, and it is because she exists that we, and our community, love her. We love her no less for the care she needs or the things she cannot do. Though she depends on us and is no economic force or great player in the world, our love for her says over and over, in the words of the Thomist philosopher Josef Pieper, “It is good that you exist.” She reflects that love outward in her delight in existence, her spirit, and her participation in the body of Christ.

In Sit, Walk, Stand, a study of Ephesians, Watchman Nee writes that while God may have rested only after his six days of creative labor, Adam – the culmination of those labors – was created directly into the Sabbath. In this rest, we find our true nature in the body of Christ, the strength to care for one another, and freedom from fear of being – or bearing – a burden, because we know we are one member in a unified body.

This past Holy Week, our pastor asked if he could wash our daughter’s feet during the Maundy Thursday service. We sat at the front, and after the readings my husband pushed her wheelchair to the line of chairs that faced the congregation. He took off her shoes, took off her orthotics, took off her socks – all of which I had, as usual, resented while ushering my family out the door – and then our priest knelt down to greet her. Because she cannot see, he talked her through every step as he watched and dried her feet. On the day we remember Christ’s gift of himself and his command to follow suit, I watched my daily struggle fill with grace. In that evening service, ankle-foot orthotics were part of the imitation of Christ, the model of complete self-giving upon whom we all – no matter our abilities – entirely depend.