How Having a Disabled Child Has Made Me Closer to Jesus

If you’ve ever read the Gospels, you will probably agree that Jesus is one confusing dude.

(If you disagree, and think his message is actually quite simple . . . then you and I must not be reading the same book.)

The guy speaks in riddles, answers questions with questions, and tells bizarre parables. At times he seems to contradict himself, the Old Testament, and other authors of the New Testament. You can read the same words twelve times over twelve years and get something different every time. Folks have been debating the meaning of his words for centuries.

But to me, one thing seems clear about Jesus: he really loves losers and is not a fan of winners.

Think about it. Think about the people he chose as disciples, the people he chose to hang out with. Think of the people he healed. And then think about who he criticized.

It is clear to me that Jesus loves outcasts and weirdos, sinners and sick people. His favourite people appear to be the weak, the vulnerable, the poor, and the desperate. He hung out with snot-nosed children and actual prostitutes, and showed compassion to the disabled and the chronically ill.

And he was downright vicious to the wealthy religious elites.

As he famously said, the first shall be last and the last shall be first (Matt 20:16).

He tells his followers that the Kingdom belongs to children, the most vulnerable class of humans (Matt 19:14). He told a rich man to become poor in order to follow him (Matt 19:21). In his most famous sermon, he said: “Blessed are the poor in spirit… Blessed are those who mourn… the meek… those who hunger and thirst for righteousness…  the merciful… the pure in heart… the peacemakers… those who are persecuted because of righteousness.”

Watching and listening to Jesus, I get the sense that the gospel is good news for the marginalized and it is bad news for the rich and powerful.

In Jesus’s crazy, backwards world, the losers are already on top, and the winners have a lot to learn.

And guys, here’s where Jesus gets complicated for me: I have been a winner all my life.

I’ve lived my life covered and surrounded by privilege. I’m white, I’m straight, I’m abled, I’m educated . . . the list goes on. My family is privileged. My friends are all privileged. My church is all privileged.

So it’s no wonder to me now that the gospel has never really clicked in my life. How could I — a member of the privileged class — really understand a gospel that was meant for the desperately poor, oppressed and broken?

It only really started to make sense to me when I gave birth to a medically fragile/disabled child. The experience slowly opened up my eyes and ears to the experiences of the marginalized, and I’m only now feeling like I’m starting to connect with Jesus.

I was given responsibility for a child who was completely vulnerable and dependent on others simply to survive.

This little person who required tubes in his stomach and IV’s in his body to survive? Who would never learn to articulate his needs verbally, or use a bathroom independently, or or even feed himself without help? This was the kind of person I knew Jesus was drawn to. This little boy was counted among the blessed. He was the kind of person Jesus died for, who was already first in line for blessings.

Jesus tells us we ought to become poor, becoming vulnerable like children, if we want to be blessed. And here was a person who already was those things.

And I began to realize that the reason I had never really understood the gospel before was because I’d never really been in a position to receive it. I always already had everything I needed — love, health, security, esteem. Jesus is the King of Losers. He didn’t really have anything to offer someone like me.

But here in my arms was a child who had almost none of the things I was born with.

Jesus came into the world bearing gifts for those who have nothing.  For the rich and powerful, Jesus mostly has severe warnings.

That’s why he famously said that it’s harder for a rope to go through the eye of a needle than for a rich man to enter the Kingdom.*

Caring for my disabled son has forced me to recognize my own privilege, which in turn is forcing me to acknowledge the lack of privilege many others experience. I have had to take some long, painful looks in the mirror, and face the fact that I am among those for whom Jesus mostly had scathing words of condemnation.

By contrast, I have had to come to terms with the belovedness of those whom I’ve ignored, judged, or scorned — people who seemed weak, pathetic, or uninteresting. I realized I was overlooking Jesus’s absolute favourite people. It’s a hard thing to admit.

Again: Jesus. Loves. Losers. So if I want to get to know and understand Jesus, I need to get to know the folks most deemed losers by the powerful.

I have been discovering, over the last four years, that I need to learn from my son and others like him. The people Jesus called “the least of these.” The people we might call “the marginalized.” The poor, the neglected, the devalued and dehumanized. The sick, the dying, the lonely, the outcast.

In our society, this tends to include:

  • sex workers
  • people of colour
  • LGBTQ+ folks
  • disabled folks
  • people with chronic and/or mental illness
  • incarcerated people
  • folks experiencing homelessness
  • folks struggling with addiction
  • single mothers
  • children.

They are already favoured by God. They hold the key to Jesus’ Kingdom.

So for those of us who are privileged? We need to get closer to the marginalized. We need to listen to them and learn from them. We need to elevate and emulate them. I need to sit at the feet of these people and just soak in their wisdom.

I may be a mother to a disabled child, but I’m still totally privileged; so I still don’t think I can really grasp Jesus’ Good News. But I’m starting to look to Jesus’ favourite people to see what I can learn from them.

I would like to invite you to join me.

If you are privileged, you need to listen to marginalized people. If you’re only learning about God from other privileged (*ahem* — white, male, straight, middle-class, abled people), you are not getting at the heart of Jesus.

If that seems like an overwhelmingly huge task to take on, start here: commit to following one or two people who belong to marginalized groups on social media. Someone from the LGBTQ+ community, maybe, or a disabled person. Seek a few out and just start listening to their stories. (They absolutely do not have to be Christian.)

Or if you don’t really do social media, commit to reading at least one book by an author who belongs to a marginalized group. Like an immigrant, perhaps, or a Muslim.

(Of course, befriend these people in real life, too. I’m just wary of making a concerted effort to befriend a marginalized person as you risk tokenizing them. Perhaps start by listening so that you will know how to be a good friend when the opportunity arises.)

I have just begun to do this in the last two years and it has been utterly transformative. I finally feel like I’m starting to see the face of Jesus. (In ways I never did going to white Evangelical church.)

I know I have lots of work to do. The first person I am going to look to is one who is already in my life: my son.

He already belongs to Jesus, wholly and fully. I need to become more like him.

* (Yeah, I know you’ve heard it translated “camel” rather than “rope.” That’s probably wrong.)

playing in pool

I Think I Want to be a Disability Advocate (But I Have a Lot of Work to Do)

josh-appel-423804-unsplashPhoto by Josh Appel on Unsplash

(Trigger warning: I express some really ableist shit early on. It embodies previous attitudes that I’m working to dismantle.)

As longtime readers know, I don’t get pregnant easily. So when we were ready to start having kids, I had months (and months and months) to think about what I did and didn’t want in life.

I begged God to give me children. But I always had one caveat: But please don’t give me a disabled child. If I’m going to get a disabled child, I’d rather just stay childless. I was thinking of autism in particular, because my husband has autistic relatives; but I objected to any really serious disability.

I didn’t fully realize just how horrifically ableist I was.

My first child was born 29 months later, perfectly healthy. I was able to be the hippie mom I’d dreamed of being: I breastfed, I co-slept, I baby-wore. Motherhood was everything I hoped it would be and more.

It took another 19 months of trying to get pregnant with my second. My prayer was the same throughout: Just let me have another healthy and normal child.

As you also know, things did not go as planned the second time around.

Not only was my second child quickly diagnosed with a life-threatening disease that had him hospitalized for most of his first year, but he showed signs early on of having developmental disabilities.

He was late to hold up his head. Late to smile. Very late to roll over. Very very late to sit up on his own.

Not only was I in constant anxiety about his health in his first year, I was in agony over the thought of having to mother a disabled child.

I hoped and prayed that he would eventually catch up with his peers. Maybe it was just the extended hospitalization and isolation that was holding him back. I researched and hoped and prayed that we could find a treatment. Maybe with the right diet and therapies, we could fix him.

At the very least, I hoped that his disabilities would turn out to be “mild” — maybe he’d learn things a little slower than his peers, but he’d basically be able to live a “normal” life — he’d still be able to make same-aged friends, take swimming lessons, learn to ride a bike, etc.

But as he got older, his delays only became more and more pronounced. He slipped further and further and further behind his peers.

The day he turned three, I wept. We didn’t even throw him a birthday party. The truth was now completely undeniable. At three years old he was still nowhere near walking; he showed no evidence of understanding speech (much less being able to speak); and he still relied primarily on infant formula for nourishment.

He was never going to be “normal.”

The thing I had most dreaded had become my reality.

I knew even then that my thoughts and feelings were horrible. I vaguely understood that my attitude betrayed some very deep and hideous ableism. I didn’t value a disabled child the same way I valued an abled child.

I knew I had a lot of work to do to become the mother that my son deserved.

But that shit is hard, and I was so tired. I had already lived through the trial of keeping him alive through SCID. Now I had to begin a whole new journey of learning how to parent a disabled child?

I felt like I just couldn’t get a break.

Again: I did not realize how incredibly ableist I was.


I had always resisted the idea of being a disability advocate.

I realize that it took an incredible amount of privilege and entitlement to be able to avoid it. Disabled people obviously don’t have that luxury. I just didn’t care enough.

Disability advocacy just seemed too . . . depressing. And . . . unglamourous.

Racial justice and poverty advocacy at least seemed to have a bit of hipster trendyness to it. But anything having to do with disability seemed like an unequivocal bummer.

But around the time that my son turned three and I spent his birthday sobbing, I realized that I was going to have to come to terms with a few things. Now that disability was obviously an unavoidable part of my life, I knew I needed to change some things.

I needed to change myself.

From the get-go, I knew two things for certain:

  • I knew I needed to start by listening to actual disabled people. I needed to better understand their experiences, to learn how to respectfully talk about disability, etc.
  • If I did talk publicly about disability, I did not want to be another beleaguered “disability mom,” adding to the noise.

Too much of what I was coming across online from “disability moms” (most often “autism moms”) I instinctively KNEW was harmful. I knew this because when I read it, I felt nothing but fear and horror and dread. Oh shit, is that my future? was my emotional response.

No. These were not the emotions I wanted to elicit when talking about my son.

If I was going to write about disabilities, it was not going to be about how difficult and stressful it is to parent a disabled child. I knew instinctively that this only further stigmatized disability, perpetuating fear among abled folks and self-hatred among disabled folks.

We need to center disabled people, not their caregivers.

Yes, it can be challenging to care for a disabled child; but ultimately the caregivers still have levels of privilege that their children do not.

“Disability moms” are not the vulnerable ones. Disabled folks are. Their voices are the ones that matter, not ours.

Writing about disability will remain tricky for me because I am a caregiver, speaking from a place of unrecognized privilege.

I’m scared of making things worse by saying the wrong things. Yet I do not want to remain silent about something that is increasingly important to me.

I cannot pretend to be a victim. I must not act like I’m marginalized because I have a disabled child.

I feel compelled to share my journey as I work towards being less ableist, but I worry that I will do it poorly and do more damage.

I am going to do my best.

So far, I have taken the tiniest little step forward by trying to fill my social media feeds with the voices of disabled writers. (I am trying to do the same with people of colour, LGBTQ+ folks, etc). I am starting to learn.

As I move forward, I want to get a few things out of the way.

To the disabled community, I want to say: I am SO SORRY for the ways I’ve failed to be an ally, for the ways I’ve perpetuated ableism, and I want to work towards anti-ableism. I may need correction at times. I know I will still make mistakes. I will do my best to learn from you.

To my dear, sweet Felix, who may never be able to understand any of this in words: I am SO SORRY I was so wrong about you. I was so wrong to fear having you in my life. You are an incredible blessing to me and I hope I never stop learning from you.

felix happy

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