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

8 Things I Learned This Summer

I’m taking a cue from Emily P. Freeman and sharing what I learned over the last season.

(I’m increasingly a fan of this type of post. Join me in reflecting on what I’ve learned over the last three months!)

1. I am AMAZING when I’m able to sleep.

20180813_143916_resizedJust taking a nap at 7am, like a normal person

During the month of July, Felix beat his all-time record by sleeping through about 80% of the nights. And I couldn’t believe the difference in myself. For the first time in almost four years I was

  • productive!
  • creative!
  • patient!
  • optimistic!
  • efficient!

By August he’d gone back to his old shenanigans of sleeping through about 0% of the nights, and I hate everyone and everything. It’s a struggle to keep everyone fed and clothed. It makes me wonder how much more I would accomplish in life if I was consistently able to sleep at night. We may never know.

(I wrote almost this whole post in July.)

2. All about broody hens and hatching chicks.
broody hen

In late May we noticed that one of our four laying hens wouldn’t leave her nest. We were worried she was sick. But when we went to take a look at her, she growled and pecked at us. Since I grew up around chickens, I was pretty sure I knew what was going on: we had our first broody hen.

(For those not familiar with chicken husbandry, “going broody” is what a hen does when she wants to hatch chicks. Normally, she’ll just lay her daily egg in one of the nests and then go on with her day, scratching and pecking the ground with her gal pals. Many hens go their whole lives satisfied with this arrangement. But sometimes a hen will decide she wants babies. She will stop eating and drinking and just stay in her nest, growing her clutch of eggs and acting aggressive towards intruders, with the intent to hatch out a little flock of chicks.)

Since we don’t have any roosters in our flock, our girl was unfortunately wasting her time with infertile eggs. We could have tried to “break” her of her broodiness, but we decided to try to set her up with some fertile eggs and see if she could hatch some.

We created a safe, comfortable nest for her and put a dozen eggs from my parents’ co-ed flock in it, setting her on top. (We did this at night, when chickens basically let you do anything you want to them.)

sitting hen

She sat there for 22 days, only leaving her nest once a day to eat, drink, and take a quick dust bath.

Just when we thought we weren’t going to see any chicks, we heard some peeping. Over the next 24 hours, we got six baby chicks! (Of the remaining eggs, two died in the process of hatching. The rest were duds.)

chicks(If you look closely, you can see two chicks peeking out from under her.)

It was a wonderful experience. It has been so fun watching our hen turn into a mama, protectively guiding her chicks all over the run, showing them where to find food. It’s been a treat!

mother hen and chicks

3. I guess I prefer loose and flowy clothes now?

clothes collage

For the last number of years, my “uniform” has been skinny jeans and a button-down shirt. My closet was almost exclusively filled with these items. Lots of navy blue, kelly green, and stripes. It made things easy. I could look put-together with minimal effort. (I don’t do layers and I don’t do accessories. I am truly a minimalist when it comes to getting dressed.)

But this year I got money from both sets of parents for my birthday, and I decided to go on a shopping trip for clothes — my old jeans and shirts were all several years old, and looked worn out. And I came back with soft pants and loose, flowy tops. Florals and neutrals and deep reds. (Still lots of stripes).

Wait, when did that happen? I wondered. I hadn’t made a conscious decision to recreate my wardrobe. These were just the things that felt “me” right now.

4. That Mary Shelley’s Frankenstein is considered the first science fiction novel.

I read and studied this book three times during my undergraduate in literature, and I don’t think anyone ever told me this tidbit. It took watching this short history of sci-fi to realize it.

I was a bit embarrassed to realize I hadn’t known this fact, as I consider myself a fan of sci-fi and fantasy literature. I decided I needed to brush up on my sci-fi history, and watched this whole fascinating series.

5. A backyard sandbox is a pretty zen place even for an adult.

sandbox

We recently designed and built a sandbox in the back yard for Felix, who looooves the sensory experience of sand. We’ve been spending a lot more time in our back yard as a family as a result.

And you know what? Sitting in and playing with sand is actually quite soothing, even for me. It’s very grounding. Just digging and raking around the sand absent-mindedly is a great way to unwind at the end of a busy day. I highly recommend it.

6. What a Snoezelen Room is.

snoezelen

snoezelen room 2

The children’s center Felix attends for therapy recently added a Snoezelen room, and his OT has taken him in there for a few sessions. I’d never heard of one before, so in addition to experiencing it firsthand, I did some research online.

It’s pretty great, and Felix adores it. It’s pronounced “snooze-lin” (it was developed in the Netherlands), and it’s a controlled multisensory environment for people with autism and other developmental disabilities. Its use is meant to be self-directed, and is used both to stimulate and soothe, using lighting effects, color, sounds, music, scents, etc.

From my experience, they’re generally padded and darkened, with different sources of soothing lights, music, and other sensory tools. The room Felix enjoys has a ball pit filled with transparent balls and glowing lights; a sensory board; a tall bubble tube; and fiber optic lights. There are vibrating pads to lay on, and you can turn on classical music and calming projector scenes. He absolutely loves it. I’m considering recreating a similar environment in our own basement.

7. How to do fair isle knitting!

This one is just a brag. I’m very proud to have added this skill to my repertoire. I can now do literally anything in knitting.

fair isle

8. All about monarch butterflies.

monarch life cycle collageWe got some monarch eggs and caterpillars from my sister, and got to watch the whole life cycle several times over. It was an incredible experience! I feel like a monarch expert now! (I wrote a whole post about this.)

***

That’s probably more than you wanted to read! Thanks for sticking through it! What did you learn this season?

Raising Monarch Butterflies: Our Experience

holding monarch butterfly

This year we had an awesome opportunity to watch the monarch caterpillar life cycle, when my sister found some eggs and caterpillars on the milkweed plants in her back yard and offered to let us have a few.

We got to watch each stage a number of times over, so we didn’t miss a thing. I thought I’d share a few pictures of our magical experience, just for fun!

Egg Stage

This is how a our monarch eggs first looked under a microscope:

monarch egg 1

After a few days, the egg turned dark, and under the microscope I was amazed that I could see the unborn caterpillar squirming around inside the transparent shell! A darkened egg is a sign that it’s about to hatch.

monarch egg 2

To get a sense of the size, you can see the egg as a tiny black dot on this piece of leaf:

egg3

Later that day, we saw the caterpillar just out of its shell:

monarch caterpillar just hatchedSo cool!

Larva Stage

Over the next two weeks the caterpillars grew and grew and grew, doubling in size almost every day:

monarch caterpillarsWhenever I was out in the car, I was constantly pulling over to pick fresh milkweed from the ditches to feed my hungry brood of caterpillars.

As they grow, monarch caterpillars shed their skins four times during this stage. I never got to witness the molting, but I did see a caterpillar shortly after it lost its skin.

molting

We could tell a caterpillar was getting ready to pupate when it started to spend a lot of time on the lid of its home. It was looking for a place to make its chrysalis! We knew the deal was sealed when it started to make a silk button to hang from (seen below, circled).

monarch caterpillar silk buttonThen it would attach its rear end to the button and hang upside down in a J-shape.

monarch caterpillar pupatingIt would hang like this for over 12 hours, hardly moving. Beneath the skin, crazy changes were happening.

When the hanging caterpillar started to get a bit more active, we knew the transformation was close at hand.

Pupa Stage

The actual change to a chrysalis takes less than two minutes after the skin first splits, so you have to watch long and carefully if you want to catch it. I started to notice that the skin begins to pulsate just before that happened. I got to witness this magical event three times, with lots of obsessive watching.

monarch pupating

The skin cracks along the back, and the caterpillar “unzips” its skin by doing its “pupa dance,” revealing the wet green chrysalis underneath. It dries and hardens over the next hour or so. By the next day, it looks like a magical jewel.

monarch chrysalis

It’s hard to believe there’s something alive in what looks like a hanging jade stone. Then all of a sudden, after about 10 days, it starts to darken, and by nighttime the chrysalis is transparent, revealing the wing patterns inside.

monarch chrysalis clear

Adult Stage!

The next morning, the butterfly emerges! It starts with damp, crumpled, wings, that quickly dry and flatten out.

monarch butterfly eclosing

adult monarch

After about two hours –when it starts pumping its wings — it’s ready to climb onto your hand. This was my favourite part. It felt incredible to have this delicate little insect walk along my hand.

We learned that you can quite easily distinguish between the sexes by looking at the wing patterns.

The male monarch has dark spots on its hind wings:

male monarch

The female has darker, thicker veins on its wings, and the spots are absent:

female monarchAfter I had fully appreciated the butterfly’s beauty, I let it walk onto a flower (they feed off of nectar).

monarch on flower

One morning we found a dead monarch butterfly in our yard that had been killed by a predator. We took the opportunity to look at its wings under a microscope (we have this one). It was so interesting to see the scales.

butterfly microscope

monarch wings under microscope

butterfly wings under miscroscope

There you have it! I highly recommend it as a wonderful learning experience!

If you live in Canada or the Northern US, you can start looking for eggs or caterpillars on milkweed plants in mid-July. I found them surprisingly abundant and easy to find this year — almost every time I grabbed some milkweed to feed my caterpillars, I found another stowaway or two, until I was swimming in caterpillars and had to give a bunch away.

Just last night, we found a black swallowtail caterpillar, and I’m looking forward to seeing how things are different.

Thanks for joining me on this little adventure!