Sometimes, when I post a photo of my family on Instagram, I consider being brutally honest and writing about all the chaotic “things” which happened before and after the peaceful pic was snapped.
(You know, like how someone had just finished crying because of a stubbed toe or how someone subsequently got angry about something her sibling did…)
One of my daughters has been suffering anxiety of late. She was enthusiastic about people and all things new, but in the past few weeks, she cries and begs not to go to places where there will be large crowds.
My son just went through a year of cancer treatments, and while we are finally finished, there is no guarantee the cancer won’t return.
At night, he breaks down. He wonders why life is so hard, and why the doctors’ appointments and surgeries never end and, and, what if he got sick tomorrow?
And I feel as though I am always trying on new hats, looking into this career then that like a frenzied bird, never alighting to say, “Aha! This is me. Now I can simmer down.”
Perhaps these struggles are common to most people, or maybe they are unique to my family.
I do believe that suffering and hardship are an integral part of the human experience.
You know what makes everything harder than it should be?
Fear’s messages sound something like this:
You should have…
Why did you....
What’s wrong with your child?!...
I could/would never have done that…
Just trust God…
Well, look on the bright side…
At least it’s not xyz…
Have you ever heard these mantras, friends? Have they been directed at you?
Have you ever said them yourself?
It's all right if you have. I know I've certainly said my share.
On Why My Family Really Doesn’t Fit The Proverbial Mold...
Have you heard the term “neurodiverse”?
According to Google, neurodiverse means “displaying or characterized by autistic or other neurologically atypical patterns of thought or behavior; not neurotypical.”
I love using this term because instead of labeling people whose brains are wired differently as “bad” or “disabled”, I get to use a descriptive term which implies that “normal” is a spectrum.
The neurodiverse are just more “diverse” in how their minds work.
Using “neurodiverse” also puts the onus on those of us who are more like the majority of people (neurotypical) to learn, learn, learn how the neurodiverse person thinks and moves through this world.
Having a family with members who are neurodiverse will sometimes make you stand out like an annoying sore thumb, especially in the standard places where people gather to socialize.
Church can be overwhelming for a child with sensory sensitivity: loud noises, crowds, weird smells, etc.
This makes church extremely painful for neurodiverse kids.
And most churches and church classes are structured to cater to neurotypical folks.
I’ve read stories about moms with neurodiverse children being told their littles cannot attend Sunday School or being asked to leave a church service because their kiddos were being too noisy or “disruptive”.
Then there are social groups, parties and functions.
Parties are so so fun for most children, yet for some children, they are torturous.
How This All Plays Out For Us In Everyday Situations
For us parents of the neurodiverse, we are always “on call”.
Our kids will appear to be clingy and whiny while your kids are skipping around and having fun.
We may not really get to visit with you much, though we are longing to.
We experience every stare and every question at 100% magnification.
It is as though folks are standing on boulders screaming through megaphones into our ears.
Yes, we know we seem strange.
Yes, we know our kids aren’t enjoying themselves like most of the other children are.
Yes, yes, yes, we wish our kids were having fun like yours. Of course we do.
No, we are not more overprotective than the average parent.
If our littles wanted to run and play and galavant, we would be thrilled.
Yet, It’s All Really A Gift...
Do you have an idiosyncrasy or quirk? Do you have any pet peeves no one really gets?
Do you hide these things so as to “fit in”?
Hiding is a luxury the neurodiverse do not have. Their struggles are always on display.
In spite of the constant hand-wringing and book-reading involved in the parenting of the neurodiverse, I am so incredibly grateful for my children.
They are truly a gift.
They are a gift because they have handed me empathy and compassion on a platter.
When I see another mother whose child is "unreasonably" clingy or who is having to rush home earlier than all the other moms, my heart goes out to her. I know how she feels.
When I read why many parents of neurodiverse children do not attend church, I get it.
My babes are a gift because they have taught me that true freedom is not found in “fitting in”; it is found in loving what I have been given.
They have taught me to look inward when I feel pangs of envy upon seeing families easily enjoying themselves in this world.
What does my sudden jealousy reveal about me?
My children have taught me that it is okay to dance to the proverbial beat of a different drum.
My decision-making thought-process often goes something like this:
“Everyone says we should be like xyz; but so what? We’re not everyone”.
My diverse family has given me the gift of stopping and resting when I have wanted to go, go, go.
The Myth Of The Lonely Sufferer
As you know, I’ve been reading The Universal Christ by Richard Rohr. I feel as though I am having an ongoing dialogue with everything in the book.
In one chapter, Rohr points out the universality of grief: all grief is really one grief.
Like, you know when you are sad about something and it builds up to a breaking point? And then, while you are crying, you think of more and more and more sad shit and the floodgates open? And soon you are weeping about the problems of the whole wide world?
I used to think it was wrong to weep that way.
Like, come on lady, you’re being too dramatic.
But now I see that weeping for the weight of the world is my participation in universal suffering.
And this connects me with Christ.
Grief and pain and heartache, loneliness and isolation and being misunderstood are opportunities to experience Christ's suffering, which in turn is an opportunity to connect with all of humanity’s suffering throughout all of history.
I still say, fuck cancer and fuck mental illness. All this needless suffering is devastating and shitty, and we should not paint it pretty.
There’s a reason God wept at the tomb of her friend.
So what is my point?
My point is that wherever you park while reading this post, however you are currently feeling, I hope you know that when you most taste your brokenness, you are indeed less alone than you've ever been.
You are in the sweaty grimy company of the hurting multitudes. You are in the blood gushing, nail-pierced, rejected and scorned company of the Suffering Christ.
“A Crucified God is the dramatic symbol of the one suffering that God fully enters into with us— much more than just for us [...].” (The Universal Christ, 162)
And so, dear one,
Weep all you need.
Do you hear the multitudes weeping with you?
Then,on the next clear star-studded night, drive out into some open field .
Turn off your car so's you can step, step, pitter-patter, naked-feet-to-spongy-soil, kiss, kiss.
Listen to the chirruping crickets and the breeze that's tousling that tall grass, snap, crackle, pop.
Let the glorious night air gulp up your exhale: out, out, out.
Do you hear it?
That rhythm, that beat, that cacaphonous melody of your one and only, uniquely-you drum?
Go ahead, crank up that beautiful music, dear, dance all crazy-like.
And when you pause to choke up some air, open your eyes.
You might glimpse me there, cavorting, snorting holy-night-air, caught up in my own hullabaloo, me being me...
Can you see it? The truth?
You're always, always, free to be you.