splash on me: light-yoked truth for friends with special needs kids

We walked down the driveway in sunshine to piano lessons a few doors down. I held Finn’s hand and we both wore flip flops (or frip fwops, as he says), and the dirt path was scattered with puddles left over from the rain that morning.

splash on me: light-yoked truth for friends with special needs kids

I told him not to jump in them so he wouldn’t splash me. But of course he jumped in them a little. Probably on accident, mostly, just couldn’t help himself. He is a magnet to muddy water; by proximity, I tend to get muddy sometimes, too.

Recently I was on the phone with Grandma, and she told about some friends of hers who just moved somewhere in our neighborhood. We haven’t met them yet because I’m antisocial it’s hard to meet people when you avoid things like introductions. And our family isn’t, you know, the typical suburban white-picket fence type.

But she assured me they’re great people. “They’re younger, maybe middle aged,” she said. “Well, I guess they’re in their early 30’s. About your age.”

“I’m 41, Grandma.”

“What?! Where did the last ten years go?”

“Heck if I know.” I often wonder the same thing. Where did the time go? How did this happen? Our baby, that mud-magnet, turned three last week.

But if I think about it, I know it where much of the time went: the long adoption process, thousands of hours spent researching special needs and looking for help, going to appointments, praying for answers and wisdom and healing, and learning to communicate to our kids and our community in a way that walks the line between brutal truth and compassionate grace.

I scrolled social media at the end of a rough day last week and immediately regretted it. Satan must’ve been running Instagram that night because it was full of memes like this:

“The true evidence of someone who knows they are loved is that they love well.”

…And…

“The child is largely what the home has made him.”

Those were just a couple of examples. But they were a stab in the gut that night, after a kid repeatedly lied to me even when caught red handed.

For those of us who have kids with special needs, mental health issues, and/or pasts out of our control, these quotes come with a swift, hissing attack of condemnation:

He shuns everyone and pushes us away, so he must not know he’s loved…what are we doing wrong?

 He has a zero trust level and continues to sneak and lie, but he is what the home has made him…wow, have we failed.

Looking back, I believe a lot of what we experienced as judgmentalism or simply indifference grew out of a profound misunderstanding of and lack of experience with mental illness. And sadly, this seems to persist despite the greater availability of information today.

– Sally Clarkson, Different

Those smug sayings might mean well, but they don’t encourage parents of children who compulsively make destructive choices due to trauma or mental illness.

They hold absolutely no inspiration or truth for parents who bleed themselves dry trying to show love to a child who returns those efforts with barbs and snarls.

And they do nothing to strengthen parents of children whose affection swings hot and cold, who hang on to the slightest offense and carry the heaviest of yokes, refusing to see goodness around them or to grow through personal responsibility, or who cannot admit moderation in their view of themselves and others instead of fluctuating between one extreme of believing certain people are infallible, to the other extreme of utter disdain when those same people make an honest mistake and fall off the pedestal they never asked to be put on.

Those parents don’t need to be told that the home is responsible for how their children behave. They’re already doing whatever it takes. Those parents need compassion, respect, and a night out.

Let’s try this saying instead: If your hands aren’t willing to get dirty, your mouth should hesitate to spout off advice or expertise.

Until you have had a child with a severe mental or emotional difference – OCD, autism, clinical depression, PTSD, or others – you just don’t know how constant the disruption can be every day, all the time. So it’s all too easy to assume that the attitudes and outbursts that characterize life with these mysterious children are just the result of a bad attitude, a lack of training, or poor parenting in general.

To complicate matters, children who are undisciplined, unloved, abused, or traumatized can exhibit some of the same attributes and behaviors, so diagnosing children’s issues is a complex pursuit. In my mind, that’s even more reason to extend grace wherever possible and strive for understanding instead of making assumptions.

– Sally Clarkson, Different

 So, parents of special needs kids, listen up: We have to remember – and sometimes remind each other – that our home, our families, our parenting, and our children do not fit the easy, over-simplified cookie cutter mold. This peace is for you. Not those other pieces of veiled criticism and condemnation. Those pieces are not for you.

Those inspirational graphics and pep talks might be a self-satisfied pat on the back for perfect families with perfect kids, but I don’t know any of those. I know hard working, tear-spilling, question-asking families who already wonder if they’re doing enough – or if they will ever be enough – for their children’s needs.

They are struggling through parenting children with learning disabilities, or walking through grief and loss. Some of them are navigating what to do with a child with mental illness or addiction. And others are pushing through major life transitions, like launching kids out of the home and into adulthood, and they are so aware of their own past mistakes that they’re grateful their children have come out alive and thriving at all. Not all of our friends have kids with special needs, but they do all have real kids with real stuff – fears, attitudes, struggles. None of them always have styled hair, impeccable manners, and collars buttoned to the chin.

None of our close friends are perfect parents with perfect children. If they were, we wouldn’t be friends; our life is too messy. We’ve splashed on each other over dinners and coffee, during hikes, in courthouses, in living room prayer, through late night texts and phone calls. We speak light-filled, light-yoked truth to each other without condemnation and offer perspective that we can’t always give to ourselves.

These are the ones we listen to at the end of the hard days. They, too, have dirt under their fingernails, and they aren’t afraid to come within arm’s reach or get splashed on a little. Those are our people.

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Need more encouragement on adoptive parenting? Here you go, a whole page of resources and posts.

stay with me

Five months old, his first Christmas. Finnegan watches eight people constantly buzz around him, and all he can do is scoot backwards.

stay with me: when the star shone on our circumstances and showed us the Savior

 

He’s almost crawling, but so far only his reverse gear works and he ends up pushing himself farther away from what he’s trying to reach. I can tell he wants to go places, to keep up with everyone and get things for himself. Sometimes he fusses about it. But he’s patient, usually, and waits.

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I sit with him on the floor, watching him as he watches everyone else: brothers coming and going, sisters stopping to coo over him before moving on. Even the cats, those lazy things, run circles around us. He looks at me with those blue eyes and I can tell he’s asking, Stay with me? And I tell him, It’s okay, buddy. I’ll stay with you. I have a book to read, he has some plastic keys to shake. And we sit in each other’s company, watching the laundry and dishes pile up as the afternoon goes by.

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What all this means is the tree is probably safe from getting knocked over this year. Next year will be a different story.

Next year will be a milestone, because I turned the big 3-9 last week. My grandma, that brave lady who started 2015 in the emergency room, called me on my birthday and asked how old I was again. And I told her, again.

“Really!” she said, feigning disbelief. “Are you sure you’re not just 21?” (Don’t you love her?)

“Pretty sure. I could go buy something scandalous though, and see if they card me for it. Vince has been wanting some bourbon to cook with.”

“Ha! What would you do if your pastor saw you at the liquor store?” Grandma is Baptist, don’t you know.

“Well, I guess…I’d ask what he was buying.” Ha, yourself.

(Side note: The kids have been wanting to make homemade vanilla for about a year and we bought a bottle of alcohol for that purpose. We finally got around to reading the super-easy instructions last weekend, and I confess it was more than a little disturbing to hear Afton calmly say, “I’ll go get the vodka.” But I digress.)

Our conversations are usually all over the place, coming back to touch on a few things more than once because of her memory loss. She always asks what we’re having for dinner (twice this time) and I told her I was all out of sorts because Vin took all the kids with him (all! the! kids!) to run errands so I could have a few hours to myself. They got home around naptime, but I’d been totally irresponsible and forgot to make lunch. She said she does that too, only she does it on purpose.

But she’d been extra responsible that day, because dinner was well on its way at her house, even though it was still afternoon. She starts making it at sunset, which is around 3 pm here lately. Her vision has deteriorated and she doesn’t like the dark. She no longer drives, reading and writing are no picnic, and she is more dependent than she’d like. Sometimes she fusses about it. But she’s patient, usually, and waits.

She can’t tell that Finnegan’s eyes are blue, and she can’t see the dimple in his left cheek that he inherited from her. She could not have known what this year held for her twelve months ago.

Quiet minds cannot be perplexed or frightened but go on in fortune or misfortune at their own private pace like the ticking of a clock during a thunderstorm.

– Robert Louis Stevenson, The Strange Case of Dr. Jekyll and Mr. Hyde

Most of us have had to adjust one way or another this year, and we’re all facing unknowns that we don’t have answers for. We had no idea what this year would look like. If we’re honest, we’ll admit that we don’t know what Christmas will look like, and it’s only days away.

We’ve sat in one place when we wanted to move. We’ve moved when we wanted to dig our heels in and stay still. We’ve been restless for the next big thing, and anxious about getting what we’ve asked for. We’ve wanted to go places, to keep up with everyone, and get things for ourselves. We’ve watched things darken around us, and wondered if anyone else notices.

We’ve been Joseph, feeling unprepared and out of options. Or we’ve been Mary, holding onto promise in a pregnancy she didn’t plan, and seeing its fulfillment in the most unlikely of places.

Wherever we’ve been, He’s said, It’s okay, Love. I’ll stay with you.

A year ago we faced our own unplanned pregnancy. The Sunday before we told anyone, I remember singing You make me brave, but I was wiping my eyes and feeling anything but brave. But we sang it again recently, and I was holding our fair blond Finnegan — all baby curves and chubby cheeks and sleepy, sweepy eyelashes – and I know more than ever that He delivers on His promise. He is the God-With-Us who delivers us from the unknown, and from the dark outside and in us.

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For our family, by God’s grace, next year we will be moving to a house with more than three bedrooms. More woods, and less homeowner restrictions. There are a lot of unknowns at play and we’re not totally sure what He’s moving us into. We have no idea how the adjustment is going to affect two of our kiddos who are just learning to handle the upheaval of a four-day weekend.

This is the season that transforms darkness to light, when the star shone on our circumstances and showed us the Savior: we celebrate the baby who was kept warm in burial wrappings because He was the lamb of God, and laid in a food trough because He was also the bread of life.

Delivering and providing are what He does, so it doesn’t matter too much that we have no idea what next year will look like. Next year will be a different story.

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related: go bravely: learning to see in the dark

not overcome

We’re usually pretty good about using up leftovers and not having science experiments in our fridge, but twice now we’ve accidentally fermented pineapple.

It’s okay, though. We’ve been learning a little about probiotics over the past few years, and after some cautious investigation we discovered that it is not only edible, but full of beneficial microorganisms. Usually a bit more planning is involved to turn various foods into healthy fermented goodness, but apparently you can also do it by completely avoiding the kitchen during seven weeks of morning sickness.

not overcome: choosing to rise when conditions are rotten

One afternoon while I’m doing some research, Cham brings me a book and asks me to read to her. She wants Fancy Nancy – and well, it could be worse. (Amelia Bedelia, I’m looking at you.) But still, I’m in the middle of something.

“Oh…do you really want to read that?” I ask. “Don’t you want to learn about water kefir instead?”

“No.” As in, No way, you weird loony.

And I give in, consoling myself by giving every hoity-toity character a voice like Effie Trinket. May the odds be evah in your favah.

Last week was a vacation, of sorts — more of a staycation meant to be a “workation” to get some projects finished — some studying, some writing, some time together, some catching up. It started well, and was going well, until the middle of the week. And without meaning to, the week turned into something else with a phone call.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

– James 1:2-4

That brave lady I’ve mentioned before – the one who taught me to fold fitted sheets, make soup, and see in the dark — had taken an early morning trip to the ER, and by the time I got there, things weren’t looking good and a medivac team was on the way to fly her to Anchorage. My dad met me in the lobby and whisked me to her room.

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.

– James 1:12

She was unconscious, tubes and lines everywhere. The nurse filled me in and said her heart had stopped for four minutes that morning, and they did CPR and brought her back — and when I heard that, my heart stopped a little, too. I stayed with her till the medivac team came. She was freezing; I kept my hand on her forehead and prayed. I kept asking the medics if I needed to leave, if I was in their way, and they said No, you’re just fine, and worked around me, priming lines, switching out bags of fluids and medications, and passing instructions to each other. And I whispered in English and prayed in tongues over my Baptist grandma for thirty minutes or more until they were ready to put her on the other stretcher and wheel her outside.

I was in the parking lot, on the phone with Vince, when the helicopter lifted off. I watched her fly.

Do not be deceived, my beloved brothers. Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change. Of his own will he brought us forth by the word of truth, that we should be a kind of firstfruits of his creatures.

– James 1:16-18

We spent several days on alert, on the phone, on edge, on our knees. That first day I was fine and faithful, but the second day I turned somehow and was in tears constantly. I plowed through typing up the kids’ curriculum for the new term, and realized I was crying. I finished submitting Upside Down for paperback, remembered Grandma, and cried again. I did the dishes, wiping my eyes with the same towel and I didn’t even care. The whole day alternated between tears and productivity. Repeat. Repeat.

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Know Jesus, know peace – and even still, that peace has to be fought hard for when we confront loss, and not everyone is equipped the same way to handle it. For some, it looks like control or anger, in the same way insecurity often looks like pride or narcissism. For others, fighting fear looks like grief, on edge.

A mother watches a son fall further into depravity and she grieves and prays. A woman faces betrayal, fear, and upheaval, and a community prays for a family’s future and safety. A city walks on edge, unnerved over terrorist threats and lost lives. We face sin that has fermented into awful, putrid heartbreak in a million directions.

A Baptist uncle speaks of trusting in God’s will and sovereignty, and his charismatic niece speaks of trusting in God’s goodness and truth. And really, we’re talking about the same things.

We sit and wait, wanting answers in the midst of emergency, and we either ferment into faith or fear. Our choice determines what will we be when life takes an unexpected turn — enduring or decaying, rising or rotten. Something healthy, or something sickening.

Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger; for the anger of man does not produce the righteousness of God.

– James 1:19-20

Seven days after her heart stopped, she woke up and did a little physical therapy. The next day, my husband sat with her in her room and made her laugh. She told him how much she misses her cat, he charmed her socks off, and they prayed together.

Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.

– James 5:11

You are so very blessed.

The best way to see in the dark is not to keep stumbling on, but to reflect the One who created light with a Word.

The light shines in the darkness, and the darkness has not overcome it.

– John 1:5

And we are still praying, and so grateful for healing and progress that amazes doctors and glorifies God. This woman in her eighties who finally retired last summer, who raised five boys and then put in more than her fair share of time with me — this is the lady they tried to keep sedated but, well, she kept waking up because you can’t keep a good woman down, and the odds are always in our favor.