Category Archives: special needs

trying my patience: grace for others as we grow

Posted on by February 7, 2024

The kids were pulling presents out, and Kav held one up.

“Who’s this for?”

I pointed to the name written on it. “It starts with V. Who do you know starts with V?”

“Dad,” Finn answered for him.

Um, okay. Right, Dad starts with V…if his name is Vince, at least.

trying my patience: grace for others as we grow

We’re all working on the English language here in this house, even the parents who write and wrestle with commas for a living, and also the older kids in various levels of literature and language arts.

Reagan brings me her journal and holds it out to me. The sentence she’s trying to write is “Finn is coughing today,” and I bet you can guess which word is tripping her up. Because English is hard, and also stupid.

So far she’s tried “koring” and “caing” and I’m super excited that she’s figured out the “ing” part consistently. And I know you can’t sound out the word coughing because the letters don’t make sense, but she needs to at least try. She knows what the sounds are.

Often though, she doesn’t want to try, so we get these wild random spellings that aren’t even close. And I can’t blame her, sometimes laziness is my default, too.

I could just spell it for her. If she copied it enough times she would probably learn it, and learning is why we’re doing this, of course. But we’re not just wanting her to memorize; we’re wanting her to think, and solve, and resolve. And for that, she needs to sound it out. We want solving problems to be our (and her) default, not just memorizing answers.

And when she tries that, that’s when I’ll give her the real answer and explain that English is hard and stupid. (Okay fine, probably not.)

But I won’t step in if she’s not even trying. I’m not playing tricks on her; I’m teaching her that we can do hard things. Simultaneously, God is teaching me the same thing, because this slower-than-molasses progress tries my patience like you wouldn’t believe. Her way is not my way. But if I push her to do things my way, we take a small frustration and turn it into a much bigger conflict.

I therefore, a prisoner for the Lord, urge you to walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace.

– Ephesians 4:1-3

I’m helping her navigate problems and grow, and we all do that growing and navigating at different levels. We understand things differently because we have different perspectives.

For example, most of us know exactly what’s happening in this verse:

…for [Jesus] was teaching his disciples, saying to them, “The Son of Man is going to be delivered into the hands of men, and they will kill him. And when he is killed, after three days he will rise.”

– Mark 9:31

It’s pretty straightforward to us. We’ve read the Book, seen the crime play out; we know what happened and we’ve heard the story a zillion times.

But His disciples – those closest to Him – didn’t get it. They didn’t see what was coming, and this was their response:

But they did not understand the saying, and were afraid to ask him.

– Mark 9:32

To us, there’s no ambiguity. The way Jesus said it is the way it actually happened. But if we put ourselves in the disciples’ shoes, what He said was totally bewildering. Is He really talking about Himself? Is he being symbolic? Does “killed” really mean “killed,” or does it mean something else?

Are we dealing with something that’s straightforward, or is there more to it than that? Is “cough” spelled C-O-F-F, or does it have some of those confusing extra letters in it?

So in their misunderstanding, they respond in a way we totally relate to. They were afraid to ask Him. The Greek for fear here is “phobeo,” and it is a strong fear, meaning to put to flight, terrify, frighten, or incite dread. It’s the kind of fear that avoids and leads to more misunderstanding. I don’t want to know, so I won’t ask. So they didn’t.

Maybe they were too proud, too insecure to reveal their ignorance. Maybe they were hoping the situation would just go away. And we do those things too sometimes, glossing over and avoiding what makes us uncomfortable.

And sometimes we’re afraid to talk about things directly, so we talk behind each other’s back. We don’t want to look stupid or wrong, so we put other people down, instead. Which is interesting because in the very next verses, here’s what the disciples do:

And they came to Capernaum. And when [Jesus] was in the house he asked them, “What were you discussing on the way?” But they kept silent, for on the way they had argued with one another about who was the greatest.

– Mark 9:33-34

They competed. They puffed up. They pointed fingers. And then they avoided again, refusing to admit what they’d been doing. Fear, pride, and insecurity were still driving them, and they didn’t want to do the hard work of considering something unfamiliar and seemingly impossible.

Which leads me to something that happens in our house occasionally: Vin or I will explain something to one of our kids, and they’ll interrupt us with, “I know.”

(Right, this never happens at your house. Humor me.)

So Vin or I will answer, “No, if you knew, I wouldn’t need to be telling you,” and then continue what we were saying, hoping that this time they’re paying attention. Because we know the “I know” is blowing us off. Sometimes it’s insecurity and pride, pretending to understand something they don’t; and sometimes it’s laziness, not wanting to take the time to consider a different perspective. It could be any number of things, really. If solving problems were easy, we wouldn’t call them “problems” in the first place.

And we don’t solve problems in all the same ways, any more than we sound things out in the same ways. For example, I have no idea how they teach language arts in the South, where they are reckless with vowels. Excuse me for yelling, but I AM SO GLAD I’M NOT TEACHING MY KIDS ENGLISH IN THE SOUTH.

Because in some places there, for example, little i says ee, and big I says ah. As in, “Be steel and know that Ah am God.” If I’m quiet, I can hear this in the voice of my pastor’s wife.

But it’s not just vowels; it’s also syllables. In the South they remove them from some words (I was shocked and bewildered the first time I heard a Southerner pronounce “oil,” which to me should sound like “oy-ul” and not just “ull”) and then, messing with vowels again, they put extra syllables into other words where God never intended them.

How many syllables does “sin” have? Two if you’re from certain parts of Texas: See-in. Clap, clap. Two syllables. No big deal, we both agree sin is wrong. We just say it differently.

Months ago I went to a reception for a new friend and I didn’t know how to spell her name on the card I brought for her. So I asked a mutual friend. Unfortunately, that friend is from the South, and I don’t even know how to phonetically write what she said. But as she coached me through the spelling, it was sort of like, “Kye (rhymes with eye) – ah – ee – ayus –”

And I thought to myself, What’s an Ah? What the heck is an AYus? I knew it made perfect sense to her, but I had no clue. So I smiled, nodded, and happened to look down at the cake, which had our friend’s name on it in frosting.

If you’re from the South, I hope you know I love you. We’re saying the same things; we just say them differently.

Communication can be hard. Understanding and loving each other can also be hard. Jesus didn’t buy peace with compromise, but He also knew His disciples were befuddled, wrestling, and had their own insecurities and growth to overcome.

So He patiently let them wrestle – you think He didn’t already know what they were talking about along the way about who was the greatest? – and then He brought some gentle correction and perspective.

And he sat down and called the twelve. And he said to them, “If anyone would be first, he must be last of all and servant of all.” And he took a child and put him in the midst of them, and taking him in his arms, he said to them, “Whoever receives one such child in my name receives me, and whoever receives me, receives not me but him who sent me.”

– Mark 9:35-37

The thing about little kids is that they love to learn. They don’t pretend to have all the answers. They love risk and wonder. They’re not afraid to ask questions and they’re not driven by pride or insecurity. And generally, if they’re with someone they trust, healthy kids are excited about the unfamiliar instead of afraid of it.

But when we see people doing something unfamiliar or unexpected, we tend to create circles of belonging and exclusion, like the disciples did in the very next verse:

John said to him, “Teacher, we saw someone casting out demons in your name, and we tried to stop him, because he was not following us.”

– Mark 9:38

Jesus responds to their tattling with perspective and wisdom in His correction, because He knows they are still sounding this out, too. He doesn’t want them — or us — to just memorize; He wants us to broaden our perspectives and consider new things. He wants us to think, and solve, and resolve.

But Jesus said, “Do not stop him, for no one who does a mighty work in my name will be able soon afterward to speak evil of me. For the one who is not against us is for us. For truly, I say to you, whoever gives you a cup of water to drink because you belong to Christ will by no means lose his reward.”

– Mark 9:39-41

We often misunderstand things that are perfectly clear when they’re not what we expected or predicted. But the Holy Spirit is teaching us, making us like Him, and He doesn’t want us to just memorize principles, because memorizing answers isn’t the same as solving problems. He wants us to walk in a manner worthy of our calling:

With all humility and gentleness. With patience. Bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace.

(Even if we don’t know an A from an Ayus.)

To do that, we need to consider the unfamiliar, and do hard things. We need to grow deep and wide. We need to snuff out comparison with humility. We need to try our patience, stretching it farther than we thought it could go. And when we do, grace will press out our insecurities and pride and unnecessary conflicts, as light presses out darkness.

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wide spaces: finding grace in the overwhelm

Posted on by October 26, 2023

I drove home from an appointment with Reagan’s team at our homeschool, leaves skipping across the road while the Nitty Gritty Dirt Band sang about fishing in the dark. Just me, no distractions, no kids arguing in the back – a good time to think some deep thoughts.

It was our annual special ed meeting, a newish development for us but also one I dreaded last year. But this year I feel like a grown up about it, which means I’ve reached a new level of maturity that borders on reckless indifference. Reagan is almost eighteen and that means nothing to her development, care, or education, but it changes a lot of things legally, initiating a whole new level of well-meaning bureaucracy in our lives.

wide spaces: finding grace in the overwhelm

In the meeting we discussed goals for math, reading, and writing. Math, for instance: The team suggested getting Reagan a watch to help her practice telling time, and we talked about what that would accomplish.

“Nothing,” I told them, “other than a broken watch, because she will get it in the water, pick at its mechanisms, and destroy it in within two weeks. We might as well find a twenty dollar bill and have the fun of lighting it on fire.” (I know, fun at parties, remember?) She doesn’t understand the concepts of seconds, minutes, and hours, anyway. She does understand days (usually), months (sometimes), and parts of the day, like evening and morning, with variable accuracy. Even on the days when she remembers how to tell time, it means nothing to her, and it was bought at the cost of weeks of frustration and often disobedience.

Money? Same thing. She knows what coins are worth, but that information is meaningless because she doesn’t understand buying, selling, earning, or spending. There are no hooks to hang that knowledge on. Yes, we take her to the store and go through the motions with her, but that’s all it is – going through motions. Her mind doesn’t understand the concepts of what is really occurring.

I flipped the blinker and turned right, wondering how many years you can teach first grade math to the same child. One reason we homeschool is to keep our kids from wasting time with busywork, but for eleven years that’s all it seems like most of her math assignments have been for her. But we’ve persisted, hoping something would finally click, or she would be healed, or we would see some bigger progress.

So how do we get more basic than the basics? Are we just pushing these things to make ourselves feel better? These are the questions I’m pondering lately. Have we wasted all this time, trying to teach her useless things? I know, I hear you; it hasn’t really been wasted. God never wastes anything. But just give me a minute so I can overthink this.

I don’t want to give up hope for her healing. I want to live in the green light and yet at the same time work with her where she’s at – where she’s still at, where she might always be at. I don’t want our days to be long, frustrating exercises in futility, checking off boxes when those boxes don’t apply to her.

I want to find the right boxes, where she clicks perfectly and thrives. And yes, we are an out-of-the-box family, I don’t have a problem with coloring outside the lines. But I’m tired of fishing in the dark, firing blind. We need structure and outlines and achievable goalposts to reach for, because things have been so “too much” and yet often also “not enough.”

There were four of us in the meeting and everyone was on our side; there was no combativeness or judgment, praise God. But there are always stark reminders that these other women, kind as they are, don’t fully grasp Reagan’s challenges. One mentioned vocational rehab as an option, and I reminded her that Reagan is cognitively anywhere from two to six years old, and you would not send a preschooler to vocational rehab.

“Right,” she nodded. I appreciate her agreement and understanding, but I’m so tired of being the only one that keeps these things in mind as we live with her limitations. I don’t want to be the naysayer all the time. I don’t want to naysay at all. But here we are: The freedom to do anything, but limits everywhere.

I read this about limits recently:

…What nuns, hermits, and students do is facilitated rather than hindered by the confines of the formal structures they inhabit; because those structures constrain freedom…they enable movements in a defined space. If the moves you can perform are prescribed and limited – if, for example, every line of your poem must have ten syllables and rhyme according to a predetermined pattern – each move can carry a precise significance.

– Stanley Fish, How to Write a Sentence

…and this makes sense to me. I need the focus provided by parameters and limits within the overwhelm.

So eleven years into this, we are reevaluating how we structure her days, and praying again about how to make them the most fruitful. And this, at least, is normal for every kid I’ve homeschooled: Tweaking and adjusting is normal, frequent, and to be expected.

We don’t want to push things for the sake of pushing them, or because they’re what’s “supposed” to happen, or because it’s what she ought to be able to do in a perfect world without FAS and other traumas. I’m all done with the exercise in futility, and yet I’m also not ready to admit she can’t be healed.

Which means I’m here in the middle, realizing for the brazillionth time that I can’t force healing, growth, or learning to happen. We need His grace; it has to be His work here. And we need to find other ways to engage and grow her that won’t be a constant source of aggravation and strife for all of us.

I heave a long sigh, and the Lord corrects me. Hey Love, you do not carry the weight of the world. I do. Agree with Me. So I do, mostly…I think 99.5 percent, at least…and I remind myself He’s doing great things. Working on our behalf. Making our efforts mean something. Giving us wisdom and discernment.

Every step forward for each of us is pure grace.

But still, I haven’t had a real vacation (the kind without kids, appointments, or interviews) in 22 years and there’s this 3-inch binder for Reagan’s paperwork and future planning that I need to look through this evening. Or at least, one of these evenings. Or at least by late November.

And I want nothing to do with it; I want to fling it out the window. I want to be Knightley, napping in the rocking chair.

So, maturity…yeah, I dunno if I’m getting anywhere with that in my own heart, either. The further we get it in this, the more I come up against my own selfishness, my own disappointments, my own imperfections and limits. My own need for grace.

I have been overwhelmed with overwhelm, and am longing for some…I don’t even know. Peace. Space. Victory. Rest.

And then a few weeks ago I read this, about the Lord leading the Israelites out of slavery and into a good land:

Then the Lord said, “I have surely seen the affliction of my people who are in Egypt and have heard their cry because of their taskmasters. I know their sufferings, and I have come down to deliver them out of the hand of the Egyptians and to bring them up out of that land to a good and broad land, a land flowing with milk and honey, to the place of the Canaanites, the Hittites, the Amorites, the Perizzites, the Hivites, and the Jebusites.”

– Exodus 3:7-8

Did you see that? Three big things are happening here. One: The Lord sees their struggle. That’s super great, we need to be seen and heard and known.

And then B: He comes to deliver them to a good place, which is filled with hope and relief and promise. I can just see that good and broad land, with rolling fields, gardens, and a little stream cutting across a cluster of woods.

But then, C: In the same breath, before He even finishes the sentence, He says the place is absolutely teeming with horrible, idolatrous enemies they have to conquer.

Record scratch. Wait a second.

But I think this is where I’ve been living. I mean, maybe there’s a pattern here: We get to a new breakthrough, we start to see light ahead, and boom – new challenge, new overwhelm, new enemies to conquer. In fact, I’m almost positive I’ve written about this before, a little over a year ago. So why are we here again?

Because it’s the next level. The Lord delivers from overwhelm, but He also delivers us into overwhelm. Because He’s doing something in the midst of it.

I will rejoice and be glad in your steadfast love,
    because you have seen my affliction;
    you have known the distress of my soul,
and you have not delivered me into the hand of the enemy;
   you have set my feet in a broad place.

– Psalm 31:7-8

We can keep pushing Reagan through math workbooks, and enjoy the predictability of knowing what we’re getting into because it’s what we’ve always gotten. Or we can toss them aside and look at a wide, new land of almost limitless, overwhelming other options. Really, it’s not that different from the deliberations public schooling parents face when they first switch to homeschool.

My friend said this the other day about her daughter:

“We never had to do more than say ‘yes’ and just be there for her and love her. As long as we were faithful to do that, He did all the rest. We could’ve just rested in that instead of all the tears and worry.”

And I know this in my head but I have had to learn it over and over – which really, does that mean I’ve ever learned it? – because I have also spent many days in long, frustrating futility with tears and worry. I’ve wasted a lot of time with that useless busywork. But I’m hoping that this time the concept of grace will stick, that it will click, because I need healing and progress, too.

Learning that I can trust Him in all of it makes all the difference. Right, I’ve said that a million times here, and I think I’ve believed it 99.5 percent of the time, even. But probably because it’s taken this long to have hooks to hang that knowledge on, I’m finally learning about grace and trusting Him in new ways – like, I’m finally feeling it in my bones, and understanding that we are bound by love, and therefore, free.

If the Lord delights in us, he will bring us into this land and give it to us, a land that flows with milk and honey. Only do not rebel against the Lord. And do not fear the people of the land, for they are bread for us. Their protection is removed from them, and the Lord is with us; do not fear them.

– Numbers 14:8-9

I can almost grasp it right here – this shift that has been so slippery, so hard to hang on to, but it’s starting to make sense and feel real: Because if I can trust Him, then the future brings more joy and rest. Because if every step forward is His grace and not dependent on my perfection or ability, then the obstacles ahead are bread for us. Instead of the expectation of more limits and more confusion and more lack or dread or any other thing not of Him, there’s something that looks a little like reckless indifference – but what it really is, is freedom. It’s the next level.

It looks like rolling fields, and cultivated gardens, and a stream running free in all the directions He sends it.

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handle with care: the Kingdom’s response to grief & pain

Posted on by August 24, 2023

I walked down the hallway this morning toward the meeting room where we have weekly prayer. My friend whose husband died last Saturday was there, already being hugged by another friend, so I waited my turn. We prayed for her, and rejoiced for him – I’ve mentioned him to you before – and then we moved on to interceding for our church, community, nation, and world.

handle with care: the Kingdom's response to grief and pain

The world needs intercession. Maybe that’s why we’re noticing more alarms; there’s smoke everywhere. Something is definitely spiking in the atmosphere. More warfare, more attack – but also, more coming together, more standing back to back. More hugging and generosity. More looking out for each other. And we need to look out for each other.

One of my friends is losing her hair and facing hard choices about cancer treatment, and another is on alert for wildfire evacuations while her husband recovers from a chainsaw accident. We have close friends dealing with extreme financial hardship and health challenges. All around, we are fragile and broken, healing and raw, on edge and in His hands, because there’s no other place to run for safety.

In our family, we got Kavanagh’s cast off last week just in time for more medical appointments for Andrey as we navigate the medical merry-go-round of specialists with varying degrees of knowing what they are doing, and equally varying degrees of how much they charge for their particular blend of experimentation and expertise.

So far, we know there’s a CT scan and then a surgery coming up. We are praying for healing and expecting mighty things, while simultaneously calling down fire upon the racket of Big Pharma and looking for the right ENT specialist. Someone who doesn’t charge $1200 an hour to those who pay out of pocket would be greeeeeat.

Also, since I’m giving you the big family update, guardianship proceedings are coming up – we finished the courses, and the first round of paperwork goes to the Palmer Courthouse this week. And my heart is…better…I’m pretty sure it’s better, at least…about it.

One of the things that helped was, shockingly, the courses themselves. While most guardianship cases in Alaska seem to be for elderly people who need assistance, there was one case study that sounded a lot like both Andrey and Reagan. Even better, the mother in that case also felt frustrated at the need to go through a legal process (because, GAHHHH) just to simply keep caring for her child as she had been doing all along, which has been my main beef, too. But in a move that shows the government can do a few things right (grin) even the state of Alaska acknowledges those valid feelings, and explained the need for guardianship in a way that was gentle and on the family’s side. Repeatedly, they described how this is a delicate process.

And suddenly I felt the relief of not having to plow new ground. I am so tired of plowing new ground. Here, finally, I saw that someone has walked this path who wears shoes like mine, and the trail has already been somewhat cleared. A weight lifted off me.

We are fragile, broken and healing. We all need to be handled with care.

Walking gently is imperative right now, because the bull in the china shop doesn’t have eyes or ears to recognize the needs around them. These are days to move cautiously and deliberately; it’s hard to cultivate sensitivity and discernment about the times without a little stillness.

“I did not send the prophets, yet they ran; I did not speak to them, yet they prophesied.

But if they had stood in my council, then they would have proclaimed my words to my people, and they would have turned them from their evil way, and from the evil of their deeds.”

– Jeremiah 23:21-22

This is why we listen for His words and then pray for boldness to share them in the ways He has gifted and positioned us. It’s easy to make excuses when we’re hurting and grieving, but those things don’t let us off the hook of praying and abiding. You know what happens when we pray and abide? He tells us stuff. And often, He tell us to share about it.

Let me make a huge understatement: The Church hasn’t always been great at this.

The Church is filled with people who really aren’t familiar with the love of God, and it’s shown by how we puff ourselves up at the expense of each other. Love builds up, but knowledge puffs up – and we already know that wounded and hurting people tend to wound and hurt other people. But Kingdom culture changes that, because in Kingdom culture, we abide and surrender. Rather than festering inward, those wounds and pain draw us outward and give us wisdom to recognize similar wounds and pain in others. Oh friend, I recognize those shoes you’re wearing. They look like mine, too.

When we are tender and fragile, we naturally lean toward the friend who wields words and truth gently, who holds wisdom humbly because they won it through pain without allowing bitterness to fester. A heart that is ready to be comforted runs to the friend who carries compassion forged through experience.

– Risk the Ocean: An Adoptive Mom’s Memoir on Sinking and Sanctification

Have you ever broken something, fixed it, and then broke it again because you weren’t careful with it? We used to have a baby gate like this – actually, we’ve had a million things like this, but the baby gate is a strong memory because we had to teach our kids to use it gently. If it was treated with respect, it worked perfectly to keep our toddler from trespassing upstairs. But if someone just swung it open or slammed it shut, it would break again.

Because things are more fragile where they’ve already been fractured. We are, too.

So we are walking in more weakness, but also more strength. We are abiding and watchful, listening and interceding. Pain and hardship haven’t won the day; God has and is continuing to take everything the enemy throws at us and turning it for our good, for His glory.

For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

– 2 Corinthians 12:10

We are wiser and healthier. More strategic, more mature. Less prone to falling for the lies and manipulations of the enemy. Less likely to act out in puffing insecurity toward those around us who are also hurting, and more equipped to create an atmosphere of healing.

We can know things for ourselves but still need to hear them from others. We can encourage each other with truth and fight each other’s darkness, but still need others to shine that truth into us on the days that fall pitch black. We stumble and get our hands and knees in the mud, and a fellow traveler says, Here, I’ll hold your lantern for you while you get back up again. There you are. Bravely now, onward.

– Risk the Ocean: An Adoptive Mom’s Memoir on Sinking and Sanctification

We’re not looking down on those dealing with affliction and darkness because we remember our own pain and fumbling. Grief is not a competition.

But when we allow the Lord to use it to make us more like Him – the One who was acquainted with grief – it is a qualifier.

The wisdom and maturity wrought from it empowers us to lead others back into wholeness. Our brokenness helps break the path ahead, and plow the ground for others. And as we go there, we are bringing the culture with us.